Oh yeah....I wanted to include one of the Appendices here to give you some insight and a snippet of the book....
"Forty Things I Needed the Most"
1. I am not stupid, I am wounded. Please respect me.
2. Come close, speak slowly, and enunciate clearly.
3. Repeat yourself - assume I know nothing and start from the beginning, over and over.
4. Be as patient with me the 20th time you teach me something, as you were the first.
5. Approach me with an open heart and slow your energy down. Take your time.
6. Be aware of what your body language and facial expressions are communicating to me.
7. Make eye contact with me. I am in here - come find me. Encourage me.
8. Please don't raise your voice - I'm not deaf, I'm wounded.
9. Touch me appropriately and connect with me.
10. Honor the healing power of sleep.
11. Protect my energy. No talk radio, TV, or nervous visitors! Keep visitation brief (five minutes). [This was once she woke up and was in rehab]
12. Stimulate my brain when I have any energy to learn something new, but know that a small amount may wear me out quickly.
13. use age-appropriate (toddler) educational toys and books to teach me.
14. Introduce me to the world kinesthetically. Let me feel everything. (I am an infant again.)
15. Tech me with monkey-see, monkey-do behavior.
16. Trust that I am trying - just not with your skill level or on your schedule.
17. Ask me multiple-choice questions. Avoid YES/NO questions.
18. Ask me questions with specific answers. Allow me time to hunt for an answer.
19. Do not assess my cognitive ability by how fast I can think.
20. Handle me gently, as you would handle a newborn.
21. Speak to me directly, not about me to others.
22. Cheer me on. Expect me to recover completely, even if it takes twenty years!
23. Trust that my brain can always continue to learn.
24. Break all actions down into smaller steps of action.
25. Look for what obstacles prevent me from succeeding on a task.
26. Clarify for me what the next level or step is so I know what I am working toward.
27. Remember that I have to be proficient at one level of function before I can move on to the next level.
28. Celebrate all of my little successes. They inspire me.
29. Please don't finish my sentences for me or fill in words I can't find. I need to work my brain.
30. If I can't find an old file, make it a point to create a new one.
31. I may want you to think I understand more than I really do.
32. Focus on what I can do rather than bemoan what I cannot do.
33. Introduce me to my old life. Don't assume that because I cannot play like I used to play that I won't continue to enjoy music or an instrument, etc.
34. Remember that in the absence of some functions, I have gained other abilities.
35. Keep me familiar with my family, friends, and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them.
36. Call in the troops!!!! Create a healing team for me. Send word out to everyone so they can send me love. Keep them abreast of my condition and ask them to do specific things to support me - like visualize me being able to swallow with ease or rocking my body up into a sitting position.
37. Love me for who I am today. Don't hold me to being the person I was before. I have a different brain now.
38. Be protective of me but do not stand in the way of my progress.
39. Show me old video footage of me doing things to remind me about how I spoke, walked, and gestured.
40. Remember that my medications probably make me feel tired, as well as mask my ability to know what it feels like to be me.
(Bolte Taylor, 2006)
GET THE BOOK!!!! It says it is for anyone with a brain injury of any kind!
Saturday, July 31, 2010
Mom Update, July 31, 2010, Saturday Early Morning
It's early for an update, I know, but I came across an amazing book that I wanted to share with everyone (and to encourage anyone interested in traumatic brain injury of any kind, for any reason, to buy). I bought the book last summer so that I could add it to the recommended reading list for one of my undergraduate courses I teach, but hadn't read it yet. I found it while reorganizing my bookcases.
The book is written by a brain scientist from Harvard who had a stroke and was eventually able to write about the experience. The purpose of the book is to inform people about what happens to the brain (in brief, easy terms) after a traumatic brain injury and then how to help a person who encounters a traumatic brain injury. I haven't finished the book yet (so I realize I may be taking a bit of a risk recommending it now) but after reading several chapters, I am very impressed by it.
Title: "My Stroke of Insight: A Brain Scientist's Personal Journey"
Author: Jill Bolte Taylor, Ph.D.
Publisher: Viking (The Penguin Group)
Copyright: 2006
ISBN: 978-0-670-02074-4
Pages: 224
Cost: $10.20 via amazon.com
The book is already giving me both valuable insight on where my mom is now, as well as confirmation on where I believed she is now developmentally.
A MUST read for those interested in traumatic brain injury.
The book is written by a brain scientist from Harvard who had a stroke and was eventually able to write about the experience. The purpose of the book is to inform people about what happens to the brain (in brief, easy terms) after a traumatic brain injury and then how to help a person who encounters a traumatic brain injury. I haven't finished the book yet (so I realize I may be taking a bit of a risk recommending it now) but after reading several chapters, I am very impressed by it.
Title: "My Stroke of Insight: A Brain Scientist's Personal Journey"
Author: Jill Bolte Taylor, Ph.D.
Publisher: Viking (The Penguin Group)
Copyright: 2006
ISBN: 978-0-670-02074-4
Pages: 224
Cost: $10.20 via amazon.com
The book is already giving me both valuable insight on where my mom is now, as well as confirmation on where I believed she is now developmentally.
A MUST read for those interested in traumatic brain injury.
Friday, July 30, 2010
Mom Update, July 30, 2010, Friday
Jean (Claudia's son) is performing in a play (Urinetown at the James Street Players Community Theater in Babylon) that John (Claudia's husband) creatively and brilliantly directed. I saw the show both last night and tonight...and Jean is just fabulous!! This is probably the first show that he's in that mom isn't there in the audience to watch. Mom has done many, many shows there herself over the years; and being there watching Jean reminded me that mom is such a talented woman as well as our family's best supporter and cheerleader. It made me so proud of Jean and John being there tonight, but it was bittersweet without mom there too.
But the good news is that Mom had a really good day today!! Among all the now typical movements she does (both feet, head, ankles...), she also moved her left arm twice. Mom moved her hand to her face for the first time, all alone, today---and she kept moving it there and touching her lips and nose and cheek and even her eye once. One of her friends from choir came, Fay, and she sang 5 songs to mom. Samantha said that it looked like mom was mouthing some of the words to the songs! (Sam, Anthony, Con and Dad were there tonight. Lenny and I were there late afternoon into tonight too). Mom looked like she said, "What" when we called her and she mouthed, "Ow" several times during physical therapy on her fingers. Also, mom opened her eyes ALOT this evening!!! The longest was 2 minutes and 20 seconds. And when she opened them, though she gave a blank type of stare some of the time, she also looked right at Lenny and Anthony when they called her name and then she really studied them too! She did the same to Sammy once too! Maybe, dare I say that, she's getting there??!!!
I read this today, and it made me cry. It's a little long, but it's about hope and it is exactly what I believe.
HOPE
by Max Lucado
It’s one of the most compelling narratives in all of Scripture. So fascinating is the scene, in fact, that Luke opted to record it in detail.
Two disciples are walking down the dusty road to the village of Emmaus. Their talk concerns the crucified Jesus. Their words come slowly, trudging in cadence with the dirge-like pace of their feet.
“I can hardly believe it. He’s gone.”
“What do we do now?”
“It’s Peter’s fault, he shouldn’t have … ”
Just then a stranger comes up from behind and says, “I’m sorry, but I couldn’t help overhearing you. Who are you discussing?”
They stop and turn. Other travelers make their way around them as the three stand in silence. Finally one of them asks, “Where have you been the last few days? Haven’t you heard about Jesus of Nazareth?” And he continues to tell what has happened. (Luke 24:13-24)
This scene fascinates me—two sincere disciples telling how the last nail has been driven in Israel’s coffin. God, in disguise, listens patiently, his wounded hands buried deeply in his robe. He must have been touched at the faithfulness of this pair. Yet he also must have been a bit chagrined. He had just gone to hell and back to give heaven to earth, and these two were worried about the political situation of Israel.
“But we had hoped that he was the one who was going to redeem Israel.”
But we had hoped … How often have you heard a phrase like that?
“We were hoping the doctor would release him.”
“I had hoped to pass the exam.”
“We had hoped the surgery would get all the tumor.”
“I thought the job was in the bag.”
Words painted gray with disappointment. What we wanted didn’t come. What came, we didn’t want. The result? Shattered hope. The foundation of our world trembles.
We trudge up the road to Emmaus dragging our sandals in the dust, wondering what we did to deserve such a plight. “What kind of God would let me down like this?”
And yet, so tear-filled are our eyes and so limited is our perspective that God could be the fellow walking next to us and we wouldn’t know it.
You see, the problem with our two heavy-hearted friends was not a lack of faith, but a lack of vision. Their petitions were limited to what they could imagine—an earthly kingdom. Had God answered their prayer, had he granted their hope, the Seven-Day War would have started two thousand years earlier and Jesus would have spent the next forty years training his apostles to be cabinet members. You have to wonder if God’s most merciful act is his refusal to answer some of our prayers.
We are not much different than burdened travelers, are we? We roll in the mud of self-pity in the very shadow of the cross. We piously ask for his will and then have the audacity to pout if everything doesn’t go our way. If we would just remember the heavenly body that awaits us, we’d stop complaining that he hasn’t healed this earthly one.
Our problem is not so much that God doesn’t give us what we hope for as it is that we don’t know the right thing for which to hope. (You may want to read that sentence again.)
Hope is not what you expect; it is what you would never dream. It is a wild, improbable tale with a pinch-me-I’m-dreaming ending. It’s Abraham adjusting his bifocals so he can see not his grandson, but his son. It’s Moses standing in the promised land not with Aaron or Miriam at his side, but with Elijah and the transfigured Christ. It’s Zechariah left speechless at the sight of his wife Elizabeth, gray-headed and pregnant. And it is the two Emmaus-bound pilgrims reaching out to take a piece of bread only to see that the hands from which it is offered are pierced.
Hope is not a granted wish or a favor performed; no, it is far greater than that. It is a zany, unpredictable dependence on a God who loves to surprise us out of our socks and be there in the flesh to see our reaction.
From God Came Near: Chronicles of the Christ
Copyright (Thomas Nelson, 1985, 2004) Max Lucado
But the good news is that Mom had a really good day today!! Among all the now typical movements she does (both feet, head, ankles...), she also moved her left arm twice. Mom moved her hand to her face for the first time, all alone, today---and she kept moving it there and touching her lips and nose and cheek and even her eye once. One of her friends from choir came, Fay, and she sang 5 songs to mom. Samantha said that it looked like mom was mouthing some of the words to the songs! (Sam, Anthony, Con and Dad were there tonight. Lenny and I were there late afternoon into tonight too). Mom looked like she said, "What" when we called her and she mouthed, "Ow" several times during physical therapy on her fingers. Also, mom opened her eyes ALOT this evening!!! The longest was 2 minutes and 20 seconds. And when she opened them, though she gave a blank type of stare some of the time, she also looked right at Lenny and Anthony when they called her name and then she really studied them too! She did the same to Sammy once too! Maybe, dare I say that, she's getting there??!!!
I read this today, and it made me cry. It's a little long, but it's about hope and it is exactly what I believe.
HOPE
by Max Lucado
It’s one of the most compelling narratives in all of Scripture. So fascinating is the scene, in fact, that Luke opted to record it in detail.
Two disciples are walking down the dusty road to the village of Emmaus. Their talk concerns the crucified Jesus. Their words come slowly, trudging in cadence with the dirge-like pace of their feet.
“I can hardly believe it. He’s gone.”
“What do we do now?”
“It’s Peter’s fault, he shouldn’t have … ”
Just then a stranger comes up from behind and says, “I’m sorry, but I couldn’t help overhearing you. Who are you discussing?”
They stop and turn. Other travelers make their way around them as the three stand in silence. Finally one of them asks, “Where have you been the last few days? Haven’t you heard about Jesus of Nazareth?” And he continues to tell what has happened. (Luke 24:13-24)
This scene fascinates me—two sincere disciples telling how the last nail has been driven in Israel’s coffin. God, in disguise, listens patiently, his wounded hands buried deeply in his robe. He must have been touched at the faithfulness of this pair. Yet he also must have been a bit chagrined. He had just gone to hell and back to give heaven to earth, and these two were worried about the political situation of Israel.
“But we had hoped that he was the one who was going to redeem Israel.”
But we had hoped … How often have you heard a phrase like that?
“We were hoping the doctor would release him.”
“I had hoped to pass the exam.”
“We had hoped the surgery would get all the tumor.”
“I thought the job was in the bag.”
Words painted gray with disappointment. What we wanted didn’t come. What came, we didn’t want. The result? Shattered hope. The foundation of our world trembles.
We trudge up the road to Emmaus dragging our sandals in the dust, wondering what we did to deserve such a plight. “What kind of God would let me down like this?”
And yet, so tear-filled are our eyes and so limited is our perspective that God could be the fellow walking next to us and we wouldn’t know it.
You see, the problem with our two heavy-hearted friends was not a lack of faith, but a lack of vision. Their petitions were limited to what they could imagine—an earthly kingdom. Had God answered their prayer, had he granted their hope, the Seven-Day War would have started two thousand years earlier and Jesus would have spent the next forty years training his apostles to be cabinet members. You have to wonder if God’s most merciful act is his refusal to answer some of our prayers.
We are not much different than burdened travelers, are we? We roll in the mud of self-pity in the very shadow of the cross. We piously ask for his will and then have the audacity to pout if everything doesn’t go our way. If we would just remember the heavenly body that awaits us, we’d stop complaining that he hasn’t healed this earthly one.
Our problem is not so much that God doesn’t give us what we hope for as it is that we don’t know the right thing for which to hope. (You may want to read that sentence again.)
Hope is not what you expect; it is what you would never dream. It is a wild, improbable tale with a pinch-me-I’m-dreaming ending. It’s Abraham adjusting his bifocals so he can see not his grandson, but his son. It’s Moses standing in the promised land not with Aaron or Miriam at his side, but with Elijah and the transfigured Christ. It’s Zechariah left speechless at the sight of his wife Elizabeth, gray-headed and pregnant. And it is the two Emmaus-bound pilgrims reaching out to take a piece of bread only to see that the hands from which it is offered are pierced.
Hope is not a granted wish or a favor performed; no, it is far greater than that. It is a zany, unpredictable dependence on a God who loves to surprise us out of our socks and be there in the flesh to see our reaction.
From God Came Near: Chronicles of the Christ
Copyright (Thomas Nelson, 1985, 2004) Max Lucado
Mom Update, July 29, 2010, Thursday
Mom had another alert day. I visited with her early this morning and she opened her eyes for me for a minute and 20 secs. She also tried to open them a lot and then also had them open a sliver as well on and off. I did her Physical Therapy and she said, "Ow" several times when I was moving her ring and middle fingers on her left hand which now has the edema again. She liked the smell of dad's aftershave, the pumpkin candle and the vanilla today. Her response to smell is funny because she supposedly can't smell while she is on the vent...but she certainly appears to be sniffing at times. Perhaps she is actually smelling or she is just following my command to smell---either way, this is a good thing. Once you start her therapy, she begins to move around a lot and to become more alert. Dad and Lenny were with her this afternoon and did her physical therapy again. Con (Anthony's wife), Samantha (my niece) and dad returned to her again tonight (they did physical therapy, music on the IPOD, and touch items). Sam said she moved around a lot but was tired.
Sometimes, it's hard to know what, exactly, to do with mom. I mean, Claudia and I are special education teachers, so we go with a developmental view on learning. This means that you take any person, and don't particularly pay attention to much else than where that person is now, today, this moment...you look at what the person can and cannot do in relation to a developmental age as opposed to a chronological one. Once you find that person's developmental age (where the person is functioning now---example: an actual 20 year old who functions at a typical 3 year old level, or a 12 year old who functions at a 5 year old level...or whatever--and you pay attention to the age that indicates where the person is functioning now. You start there, at that functioning age and move forward in an effort to bridge the gap between how old the person actually is (chronological age) and where that person is functioning currently (developmental age). Based on this information, mom is sort of at an infant stimulation level...anything you would do with a typical infant, you do with mom now. Though, I believe that she understands the language we speak to her better than at an infant's level. So if anyone knows of anybody who can offer professional insight on therapies, please feel free to pass this blog along to others so that we can receive the information we need.
One of mom's friends from the James Street Players Community Theater group, Nancy, posted the blog sight (http://dottysupdates-kgranelli.blogspot.com) on her facebook account and she received this message and passed it on to Claudia and me. It encouraged me alot:
"Nancy, I just had a conversation with James Ciaravino (I'm sure you know he's a psychologist) a couple of weeks ago. We talked about TBI and granted I do not have it to the degree that Dottie does. He told me that the medical world is learning so much on this topic and their conclusion is that the brain is such an amazing organ that with the correct PT, it will find a way to compensate for the damaged areas. In other words, the good areas will take over for the damaged areas. If there is some way you can get this info to the Gilmans, I would appreciate it. I am exploring this myself."
Any professional or personal insights are very much welcomed. Thanks and keep praying....
"The human mind plans the way but the Lord directs the steps." Proverbs 16:9
Sometimes, it's hard to know what, exactly, to do with mom. I mean, Claudia and I are special education teachers, so we go with a developmental view on learning. This means that you take any person, and don't particularly pay attention to much else than where that person is now, today, this moment...you look at what the person can and cannot do in relation to a developmental age as opposed to a chronological one. Once you find that person's developmental age (where the person is functioning now---example: an actual 20 year old who functions at a typical 3 year old level, or a 12 year old who functions at a 5 year old level...or whatever--and you pay attention to the age that indicates where the person is functioning now. You start there, at that functioning age and move forward in an effort to bridge the gap between how old the person actually is (chronological age) and where that person is functioning currently (developmental age). Based on this information, mom is sort of at an infant stimulation level...anything you would do with a typical infant, you do with mom now. Though, I believe that she understands the language we speak to her better than at an infant's level. So if anyone knows of anybody who can offer professional insight on therapies, please feel free to pass this blog along to others so that we can receive the information we need.
One of mom's friends from the James Street Players Community Theater group, Nancy, posted the blog sight (http://dottysupdates-kgranelli.blogspot.com) on her facebook account and she received this message and passed it on to Claudia and me. It encouraged me alot:
"Nancy, I just had a conversation with James Ciaravino (I'm sure you know he's a psychologist) a couple of weeks ago. We talked about TBI and granted I do not have it to the degree that Dottie does. He told me that the medical world is learning so much on this topic and their conclusion is that the brain is such an amazing organ that with the correct PT, it will find a way to compensate for the damaged areas. In other words, the good areas will take over for the damaged areas. If there is some way you can get this info to the Gilmans, I would appreciate it. I am exploring this myself."
Any professional or personal insights are very much welcomed. Thanks and keep praying....
"The human mind plans the way but the Lord directs the steps." Proverbs 16:9
Wednesday, July 28, 2010
Mom Update, July 28, 2010, Wednesday
Mom had another pretty alert day today. Dad and I did her physical therapy, music, household and outdoor sounds, combed her hair, massaged her legs, arms, hands and feet, and did some aromatherapy.
She still likes dad's aftershave the best when we do aromatherapy. She continues to move a lot to sound--either through listening to voices (she turns toward them) or music (she sways back and forth with her head and moves both her feet).
The lady who cleans mom's room came in today---full of smiles and kisses and kind words. She is such a blessing. She speaks life to those around her and makes a difference in the lives of those she encounters. One of mom's nurses (a really sweet one) told me today that she just lost her mom a few weeks ago to a sudden, massive heart attack. She spoke about her dad and how lost he is without her and about how much she misses her mom. Keep her in your prayers. Her name is Elizabeth.
I made two foam supports for her---one incline piece for her arm and one small, low piece with cut outs for her ankles (so her feet or soles of them don't touch the bed).
Donna and Tom came to visit her today as well and the 3 of us (dad left for dinner and returned later in the evening with Aunt Carol) sat and talked to her and told her funny stories...then Donna and I did her physical therapy again. She opened her eyes, on her own, 6 times widely and many times just slightly. The longest she kept them open was 2 minutes and the least was 45 seconds. She is getting there. Tom commented on how much she has progressed since he last saw her weeks ago.
It's great to be with mom. I am so thankful that we still can be with her and she with us.
"Behold, how good and how pleasant it is for brethren to dwell together in unity!" Psalm 133:1
She still likes dad's aftershave the best when we do aromatherapy. She continues to move a lot to sound--either through listening to voices (she turns toward them) or music (she sways back and forth with her head and moves both her feet).
The lady who cleans mom's room came in today---full of smiles and kisses and kind words. She is such a blessing. She speaks life to those around her and makes a difference in the lives of those she encounters. One of mom's nurses (a really sweet one) told me today that she just lost her mom a few weeks ago to a sudden, massive heart attack. She spoke about her dad and how lost he is without her and about how much she misses her mom. Keep her in your prayers. Her name is Elizabeth.
I made two foam supports for her---one incline piece for her arm and one small, low piece with cut outs for her ankles (so her feet or soles of them don't touch the bed).
Donna and Tom came to visit her today as well and the 3 of us (dad left for dinner and returned later in the evening with Aunt Carol) sat and talked to her and told her funny stories...then Donna and I did her physical therapy again. She opened her eyes, on her own, 6 times widely and many times just slightly. The longest she kept them open was 2 minutes and the least was 45 seconds. She is getting there. Tom commented on how much she has progressed since he last saw her weeks ago.
It's great to be with mom. I am so thankful that we still can be with her and she with us.
"Behold, how good and how pleasant it is for brethren to dwell together in unity!" Psalm 133:1
Dotty's Updates: Our Family Journey through TBI: Mom Update, July 25, 2010, Sunday
Dotty's Updates: Our Family Journey through TBI: Mom Update, July 25, 2010, Sunday: "Hello Everyone! Still in Atlantic City until tomorrow but Dad and Lenny have been visiting mom all weekend and report that she has been slee..."
Dotty's Updates: Our Family Journey through TBI: Mom Update, July 26, 2010, Monday
Dotty's Updates: Our Family Journey through TBI: Mom Update, July 26, 2010, Monday: "Mom had a great few days... First, I forgot to mention that the doctor who met with dad on Friday said that he doesn't want mom to be shook..."
Dotty's Updates: Our Family Journey through TBI: Mom Update, July 27, 2010, Tuesday
Dotty's Updates: Our Family Journey through TBI: Mom Update, July 27, 2010, Tuesday: "Mom opened her eyes widely for dad in the morning, for Nancy, and the cousins (Frances, Arnie and Rosemarie) and Anthony, Con and Sam in the..."
Tuesday, July 27, 2010
Mom Update, July 27, 2010, Tuesday
Mom opened her eyes widely for dad in the morning, for Nancy, and the cousins (Frances, Arnie and Rosemarie) and Anthony, Con and Sam in the afternoon, and then again for me and John and Ava and Lenny and Dad in the later afternoon (1 minute 15 seconds). She moved her right arm and fingers, mouth, both feet and toes and ankles alot, Dad and Anthony said that she also lifted her left arm pretty high off the pillow too!! She seemed to be tracking Ava when she opened her eyes too---she did this by turning her head to follow Ava rather than moving her eyes and keeping her head still. Her IPOD with the earbuds in playing music really gets her going. It was so sweet this afternoon to watch Ava and Lenny, one on each side of her, talking to her and doing her physical therapy...the 2 new, up and coming special education teachers. Samantha wrote a beautiful letter to her in the "Love Notes for Dotty" book all about how we all need her so much. She was fairly alert this evening when I went back to visit her at 7:30ish too. Tonight, when we went to mom's favorite local restaurant, the waiter came over to find out how she was and told us not to "leave him out" of the loop of things.
"Be devoted to one another in brotherly love. Honor one another above yourselves" Romans 12:10
"Be devoted to one another in brotherly love. Honor one another above yourselves" Romans 12:10
Monday, July 26, 2010
Mom Update, July 26, 2010, Monday
Mom had a great few days...
First, I forgot to mention that the doctor who met with dad on Friday said that he doesn't want mom to be shook to become alert anymore. He said it could be dangerous (even though the doctors at North Shore did this). So remember not to shake her at all anymore.
Yesterday, Sunday, Mom's choir from church came to sing to her. Dad and Lenny and Terry were with mom and they said that the choir even brought a keyboard. They said mom moved her head and feet and arm during the singing and seemed to really enjoy it. Dad said they sang for 2 hours...I wish I could have seen mom as they sang to her. I began to cry when dad told me about it...and I couldn't help but think, "How could the workers in the rehab center not see how special mom is...how much she is loved...how wonderful she is..." What a blessing this was...not only to mom but I am sure to all the other patients in her wing. To any and all of you in her choir who may be reading this now...I thank you from the bottom of my heart. We all do.
Dad said that the nurse told him this morning, Monday, that when she entered mom's room this morning, mom's eyes were wide open!! And for a while too. Then, around 2:00 or so, dad said that mom opened her eyes for him as well.
When I arrived this evening at 7:45, I did mom's Physical therapy, combed her hair, kissed her, massaged her hand (right one has some edema again) and then I played her IPOD with the ear buds --- I let her listen to Phantom of the Opera...She bopped to the music as usual (feet moving, toes moving, right arm and hand moving, head too) and during the songs (45 minutes), mom opened her eyes for 1 - 1 1/2 minutes at a time with 10-20 minute breaks (eyes closed) in between...she kept this up for 45 minutes!! She was still alert when I left at 9:05!!
Maybe she is waking finally...I pray so.
Psalm 139
For the director of music. Of David. A psalm.
1 O LORD, you have searched me
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you know it completely, O LORD.
5 You hem me in—behind and before;
you have laid your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, [a] you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me
and the light become night around me,"
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
First, I forgot to mention that the doctor who met with dad on Friday said that he doesn't want mom to be shook to become alert anymore. He said it could be dangerous (even though the doctors at North Shore did this). So remember not to shake her at all anymore.
Yesterday, Sunday, Mom's choir from church came to sing to her. Dad and Lenny and Terry were with mom and they said that the choir even brought a keyboard. They said mom moved her head and feet and arm during the singing and seemed to really enjoy it. Dad said they sang for 2 hours...I wish I could have seen mom as they sang to her. I began to cry when dad told me about it...and I couldn't help but think, "How could the workers in the rehab center not see how special mom is...how much she is loved...how wonderful she is..." What a blessing this was...not only to mom but I am sure to all the other patients in her wing. To any and all of you in her choir who may be reading this now...I thank you from the bottom of my heart. We all do.
Dad said that the nurse told him this morning, Monday, that when she entered mom's room this morning, mom's eyes were wide open!! And for a while too. Then, around 2:00 or so, dad said that mom opened her eyes for him as well.
When I arrived this evening at 7:45, I did mom's Physical therapy, combed her hair, kissed her, massaged her hand (right one has some edema again) and then I played her IPOD with the ear buds --- I let her listen to Phantom of the Opera...She bopped to the music as usual (feet moving, toes moving, right arm and hand moving, head too) and during the songs (45 minutes), mom opened her eyes for 1 - 1 1/2 minutes at a time with 10-20 minute breaks (eyes closed) in between...she kept this up for 45 minutes!! She was still alert when I left at 9:05!!
Maybe she is waking finally...I pray so.
Psalm 139
For the director of music. Of David. A psalm.
1 O LORD, you have searched me
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you know it completely, O LORD.
5 You hem me in—behind and before;
you have laid your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, [a] you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me
and the light become night around me,"
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
Sunday, July 25, 2010
Mom Update, July 25, 2010, Sunday
Hello Everyone! Still in Atlantic City until tomorrow but Dad and Lenny have been visiting mom all weekend and report that she has been sleepy but alert later in the day on Friday (moving her feet, ankles, right arm and hand, head...to her IPOD music) and then sleepy after her shower on Saturday. Dad received a phone call from her doctor on Friday that he wanted to meet with dad. Dad and Anthony went to meet the doctor and he reported that mom is doing well and that we should continue to do all the therapies we are giving mom but that, they (the rehab center) would not be continuing any other therapies (except respiratory therapy) until mom is more alert on a steady basis (eyes open 5 minutes or more, tracking with eyes...). The facility wants to have a family meeting with us this week some time...no date yet (we don't know why they want to meet with us). Mom's progress continues. Keep the prayers coming. Thanks. xxxooo
"...oh prisoners of hope, even now I announce that I will restore twice as much to you." Zechariah 9:12
"...oh prisoners of hope, even now I announce that I will restore twice as much to you." Zechariah 9:12
Thursday, July 22, 2010
Mom Update, July 21, 2010, Wednesday Addendum
Some have asked why we are doing what we are doing with mom...and where did we get the ideas? Some of the ideas we found on the internet (coma stimulation plan), other ideas we received from the therapists (coma stimulation plan, physical therapy movements), still others we created on our own (sensory stimulation plan). Claudia and I are special education teachers...Claudia is a behavioral consultant. We just took what we know from our background training and applied it to mom. We both believe in a developmental approach to learning---this means start where the person is functioning now and move forward from there. Mom seems to be at an infant level in ways---so we are starting there.
Also---Mom's left arm (with the edema) is normal again today!!! Her left hand was a little puffy as were her fingers---but much better overall! PTL
Also---Mom's left arm (with the edema) is normal again today!!! Her left hand was a little puffy as were her fingers---but much better overall! PTL
Mom Update, July 21, 2010, Wednesday
"Let everything that has breath praise the Lord" Psalm 150:6
Today Mom was tired and sleepy earlier in the day and afternoon but by 5:00, she was more alert than sleepy---and more alert too at 10:20 p.m. when Lenny I and I came to see her again.
Today, Dad, Maureen and Flo Aubin were with mom in the early afternoon. Lenny came by in the mid afternoon too. We did her physical therapy (2 or 3 times over the course of the afternoon and evening), and aromatherapy (she was partial to vanilla the most, lemon second and frankincense third). We played Household and Outdoor Sounds CDs for her and she responded to all the sounds with a look of concentration on her face (a crinkle between her eyes on her forehead). She responded to the doorbell, telephone, lawnmower, children's voices playing, and pig sounds. She moved her left and right arms, hands, fingers, toes, feet, and ankles---not as much as typically but she moved all. During music (sound track from CHICAGO), she moved her head side to side in a slow motion Stevie Wonder type of way! and she moved her feet and ankles on both feet so much that I lost count!! She doesn't always start out strong in response to anything -- even music -- so sometimes she has to warm up first. She responded well tonight when Lenny and I prayed with her...she always responds to prayer...she likes to pray, you can tell by her response when you ask her, "Do you want to pray with me Mom?"
The speech therapist came to find me and dad today to tell us that she had already discharged mom from speech services. You may wonder how she or anyone would do speech with a person in the state that mom is in... easy. Speech, at this level, is the same as with an infant. You work on receptive language--or your ability to understand language---and so, you give commands for mom to follow, "Open your eyes" "Squeeze my hand" "Let go of my hand" "Wipe your chin" "Touch your face" or you work on receptive language through the senses---play sounds and tell mom what the sound is or touch mom with different textures and label the textures...this is receptive language skill work---this is speech therapy at this level. Expressively, we can get mom to try to communicate---in gestures, or saying, "ow" or trying to get her to say "no"... but this is all speech. When the speech therapist told us that she had discharged mom from speech...she said that she and the nurses, and the social worker and staff would be continually checking mom for "change" and that it is very typical to discharge a patient from a service one week and then reinstate them another week... an on/off type of cycle. So I asked her what "changes" she was hoping to see in order to give mom therapy again. She told me "Well, open her eyes just on command with no shaking or other stimulation than a voice or a nudge." "Like for 5 minutes at a time straight" (Mom has done 3 minutes twice in the last week) and that mom would "Follow voices with her eyes and track people with her eyes" I became frustrated. I asked how she thought this would happen? By magic? Would mom just go from eyes closed to eyes opened in a snap with no help, therapy or stimulation??? She replied that "could happen." I told her some research says it could but most says that the person needs stimulation and where would mom get that??? How was mom to improve or get better without the stimulation and therapy??? I became frustrated in the heat of the moment and told her I hoped nothing like this ever happens to her or her loved ones where they don't get any therapy or help. Though I knew she was going to say all this, I left the room in tears. Then I went outside and had a good cry with dad and Lenny, then with Flo and Maureen. I plan to call Medicare and Empire to see what they are billing mom for and to also see what she is entitled to and under what conditions. We need to be informed before we speak again. How sad the healthcare system is. How apathetic most of the staff is... not all for sure...but most. Where's the passion in what they do???
The biggest blessing today was Joyce, her roommate. Joyce was on a vent but is now off. She had pneumonia and her body is sort of curled up...she can't move well and often seemed to look confused when I'd say hello to her upon arriving at mom's room. I never heard or hear her speak. She has no children, husband, nieces, nephews, brothers, sisters...only 1 cousin. This cousin visits her several times a week (2 or so). She watches TV all day---channel 7. Anyway, the biggest blessing today was Joyce. For the first time today, Joyce said hi when I said hi...then she called me over to her bed and began to tell me all the things going on with mom today---things like, "She opened her eyes twice" and "She moved her feet" or "The speech person said she isn't doing speech with her anymore." She told me who came in the room and what they did and said too!! After the meeting with the speech person, Joyce spoke to Lenny too and told him that mom gets better therapy and treatment from us then she (Joyce) does from them and that she thinks mom is getting better. What a blessing...Joyce is doing the job the staff won't do!! She touched my heart.
Where's the pride and concern and passion in their work??? In touching lives?? It's up to us alone.
"Whatever your hand finds to do, do it with all your might" Ecclesiastes 9:10
Today Mom was tired and sleepy earlier in the day and afternoon but by 5:00, she was more alert than sleepy---and more alert too at 10:20 p.m. when Lenny I and I came to see her again.
Today, Dad, Maureen and Flo Aubin were with mom in the early afternoon. Lenny came by in the mid afternoon too. We did her physical therapy (2 or 3 times over the course of the afternoon and evening), and aromatherapy (she was partial to vanilla the most, lemon second and frankincense third). We played Household and Outdoor Sounds CDs for her and she responded to all the sounds with a look of concentration on her face (a crinkle between her eyes on her forehead). She responded to the doorbell, telephone, lawnmower, children's voices playing, and pig sounds. She moved her left and right arms, hands, fingers, toes, feet, and ankles---not as much as typically but she moved all. During music (sound track from CHICAGO), she moved her head side to side in a slow motion Stevie Wonder type of way! and she moved her feet and ankles on both feet so much that I lost count!! She doesn't always start out strong in response to anything -- even music -- so sometimes she has to warm up first. She responded well tonight when Lenny and I prayed with her...she always responds to prayer...she likes to pray, you can tell by her response when you ask her, "Do you want to pray with me Mom?"
The speech therapist came to find me and dad today to tell us that she had already discharged mom from speech services. You may wonder how she or anyone would do speech with a person in the state that mom is in... easy. Speech, at this level, is the same as with an infant. You work on receptive language--or your ability to understand language---and so, you give commands for mom to follow, "Open your eyes" "Squeeze my hand" "Let go of my hand" "Wipe your chin" "Touch your face" or you work on receptive language through the senses---play sounds and tell mom what the sound is or touch mom with different textures and label the textures...this is receptive language skill work---this is speech therapy at this level. Expressively, we can get mom to try to communicate---in gestures, or saying, "ow" or trying to get her to say "no"... but this is all speech. When the speech therapist told us that she had discharged mom from speech...she said that she and the nurses, and the social worker and staff would be continually checking mom for "change" and that it is very typical to discharge a patient from a service one week and then reinstate them another week... an on/off type of cycle. So I asked her what "changes" she was hoping to see in order to give mom therapy again. She told me "Well, open her eyes just on command with no shaking or other stimulation than a voice or a nudge." "Like for 5 minutes at a time straight" (Mom has done 3 minutes twice in the last week) and that mom would "Follow voices with her eyes and track people with her eyes" I became frustrated. I asked how she thought this would happen? By magic? Would mom just go from eyes closed to eyes opened in a snap with no help, therapy or stimulation??? She replied that "could happen." I told her some research says it could but most says that the person needs stimulation and where would mom get that??? How was mom to improve or get better without the stimulation and therapy??? I became frustrated in the heat of the moment and told her I hoped nothing like this ever happens to her or her loved ones where they don't get any therapy or help. Though I knew she was going to say all this, I left the room in tears. Then I went outside and had a good cry with dad and Lenny, then with Flo and Maureen. I plan to call Medicare and Empire to see what they are billing mom for and to also see what she is entitled to and under what conditions. We need to be informed before we speak again. How sad the healthcare system is. How apathetic most of the staff is... not all for sure...but most. Where's the passion in what they do???
The biggest blessing today was Joyce, her roommate. Joyce was on a vent but is now off. She had pneumonia and her body is sort of curled up...she can't move well and often seemed to look confused when I'd say hello to her upon arriving at mom's room. I never heard or hear her speak. She has no children, husband, nieces, nephews, brothers, sisters...only 1 cousin. This cousin visits her several times a week (2 or so). She watches TV all day---channel 7. Anyway, the biggest blessing today was Joyce. For the first time today, Joyce said hi when I said hi...then she called me over to her bed and began to tell me all the things going on with mom today---things like, "She opened her eyes twice" and "She moved her feet" or "The speech person said she isn't doing speech with her anymore." She told me who came in the room and what they did and said too!! After the meeting with the speech person, Joyce spoke to Lenny too and told him that mom gets better therapy and treatment from us then she (Joyce) does from them and that she thinks mom is getting better. What a blessing...Joyce is doing the job the staff won't do!! She touched my heart.
Where's the pride and concern and passion in their work??? In touching lives?? It's up to us alone.
"Whatever your hand finds to do, do it with all your might" Ecclesiastes 9:10
Tuesday, July 20, 2010
Mom Update, July 20, 2010, Tuesday
My day was crazy today so I didn't get to see mom...I have withdrawal...but thanks soooo much to our friends and family who went to see mom today!! Donna and Nancy and Aunt Carol saw mom (that I know of) and did her exercises. I can't wait to see her tomorrow. I pray her day went well. We are all so blessed with great friends and family.
"Love is kind..." 1 Corinthians 13:4
"Love is kind..." 1 Corinthians 13:4
Monday, July 19, 2010
Mom Update, July 19, 2010, Monday later in day
Thanks to everyone who pitched in to pull the slack today. Claudia can't see mom for a week since Claudia has a sinus infection---so Anthony and Con and the kids and Claudia's family can't see her either. (Doctor said that Vent Patients are highly susceptible to sickness and that, if the healthy family members in Claudia and Anthony's family's are still healthy in 3 days, they can see mom---but anyone who is or was sick can't see her for a week). Anyone who can come to see mom and run one of her exercise drills or just stimulate her is greatly appreciated. Dad and Aunt Carol can go see mom later in the afternoon on Tuesday. Donna is going from 11-1:00. I have student teachers again tomorrow and a proposal to write for work so I am not sure when I will get there.
Mom did well today. I did her Physical Therapy this morning early and she really had a look of concentration on her face as I did so! Unfortunately, her left hand hurt her when I manipulated it but, on the good side, she said, "OW!!" (or mouthed it) 10 times on her thumb and another 10 on her ring finger.
John sat with her and talked and kept her company this afternoon, along with dad and I later on. John and I did the "Household Sounds" CD with her and she seemed to respond a lot to the blow dryer sound! Then we did aromatherapy but no real response to that. I had her listen to Mama Mia on her IPOD as well. She moved her right arm and wiped her mouth on command 2 times. She moved both feet and her right hand too. Lots of facial expressions today!! She also looked like she was trying to blow out her mouth---this is new since the aneurysm but something she did a lot before it.
THE MEDICINE MYSTERY IS SOLVED!!! PTL!!!
A male nurse did come into mom's room and gave her a medicine that is used for both Parkinson's Disease and Diabetes... Mom had evidently had only a few doses of it when her sugar level was up (she doesn't have diabetes but levels were high on and off at North Shore) as a preventative!!! The confusion came from the head nurses at the nurse's station on Saturday evening who I spoke to---maybe they were new??? But they didn't handle the situation correctly on my end during our conversation and this caused all the confusion. Mom is not getting that medication any more.
This evening, Lenny and Dad and Aunt Carol went to see mom. Lenny did her Physical Therapy and reports that when he did her left hand, she said, "OW!" audibly but low. Then she also mouthed it as well. She fought Lenny when he was moving her right hand alot!! She moved against his manipulations. She opened her eyes 3 or 4 times today when shaken.
Oops! I got in the shower and realized that I left out the verse that is on my heart tonight....
"The Lord is my shepherd; I have all that I need. He lets me rest in green meadows; he leads me beside peaceful streams. He renews my strength." Psalm 23:1-3
Mom did well today. I did her Physical Therapy this morning early and she really had a look of concentration on her face as I did so! Unfortunately, her left hand hurt her when I manipulated it but, on the good side, she said, "OW!!" (or mouthed it) 10 times on her thumb and another 10 on her ring finger.
John sat with her and talked and kept her company this afternoon, along with dad and I later on. John and I did the "Household Sounds" CD with her and she seemed to respond a lot to the blow dryer sound! Then we did aromatherapy but no real response to that. I had her listen to Mama Mia on her IPOD as well. She moved her right arm and wiped her mouth on command 2 times. She moved both feet and her right hand too. Lots of facial expressions today!! She also looked like she was trying to blow out her mouth---this is new since the aneurysm but something she did a lot before it.
THE MEDICINE MYSTERY IS SOLVED!!! PTL!!!
A male nurse did come into mom's room and gave her a medicine that is used for both Parkinson's Disease and Diabetes... Mom had evidently had only a few doses of it when her sugar level was up (she doesn't have diabetes but levels were high on and off at North Shore) as a preventative!!! The confusion came from the head nurses at the nurse's station on Saturday evening who I spoke to---maybe they were new??? But they didn't handle the situation correctly on my end during our conversation and this caused all the confusion. Mom is not getting that medication any more.
This evening, Lenny and Dad and Aunt Carol went to see mom. Lenny did her Physical Therapy and reports that when he did her left hand, she said, "OW!" audibly but low. Then she also mouthed it as well. She fought Lenny when he was moving her right hand alot!! She moved against his manipulations. She opened her eyes 3 or 4 times today when shaken.
Oops! I got in the shower and realized that I left out the verse that is on my heart tonight....
"The Lord is my shepherd; I have all that I need. He lets me rest in green meadows; he leads me beside peaceful streams. He renews my strength." Psalm 23:1-3
Mom Update, July 19, 2010, Monday
Good Morning Friends and Family!!!
Just a note to ask for assistance from anyone who has time--- Claudia, Anthony and Samantha (who all come do day time exercises and stimulation with mom) are sick!!! Pray for their health please---head colds, fevers, sinus infections... Also, in their absence, we could use some help this week delivering exercises for mom---I have student teachers to observe today and tomorrow.
There is a clipboard on Mom's bedside rolling table---on the clipboard is a laminated list of exercises to do with mom---there are also 2 charts on the clipboard---one is to write your name, time, date, exercise you did and mom's alertness state...the other chart is to record how many times mom moves and does things like yawn, move her arms, legs, mouth.... Not complicated at all.
Any help that can be offered this week, especially today and tomorrow, would be great!!!
Thank you soooooo much for all you already do! Keep praying. Love Kath
"A friend loves at all times" Proverbs 17:17
Just a note to ask for assistance from anyone who has time--- Claudia, Anthony and Samantha (who all come do day time exercises and stimulation with mom) are sick!!! Pray for their health please---head colds, fevers, sinus infections... Also, in their absence, we could use some help this week delivering exercises for mom---I have student teachers to observe today and tomorrow.
There is a clipboard on Mom's bedside rolling table---on the clipboard is a laminated list of exercises to do with mom---there are also 2 charts on the clipboard---one is to write your name, time, date, exercise you did and mom's alertness state...the other chart is to record how many times mom moves and does things like yawn, move her arms, legs, mouth.... Not complicated at all.
Any help that can be offered this week, especially today and tomorrow, would be great!!!
Thank you soooooo much for all you already do! Keep praying. Love Kath
"A friend loves at all times" Proverbs 17:17
Sunday, July 18, 2010
Mom Update, July 18, 2010, Sunday
Mom had a really tired, sleepy day today. She was coughing a lot as well and had a temp of 100 in the morning---please pray for her health. After an awesome 10 days, she was tired today. However, she still opened her eyes when shook and kept them open for 40 seconds at one point. She still moved her mouth and ankles and fingers and feet...even though she was sleepy--the ability was still present, only the frequency decreased. She yawned a lot today and appeared to take in air once as well. It also sounded like she snored briefly too! Dad added his cologne to the smells we use for olfactory stimulation...she responded to it well.
She was lucky to have many visitors today: Claudia, John, Florence Aubin, Terry, Dad, me, Donna, Aunt Peggy, Barbara, Gig, Suzanne, Rita, and Lenny!!! And every visit was naturally spread out over the course of the day, so she was never alone for long.
Dad's back hurts him very badly, so please pray for him and his back (he is still, naturally, so distraught over my mom---sometimes I don't know what's harder, looking at mom or looking at him?).
Though we ran many of her stimulation programs, and she mildly responded (if at all), the one thing she enjoyed the most today was her music on her IPOD with headphones time. She loves her music!!! During music time (today was Mozart), mom moved both feet (left MORE than right!!!), both hands (right more than left), her head from side to side, and her mouth kept moving and going. As she moved her right foot to the music, she did so in an unusual way---sort of in the shape of a cross, or as though conducting an orchestra in a 4/4 pattern!! She never did that before. Her feet moved side to side in addition to up and down and she alternated these movements as well as doing them together with both feet at the same time. At one point, she lifted her entire left arm and hand right off the pillow!!!
"Surely God is my salvation; I will trust and not be afraid. The LORD, the LORD, is my strength and my song; he has become my salvation." Isaiah 12:2
She was lucky to have many visitors today: Claudia, John, Florence Aubin, Terry, Dad, me, Donna, Aunt Peggy, Barbara, Gig, Suzanne, Rita, and Lenny!!! And every visit was naturally spread out over the course of the day, so she was never alone for long.
Dad's back hurts him very badly, so please pray for him and his back (he is still, naturally, so distraught over my mom---sometimes I don't know what's harder, looking at mom or looking at him?).
Though we ran many of her stimulation programs, and she mildly responded (if at all), the one thing she enjoyed the most today was her music on her IPOD with headphones time. She loves her music!!! During music time (today was Mozart), mom moved both feet (left MORE than right!!!), both hands (right more than left), her head from side to side, and her mouth kept moving and going. As she moved her right foot to the music, she did so in an unusual way---sort of in the shape of a cross, or as though conducting an orchestra in a 4/4 pattern!! She never did that before. Her feet moved side to side in addition to up and down and she alternated these movements as well as doing them together with both feet at the same time. At one point, she lifted her entire left arm and hand right off the pillow!!!
"Surely God is my salvation; I will trust and not be afraid. The LORD, the LORD, is my strength and my song; he has become my salvation." Isaiah 12:2
Saturday, July 17, 2010
Mom Update, July 17, 2010, Saturday
Mom had a good day today but sleepy. She opened her eyes a few times on her own (2-3) and a few times when shaken. Dad and Terry saw her earlier and Claudia too. They did her Physical Therapy. I did her Physical Therapy again in the evening when I saw her. She made a lot of movement with her mouth tonight, especially when I did her physical therapy (the part where I touch each finger to her thumb individually). Funny. I did some aromatherapy---she responded most to the Frankincense smell. I washed her face and combed her hair, and rubbed her arm with the edema. She moved her left arm 2 times and her left foot/ankle 3 times tonight. She moved her head around a lot too. I played her IPOD for her, MOMMA MIA, but left the room when she listened and came back. Mom's nurse told me, dad and Claudia, that, when she came in this morning to work on mom, mom had her eyes wide open and was curiously looking all around the room!!! Just like she did with Claudia on Monday or Tuesday night!!!
(We filed a report about the medicine mix up and they are investigating it now.)
"My help comes from the LORD, the Maker of heaven and earth." Psalm 121:2
(We filed a report about the medicine mix up and they are investigating it now.)
"My help comes from the LORD, the Maker of heaven and earth." Psalm 121:2
Mom Update, July 16, 2010, Friday
Hi Everyone!
I was away upstate on Friday and returned today...so sorry about no update.
As reported by dad, mom had a tired day but still was able to wipe her face multiple times for Speech therapy on command. She also had a great report from the Respiratory Therapist as well. She opened her eyes a few times but not much. Dad was alone with mom all day yesterday. He also said that she moved her left foot, ankle and finger several times as well.
Things to add to your prayers for mom (in addition to her total healing, of course!)
1. Still a big mix-up over who is paying for the daily co-pay. The Medicare Supplement Plan we took out should do this...but for some reason, the Center is still insisting that the Plan won't pay...this is aggravating to me but, more importantly, it is worrisome to dad---he gets really upset and anxious and worried over this every time the Center's business office people come to him and tell him he has to find the money to pay.
(I also have told everyone there NOT to go to dad because I am handling this information...but they still go to dad and not me)
PRAY THE PAYMENT CONFUSION WILL STOP!
2. The few therapists who still give mom therapy (Speech, for one) are saying again that therapy will likely stop at the end of the week...!!!! How can mom improve without therapy??? We give her alot, but therapy from the Center's therapists will only contribute to her healing.
PRAY THE THERAPY WON'T STOP AND THAT MORE WILL BEGIN!!!! PRAY TO GET RID OF THE ATTITUDE OF OVERALL LACK OF CONCERN AND NO EFFORT TO TRY TO HELP MOM ON THE PART OF THE STAFF!!!! (therapy-wise)
3. The last item to pray for is that ALL staff members who encounter mom will know CLEARLY who she is!!
The first hour mom was there at the Center, a man came in to take a picture of her roommate for mom's medical file (thinking it was her!!!). We took care of this IMMEDIATELY!!!! Now, dad reports that a male nurse came in to give mom her MEDS yesterday---she isn't on ANY MEDS!! When dad questioned him, he told dad it was ordered from the hospital and he'd go check with the doctor. The nurse came back and said it was her Parkinson's med!!!!!!!!!!!!!!! Mom is NOT ON ANY SUCH MED!!!! We took care of this as well.
PRAY FOR IDENTITY CONFUSION TO STOP!!!!!!
This is some battle....your prayers hold us up to fight and continue....xxxxxxooooo Kath
"Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest." Matthew 11:28
I was away upstate on Friday and returned today...so sorry about no update.
As reported by dad, mom had a tired day but still was able to wipe her face multiple times for Speech therapy on command. She also had a great report from the Respiratory Therapist as well. She opened her eyes a few times but not much. Dad was alone with mom all day yesterday. He also said that she moved her left foot, ankle and finger several times as well.
Things to add to your prayers for mom (in addition to her total healing, of course!)
1. Still a big mix-up over who is paying for the daily co-pay. The Medicare Supplement Plan we took out should do this...but for some reason, the Center is still insisting that the Plan won't pay...this is aggravating to me but, more importantly, it is worrisome to dad---he gets really upset and anxious and worried over this every time the Center's business office people come to him and tell him he has to find the money to pay.
(I also have told everyone there NOT to go to dad because I am handling this information...but they still go to dad and not me)
PRAY THE PAYMENT CONFUSION WILL STOP!
2. The few therapists who still give mom therapy (Speech, for one) are saying again that therapy will likely stop at the end of the week...!!!! How can mom improve without therapy??? We give her alot, but therapy from the Center's therapists will only contribute to her healing.
PRAY THE THERAPY WON'T STOP AND THAT MORE WILL BEGIN!!!! PRAY TO GET RID OF THE ATTITUDE OF OVERALL LACK OF CONCERN AND NO EFFORT TO TRY TO HELP MOM ON THE PART OF THE STAFF!!!! (therapy-wise)
3. The last item to pray for is that ALL staff members who encounter mom will know CLEARLY who she is!!
The first hour mom was there at the Center, a man came in to take a picture of her roommate for mom's medical file (thinking it was her!!!). We took care of this IMMEDIATELY!!!! Now, dad reports that a male nurse came in to give mom her MEDS yesterday---she isn't on ANY MEDS!! When dad questioned him, he told dad it was ordered from the hospital and he'd go check with the doctor. The nurse came back and said it was her Parkinson's med!!!!!!!!!!!!!!! Mom is NOT ON ANY SUCH MED!!!! We took care of this as well.
PRAY FOR IDENTITY CONFUSION TO STOP!!!!!!
This is some battle....your prayers hold us up to fight and continue....xxxxxxooooo Kath
"Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest." Matthew 11:28
Mom Update, July 15, 2010
Dear Friends,
Today mom was sleepy. It took a lot to get her going. We could get her eyes open when we shook her. Kathy Zaner came by to sit with dad and Ava and I. It was great to see her and it made the time that we spent with mom today special. Just think about how great mom is that all of our friends and family have come to support her and us!
We started out the day with her physical therapy that we do with her. She did move her head and right arm. She also moved both feet at times. We played music and sang. She does have a preference for certain songs and her facial expression changes. At one point she let out a breath of air which you could actually hear! Dad and I both looked at each other and said, "Did you hear that!" There were a lot of interruptions today and we had to leave the room quite a few times. Shelby came late today and was able to get mom to wipe her face 3x. She will often hold the towel to her face and turn her face back and forth to wipe it. Ava brought a book to read to her and read quite a few chapters. Mom seemed to enjoy the reading and turned her head toward Ava when she was reading. We also played the "house sounds" CD and there were a few sounds that she seemed to recognize. She would turn her head toward the sound and change her expression. We ended the evening with more reading.
A nurse came by tonight and asked about mom; what happened to her to get this way and when did it all happen. She said she only works a few days a week but always gets mom to take care of. She said that she is totally making progress and that she could see the difference each time she comes. She asked what we are doing with her!!! Long story!!! Oh yea, and yesterday Con's friend from work came by. I never met her before and she wanted to know what she could do if she were to come by!
"Two are better than one, because they have a good return for their work. If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up!"
Ecclesiastes 4:9-10
Today mom was sleepy. It took a lot to get her going. We could get her eyes open when we shook her. Kathy Zaner came by to sit with dad and Ava and I. It was great to see her and it made the time that we spent with mom today special. Just think about how great mom is that all of our friends and family have come to support her and us!
We started out the day with her physical therapy that we do with her. She did move her head and right arm. She also moved both feet at times. We played music and sang. She does have a preference for certain songs and her facial expression changes. At one point she let out a breath of air which you could actually hear! Dad and I both looked at each other and said, "Did you hear that!" There were a lot of interruptions today and we had to leave the room quite a few times. Shelby came late today and was able to get mom to wipe her face 3x. She will often hold the towel to her face and turn her face back and forth to wipe it. Ava brought a book to read to her and read quite a few chapters. Mom seemed to enjoy the reading and turned her head toward Ava when she was reading. We also played the "house sounds" CD and there were a few sounds that she seemed to recognize. She would turn her head toward the sound and change her expression. We ended the evening with more reading.
A nurse came by tonight and asked about mom; what happened to her to get this way and when did it all happen. She said she only works a few days a week but always gets mom to take care of. She said that she is totally making progress and that she could see the difference each time she comes. She asked what we are doing with her!!! Long story!!! Oh yea, and yesterday Con's friend from work came by. I never met her before and she wanted to know what she could do if she were to come by!
"Two are better than one, because they have a good return for their work. If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up!"
Ecclesiastes 4:9-10
Thursday, July 15, 2010
Mom Update, June 4, 2010, Friday
They put the feeding tube in for mom today. She has a drain at the top of her head and it is working well to relieve the pressure of the bleeding. She is running a temperature most likely from a urinary tract infection. She is still critical but stable. Please continue to pray.
Mom Update, June 3, 2010, Thursday
Mom is stable but very critical still. She is in the Neurosurgical Care Unit. She is monitored by her own nurse (who is assigned only to her) 24/7. She is not awake or moving. Dad is distraught...please pray for him and us. We are with her all day together. Will keep you updated. Love Kath
Mom Update, June 2, 2010, Wednesday
Today is Lenny's graduation from McGann-Mercy High School and Ava's Prom. Pray for us all...neither one of them wants to do anything with mom in the hospital. Mom had her procedures today. The doctors said that the COIL procedure worked. This is good because it is less invasive than open brain surgery. Mom is on a vent now as standard procedure and is heavily sedated because of the vent with breathing tube through her mouth. The drain seems to be working but she may need a shunt down the road...a trachiotomy may also follow as well. They don't know how she will be until she wakes up. Her blood pressure is being monitored and controlled by a machine. She has a catheter and they will be putting a feeding tube into her stomach in the next few days. Please pray.
Mom Update, June 1, 2010, Tuesday
My God...help us. Mom had a cerebral aneurysm that burst today. We all had been upstate this past Memorial Day weekend. It was a great time. We kids came home on Monday, Memorial Day, but Dad and Mom stayed until the next day, today, Tuesday, June 1. They stopped in New Jersey on their way home to pick up Aunt Sophie. Once they got home, Mom unpacked, started the laundry and dinner, and phoned Aunt Carol about going to Curves the next day (this was about 5:10 p.m.). She had also called me about 8 times on the way home from upstate today, which was strange for her to do. About 10 minutes after her call to Aunt Carol, she was at the dining room table with Aunt Sophie and Dad eating dinner, when she complained suddenly of a really, really bad headache---she asked Dad to get her something. Before Dad could leave the table and go down the hall, Aunt Sophie yelled that mom had fainted. Aunt Sophie caught mom (mom was in a chair sitting when she fainted---Aunt Sophie is 93), while dad phoned 911. They both brought her to the floor. Dad called Claudia and John next. When they arrived, John went in and would not let Claudia go in because mom had a seizure. The ambulance took her to our local hospital. Claudia tried to reach me but couldn't because I was just leaving the SJC graduation at the Nassau Coliseum when this happened. I rushed to the hospital after receiving her messages. We don't know much yet. The aneurysm burst. Mom was sent to North Shore University Hospital late tonight. We arrived there at 9:30. Mom can still speak and answer questions but it's not clear if she knows who we all are...When asked to name the day, date, month, year, her name, the President's name, and where she is---she could do all that. She never lost consciousness. The doctors did CAT scans and see the exact location of the burst (just behind and between her eyes) and they feel she can wait until tomorrow for them to operate. They will go in initially through her main artery and up into her head to assess what is fully happening. Once there, they will decide if they can COIL the area or if they need to open her head and perform more extensive surgery. Tonight, they put in a drain at the top of her head to relieve pressure from the bleeding. They explained that pressure in the head between the brain and the skull pushes the brain down onto the spinal cord at the neck area and this is dangerous---it can result in severe brain damage or death. So far, they feel a drain will do the job---they don't think they need to open her cranium (remove a piece of skull at the top of the head) to relieve the pressure. She is scheduled for the operation on Wednesday, June 2 at 8 a.m. or so. Please pray for mom....tell everyone you know to pray...Watch for more e-mail updates. Love Kath
Mom Update, June 5, 2010, Saturday
Today is Ava's graduation from Trinity High School. She is in the choir and singing a solo/duet; a song from the musical, "WICKED" called, "For Good." As she sang, we all cried so hard. Mom would have been so proud of her. We all have been blessed with the gift of song--this comes from mom. Every time I sing, she is alive in me. We spent the day at Claudia's and then all visited mom.
Wednesday, July 14, 2010
Mom Update, June 6, 2010, Sunday
Just a quick update on my mom's condition...she makes minimal
> progress each
> day. She is still on the ventilator and this is the biggest
> obstacle
> now---because she is on the vent, she needs heavy sedation,
> which makes it hard
> to see her progress and responses...she is breathing with 29%
> assistance
> from the vent and has not been able to breath on her own
> without it thusfar.
> She is able to move her right side freely and also on command,
> but her left
> side is slow, not moving nearly as much as the right and can't
> move on
> command. She is not conscious but this is due to the sedation
> mainly. She
> opens her eyes sometimes but not frequently. Keep praying. It
> is a miracle that
> she has made it this far already.
>
> progress each
> day. She is still on the ventilator and this is the biggest
> obstacle
> now---because she is on the vent, she needs heavy sedation,
> which makes it hard
> to see her progress and responses...she is breathing with 29%
> assistance
> from the vent and has not been able to breath on her own
> without it thusfar.
> She is able to move her right side freely and also on command,
> but her left
> side is slow, not moving nearly as much as the right and can't
> move on
> command. She is not conscious but this is due to the sedation
> mainly. She
> opens her eyes sometimes but not frequently. Keep praying. It
> is a miracle that
> she has made it this far already.
>
Mom Update, June 7, 2010, Monday
Hello Everyone,
Spoke with her doctor today and he said that her CAT Scans and chest x-rays are fine. No evidence of strokes or pneumonia. She is still running a temp on and off. His concern is that she is not waking up as they would like her to. The temp and her not waking up could be due to her age and/or also the fact that they determined that she was having minor, tiny seizures. They are medicating her for the seizures now. He said to be "patient, patient, patient." She will need a shunt down the road. If she is not awake and breathing on her own by the end of the week, she will need a trachiotomy. They are weaning her from the heavy sedation and, at this point, her inability to wake up is not due to the sedation anymore. I asked if there is a chance she may never wake up and the doctor said she will wake up it is just taking a while.
Keep praying!
Love
Kath
Spoke with her doctor today and he said that her CAT Scans and chest x-rays are fine. No evidence of strokes or pneumonia. She is still running a temp on and off. His concern is that she is not waking up as they would like her to. The temp and her not waking up could be due to her age and/or also the fact that they determined that she was having minor, tiny seizures. They are medicating her for the seizures now. He said to be "patient, patient, patient." She will need a shunt down the road. If she is not awake and breathing on her own by the end of the week, she will need a trachiotomy. They are weaning her from the heavy sedation and, at this point, her inability to wake up is not due to the sedation anymore. I asked if there is a chance she may never wake up and the doctor said she will wake up it is just taking a while.
Keep praying!
Love
Kath
Mom Update, June 8, 2010, Tuesday
Hello Everyone,
Thanks for all the prayers---they worked! PTL!! We started the day with a call from the doctors at North Shore telling us to gather the family and hurry over to the hospital--that mom had taken a turn for the worst. Evidently, the problem was that she was "not responding at all." They ran an emergency CAT Scan with contrast dye. Here are the current details:
-CAT Scan shows good blood flow to the brain and no further insult/injury to the brain other than initial aneurysm
-Chest xray clear
-She is still running a temp on and off (today's went as high as 102)
-She has a bronchial infection (from tube from vent or whatever they don't know yet)
-She has a urinary tract infection (from catheter--common)
-Doctors don't know exact "bugs" yet that are infecting her, but started general antibiotics and are currently culturing the mucus and urine to determine exact type of infection
-All infections are treatable
-Infections can come on quite severely and suddenly
-Infections don't look like staph
-Nonresponsiveness happens but the cause is sometimes cerebral hemorrhaging, stroke, grand mal seizures...(mom had none thank God)
-Seems her unresponsiveness was not all neurological---but physical from fever from infections
-Looking into possibility of Trach later in week
-If she gets Trach--better for breathing (sleep apnea), better for no irritations...
-Blood work looks good
When I left tonight, Mom was able to move all limbs...(not great, but movement), still running temp but lower, looked more alert (yet eyes still closed), best news---she gave me a very irritated look with eyes closed and slowly jerked her head away from me when I was trying to wipe her mouth!!! She was disgusted with what I was doing---a good thing.
Keep praying...prayer works.
Love
Kathy
Thanks for all the prayers---they worked! PTL!! We started the day with a call from the doctors at North Shore telling us to gather the family and hurry over to the hospital--that mom had taken a turn for the worst. Evidently, the problem was that she was "not responding at all." They ran an emergency CAT Scan with contrast dye. Here are the current details:
-CAT Scan shows good blood flow to the brain and no further insult/injury to the brain other than initial aneurysm
-Chest xray clear
-She is still running a temp on and off (today's went as high as 102)
-She has a bronchial infection (from tube from vent or whatever they don't know yet)
-She has a urinary tract infection (from catheter--common)
-Doctors don't know exact "bugs" yet that are infecting her, but started general antibiotics and are currently culturing the mucus and urine to determine exact type of infection
-All infections are treatable
-Infections can come on quite severely and suddenly
-Infections don't look like staph
-Nonresponsiveness happens but the cause is sometimes cerebral hemorrhaging, stroke, grand mal seizures...(mom had none thank God)
-Seems her unresponsiveness was not all neurological---but physical from fever from infections
-Looking into possibility of Trach later in week
-If she gets Trach--better for breathing (sleep apnea), better for no irritations...
-Blood work looks good
When I left tonight, Mom was able to move all limbs...(not great, but movement), still running temp but lower, looked more alert (yet eyes still closed), best news---she gave me a very irritated look with eyes closed and slowly jerked her head away from me when I was trying to wipe her mouth!!! She was disgusted with what I was doing---a good thing.
Keep praying...prayer works.
Love
Kathy
Mom Update, June 9, 2010, Wednesday
They found out the type of organism/bug that is infecting mom and are now treating it with a specific antibiotic just for that strain since 2 p.m. today.
-Mom has a bladder infection and trachial bronchitis (both same bug/organism and most likely due to the tubes in throat and urethra)
-CT Scan with contrast, done yesterday, shows no basal spasms (good thing), no further damage to brain around site of aneurysm, but did show signs of a small stroke on the right side of the brain deep in the brain (this could be causing her slow motion on the left side of her body)
-She is still responding to pain and moving all limbs on both sides but right side is stronger than left
-Stroke could be due to poor collaterals (these are veins in same area that "cover" for each other when one vein is damaged..)
-They are weaning her blood pressure back down to normal and maintaining that beginning today (they were raising her pressure to "flush out" the veins in her head)
-There are no signs of pneumonia
-She still has a temp and it was 102 from 2-6 p.m. and rose to 103 at 8 p.m. (pray to rid her of this fever). They put ice packs all over her to get the temp down and may use an ice blanket if need be
-The stroke occurred some time after the aneurysm as per the CT Scan information
-Tomorrow, Thursday, at 7:30 a.m., they are doing a trachiotomy
-Friday, at 7:00 a.m., they are doing a PEG (percutaneous endoscopic gastrostomy tube). This is a tube that goes right into the stomach from the outside for feeding.
-The tubes in mouth and nose will be removed. This allows her to breath more naturally and she also won't be gagging from the other tube in her mouth any more.
-These tubes (trach and gastrostomy) are temporary, not long term. The trach hole takes 4-5 days to heal and close once removed. The gastrostomy tube takes 1-2 days to heal after removal
-They don't know the full damage from the stroke until she wakes up
Keep praying...thanks ever so much!
Love
Kath
-Mom has a bladder infection and trachial bronchitis (both same bug/organism and most likely due to the tubes in throat and urethra)
-CT Scan with contrast, done yesterday, shows no basal spasms (good thing), no further damage to brain around site of aneurysm, but did show signs of a small stroke on the right side of the brain deep in the brain (this could be causing her slow motion on the left side of her body)
-She is still responding to pain and moving all limbs on both sides but right side is stronger than left
-Stroke could be due to poor collaterals (these are veins in same area that "cover" for each other when one vein is damaged..)
-They are weaning her blood pressure back down to normal and maintaining that beginning today (they were raising her pressure to "flush out" the veins in her head)
-There are no signs of pneumonia
-She still has a temp and it was 102 from 2-6 p.m. and rose to 103 at 8 p.m. (pray to rid her of this fever). They put ice packs all over her to get the temp down and may use an ice blanket if need be
-The stroke occurred some time after the aneurysm as per the CT Scan information
-Tomorrow, Thursday, at 7:30 a.m., they are doing a trachiotomy
-Friday, at 7:00 a.m., they are doing a PEG (percutaneous endoscopic gastrostomy tube). This is a tube that goes right into the stomach from the outside for feeding.
-The tubes in mouth and nose will be removed. This allows her to breath more naturally and she also won't be gagging from the other tube in her mouth any more.
-These tubes (trach and gastrostomy) are temporary, not long term. The trach hole takes 4-5 days to heal and close once removed. The gastrostomy tube takes 1-2 days to heal after removal
-They don't know the full damage from the stroke until she wakes up
Keep praying...thanks ever so much!
Love
Kath
Mom Update, June 10, 2010, Thursday
Hello Everyone,
MOM OPENED HER EYES TODAY!!!!!!!!!!!! PTL
Thank you so much for all the prayers...they are working. While I know that these e-mails are too much information for some of you, others ask for the details...I am trying to learn how to set up a blog that people can visit instead but have no time yet to figure it out...so in the meantime, e-mail it is.
Mom had the vent tube removed from her mouth, throat...today and had a tracheotomy put in instead this morning. The procedure took about 30 minutes. She came through it wonderfully. PTL
This will enable her to be more comfortable and it also should alleviate the infection in her trachea.
She still has the bladder infection and tracheal bronchitis but her fever is down to 100 now today.
It seems inevitable that she will need a shunt to drain fluid from the brain sometime next week. It is not noticeable from the outside and she will have it forever. It drains the fluid from her head down her throat to the stomach and out the body. Right now, she has a drain in the top of her head (on the outside). The doctors would like to see how she does without the drain before doing the shunt...but she has to be awake enough to complete a neurological evaluation first.
Tomorrow, Mom will have the PEG (feeding tube inserted in stomach) procedure at 7:00 a.m. It should take about 20 minutes to complete. This will allow her to not have the nasal feeding tube any more...which again, will be more comfortable.
The best news today is that Mom opened her eyes!!! Nine times to be exact. Though she is unable to keep them open long due to the sedation, antibiotic, tired state after surgeries/procedures...she did, indeed, open them. When they were opened, she looked alert and was definitely speaking to us through her gaze---it wasn't an empty stare---there was emotion in her eyes. While she is still not able to talk---due to the trach-- this is BIG progress.
She still moves the right side more than the left, though the doctors report that she moves the left with pain stimulus.
KEEP PRAYING!!!! We can't thank you all enough for this.
Some have asked how this all happened and when---last week, Tuesday, June 1, Mom and Dad had just returned from a long weekend upstate at the trailer. They picked up Aunt Sophie (93 years old) on the way back. All 3 were home about 45 minutes and had just sat down to eat dinner when Mom suddenly complained of an excruciating headache---within minutes, she feel over (Aunt Sophie caught her!!!), went unconscious, had a seizure...the ambulance crew came quickly and brought her to the hospital.
As I said...keep praying.
Thanks and Much Love
Kathy
MOM OPENED HER EYES TODAY!!!!!!!!!!!! PTL
Thank you so much for all the prayers...they are working. While I know that these e-mails are too much information for some of you, others ask for the details...I am trying to learn how to set up a blog that people can visit instead but have no time yet to figure it out...so in the meantime, e-mail it is.
Mom had the vent tube removed from her mouth, throat...today and had a tracheotomy put in instead this morning. The procedure took about 30 minutes. She came through it wonderfully. PTL
This will enable her to be more comfortable and it also should alleviate the infection in her trachea.
She still has the bladder infection and tracheal bronchitis but her fever is down to 100 now today.
It seems inevitable that she will need a shunt to drain fluid from the brain sometime next week. It is not noticeable from the outside and she will have it forever. It drains the fluid from her head down her throat to the stomach and out the body. Right now, she has a drain in the top of her head (on the outside). The doctors would like to see how she does without the drain before doing the shunt...but she has to be awake enough to complete a neurological evaluation first.
Tomorrow, Mom will have the PEG (feeding tube inserted in stomach) procedure at 7:00 a.m. It should take about 20 minutes to complete. This will allow her to not have the nasal feeding tube any more...which again, will be more comfortable.
The best news today is that Mom opened her eyes!!! Nine times to be exact. Though she is unable to keep them open long due to the sedation, antibiotic, tired state after surgeries/procedures...she did, indeed, open them. When they were opened, she looked alert and was definitely speaking to us through her gaze---it wasn't an empty stare---there was emotion in her eyes. While she is still not able to talk---due to the trach-- this is BIG progress.
She still moves the right side more than the left, though the doctors report that she moves the left with pain stimulus.
KEEP PRAYING!!!! We can't thank you all enough for this.
Some have asked how this all happened and when---last week, Tuesday, June 1, Mom and Dad had just returned from a long weekend upstate at the trailer. They picked up Aunt Sophie (93 years old) on the way back. All 3 were home about 45 minutes and had just sat down to eat dinner when Mom suddenly complained of an excruciating headache---within minutes, she feel over (Aunt Sophie caught her!!!), went unconscious, had a seizure...the ambulance crew came quickly and brought her to the hospital.
As I said...keep praying.
Thanks and Much Love
Kathy
Mom Update, June 11, 2010, Friday
-Mom ran a temp of 103 during the night and into early morning
-They see an infection in her blood but think it is from her IV, so they changed IV around midnight and flushed it out and put in new IV and let it run and cultured it again...if clear, it was the IV--will have results tomorrow morning.
-After high temp of 103.1 early this morning....packed her in ice to bring it down and it was 100.5 all day but rose to 102 by 8:30 when Claudia and I left tonight
-The PEG (stomach feeding tube) procedure was done today and all went well. No more tube feeding through the nose.
-They did another procedural CAT Scan
-They started Occupational and Physical Therapies now and splinted her left arm so that it doesn't cramp into a curled position...while splint is off, we do exercises with her.
-She is still responding to pain on both sides, with right side being the stronger of the 2 sides; but did not respond to commands
-Her eyes stayed closed today...no opening them...while I was disappointed about this, the nurse and respiratory therapist said this is likely due to the antibiotics, infection, her age, the fever, or the seizure medication. They said she had been through a lot in the last 24 hours with both procedures on top of all else.
-Monitoring her on EEG again to see if there is still seizure activity---if not, they want to stop the seizure meds because they can make her sleepy too
Keep praying. xxxooo
Kath
-They see an infection in her blood but think it is from her IV, so they changed IV around midnight and flushed it out and put in new IV and let it run and cultured it again...if clear, it was the IV--will have results tomorrow morning.
-After high temp of 103.1 early this morning....packed her in ice to bring it down and it was 100.5 all day but rose to 102 by 8:30 when Claudia and I left tonight
-The PEG (stomach feeding tube) procedure was done today and all went well. No more tube feeding through the nose.
-They did another procedural CAT Scan
-They started Occupational and Physical Therapies now and splinted her left arm so that it doesn't cramp into a curled position...while splint is off, we do exercises with her.
-She is still responding to pain on both sides, with right side being the stronger of the 2 sides; but did not respond to commands
-Her eyes stayed closed today...no opening them...while I was disappointed about this, the nurse and respiratory therapist said this is likely due to the antibiotics, infection, her age, the fever, or the seizure medication. They said she had been through a lot in the last 24 hours with both procedures on top of all else.
-Monitoring her on EEG again to see if there is still seizure activity---if not, they want to stop the seizure meds because they can make her sleepy too
Keep praying. xxxooo
Kath
mom Update, June 12, 2010, Saturday
Mom's temp was 99 in the morning (a first!). It remained 100.4 all afternoon and early evening and then rose to 101 by 6:30 p.m. so it seems that we are making progress with the infections finally.
She was put on a new sedation today; one that is used more for anti-anxiety purposes rather than sleep. This is due to the fact that she is more and more "awake" each day (though her eyes are still closed); so this is a good thing (though it still causes some degree of sleepiness).
She is still on the seizure medication, and morphine for pain (both of which cause sleepiness).
(Looks like no seizure activity was evidenced on the EEG scan they did).
The blood infection appeared to be from the site of the IV line; this is good as well, because it appears to have cleared up almost totally (though her white blood cell count was slightly elevated). Since her white cell count was up slightly, the doctors decided to change the IV line to a different location and side of the body as a precaution. Another blood sample is being cultured now.
Mom continued to be in a sleepy state today...which is discouraging, though we know the cause of the sleepiness. You can definitely tell when she is alert as opposed to asleep by looking at her face and movements, even though her eyes remain shut (when she is in her alert state, her eyeballs move a lot beneath the surface of her eyelids, she makes faces, her lips move slightly and so does her tongue within her mouth, she faces the speaker, and moves her right side of her body a great deal in response to spoken words).
The next hurdle for her will be the drain in her head. There is a drain inserted into the top of her head, at the crown, that drains excess fluid from the brain. Unless she wakes up enough to participate in a complete neurological evaluation, she will need to have a shunt put in her head some time next week. The shunt will remain in her head forever. It is unseen from the outside, and she won't know she even has one.
Thanks to all who contributed toward making Lenny and Ava's graduations and party the peaceful, supportive, together times they were. It meant a lot to us all.
Keep praying!!!! We all need your prayers so very much to get through each day.
Love
Kath
She was put on a new sedation today; one that is used more for anti-anxiety purposes rather than sleep. This is due to the fact that she is more and more "awake" each day (though her eyes are still closed); so this is a good thing (though it still causes some degree of sleepiness).
She is still on the seizure medication, and morphine for pain (both of which cause sleepiness).
(Looks like no seizure activity was evidenced on the EEG scan they did).
The blood infection appeared to be from the site of the IV line; this is good as well, because it appears to have cleared up almost totally (though her white blood cell count was slightly elevated). Since her white cell count was up slightly, the doctors decided to change the IV line to a different location and side of the body as a precaution. Another blood sample is being cultured now.
Mom continued to be in a sleepy state today...which is discouraging, though we know the cause of the sleepiness. You can definitely tell when she is alert as opposed to asleep by looking at her face and movements, even though her eyes remain shut (when she is in her alert state, her eyeballs move a lot beneath the surface of her eyelids, she makes faces, her lips move slightly and so does her tongue within her mouth, she faces the speaker, and moves her right side of her body a great deal in response to spoken words).
The next hurdle for her will be the drain in her head. There is a drain inserted into the top of her head, at the crown, that drains excess fluid from the brain. Unless she wakes up enough to participate in a complete neurological evaluation, she will need to have a shunt put in her head some time next week. The shunt will remain in her head forever. It is unseen from the outside, and she won't know she even has one.
Thanks to all who contributed toward making Lenny and Ava's graduations and party the peaceful, supportive, together times they were. It meant a lot to us all.
Keep praying!!!! We all need your prayers so very much to get through each day.
Love
Kath
Mom Update, June 13, 2010, Sunday
Today was the 13th of the month--Mom's favorite number (her birthday,
Claudia's birthday, Jean's birthday, mom and dad's anniversary...), so dad
thought she'd wake up today...but she didn't.
-She was uncomfortable early this morning when Claudia and John were there
so the nurse pulled back on stomach tube and saw she wasn't absorbing the
"food" so the nurse put a drain in the stomach tube and manipulated her
belly to get stuff out.
-They lowered the sedation and she became even more agitated and had
labored breathing. Because of this, she was given morphine and propofol (heavier
sedation). She was calmer.
-She was very cold to the touch (ice cold) but had 101.3 fever all day
-Second set of blood culture is negative.
-Urine culture is negative!
-She is now backed up in the bowels. Xray showed back up but not impacted.
Gave her something to help with that.
When dad, Terry, Aunt Sophie and I went back to see her this evening, she
was asleep...as she was, evidently, all day (due to the meds). As I said,
you can tell when she is asleep vs. alert even with her eyes closed. She
didn't respond to us at all today...but really doped up.
Thank God that tomorrow is a new day!
Claudia's birthday, Jean's birthday, mom and dad's anniversary...), so dad
thought she'd wake up today...but she didn't.
-She was uncomfortable early this morning when Claudia and John were there
so the nurse pulled back on stomach tube and saw she wasn't absorbing the
"food" so the nurse put a drain in the stomach tube and manipulated her
belly to get stuff out.
-They lowered the sedation and she became even more agitated and had
labored breathing. Because of this, she was given morphine and propofol (heavier
sedation). She was calmer.
-She was very cold to the touch (ice cold) but had 101.3 fever all day
-Second set of blood culture is negative.
-Urine culture is negative!
-She is now backed up in the bowels. Xray showed back up but not impacted.
Gave her something to help with that.
When dad, Terry, Aunt Sophie and I went back to see her this evening, she
was asleep...as she was, evidently, all day (due to the meds). As I said,
you can tell when she is asleep vs. alert even with her eyes closed. She
didn't respond to us at all today...but really doped up.
Thank God that tomorrow is a new day!
Mom Update, June 14, 2010, Monday
Mom was more alert when dad and I went to see her today. She opened her eyes for us once and responded through facial expression, mouth movement and moving her arm and hand and leg and foot on the right side.
The Social Worker came to talk to us about moving her to a rehab center in about a week or so. Dad, Anthony, Claudia and I are looking at one tomorrow, and one on Wednesday evening. The rehab center will work aggressively on respiratory therapy (getting her off the ventilator/respirator).
The doctor reported the following today:
-They will be putting a shunt in on Wednesday afternoon some time (this will take the place of the drain to rid her of excess fluid in the head---it is internal, can't be seen from the outside, goes from her head to her stomach where the fluid will exit naturally).
-Her infections are all gone!
-She has no more fever
-Her cultures are all negative
-Her tracheal bronchitis has improved a lot
-No more seizure activity
-White blood cell count is low (good thing)
-Bloating in stomach is improved
But the doctor also said that:
-She can either remain as she is now or improve (they don't know if she will or can improve)
-He can't tell us confidently how much recovery there will be because she has not yet become awake
-There is definitely some degree of neurological injury but he doesn't know how much--big sign is the fact that she won't wake up
-They have exhausted all avenues to try to figure out why she hasn't woken up yet (neurologically/medically)
-He has no sense of where her recovery is going yet -- could be too early to tell
-She was making small but steady progress then seemed to dip down in the progress and has plateaued for several days now.
-They are going to try a neuropsychological stimulant tomorrow to help wake her up
-Once she is in rehab, we should see improvement in 1-3 months
-He will still work to get her off the ventilator
-Once she gets to rehab, she will have a new team of doctors
I asked him if the situation was hopeless and he said no. He said we should and could still hope because there still is hope but he wanted us to know that she seems to have reached a plateau (for how long is uncertain)
The surgeon came in and said:
-Can't predict her recovery because it is too soon after the initial event of the aneurysm
-she is currently not in an independent state
-Can't say what degree of recovery can be expected
-Needs to tell us though that statistically the odds are stacked against her that she will make a full recovery
-In 3 months we will know more
-in 6 months the extent of her recovery will be definitive
Please continue to pray, pray, pray....she needs to wake up...
The Social Worker came to talk to us about moving her to a rehab center in about a week or so. Dad, Anthony, Claudia and I are looking at one tomorrow, and one on Wednesday evening. The rehab center will work aggressively on respiratory therapy (getting her off the ventilator/respirator).
The doctor reported the following today:
-They will be putting a shunt in on Wednesday afternoon some time (this will take the place of the drain to rid her of excess fluid in the head---it is internal, can't be seen from the outside, goes from her head to her stomach where the fluid will exit naturally).
-Her infections are all gone!
-She has no more fever
-Her cultures are all negative
-Her tracheal bronchitis has improved a lot
-No more seizure activity
-White blood cell count is low (good thing)
-Bloating in stomach is improved
But the doctor also said that:
-She can either remain as she is now or improve (they don't know if she will or can improve)
-He can't tell us confidently how much recovery there will be because she has not yet become awake
-There is definitely some degree of neurological injury but he doesn't know how much--big sign is the fact that she won't wake up
-They have exhausted all avenues to try to figure out why she hasn't woken up yet (neurologically/medically)
-He has no sense of where her recovery is going yet -- could be too early to tell
-She was making small but steady progress then seemed to dip down in the progress and has plateaued for several days now.
-They are going to try a neuropsychological stimulant tomorrow to help wake her up
-Once she is in rehab, we should see improvement in 1-3 months
-He will still work to get her off the ventilator
-Once she gets to rehab, she will have a new team of doctors
I asked him if the situation was hopeless and he said no. He said we should and could still hope because there still is hope but he wanted us to know that she seems to have reached a plateau (for how long is uncertain)
The surgeon came in and said:
-Can't predict her recovery because it is too soon after the initial event of the aneurysm
-she is currently not in an independent state
-Can't say what degree of recovery can be expected
-Needs to tell us though that statistically the odds are stacked against her that she will make a full recovery
-In 3 months we will know more
-in 6 months the extent of her recovery will be definitive
Please continue to pray, pray, pray....she needs to wake up...
Mom Update, June 15, 2010, Tuesday
Doctors put mom on an neuropsychological stimulant this evening at 5:00 p.m. This will, or can, help to wake her up. They said it could take 24 hours to see any sign of waking. SO PRAY!!!!!!
She is still on antibiotics (2) and an antianxiety drug as well
Mom looks so much more peaceful now that she has no fever or other issues. You can tell when she is sleeping and when she is alert (though eyes closed).
Claudia and I went early this morning to see her and she opened her eyes once alone on command, and kept them open for many seconds on another instance.
She is trying to move her mouth a lot now and her tongue as well
Made many facial expressions
Turned to face speaker
Moved arm, hand, leg, foot on right side for us
Looks like she smiles sometimes
Rehab Center Information:
-24 hour visiting for immediate family
-8-8 visiting for all others
-2 people in a room in the vent wing (unless private room is only one available--or in case of infections...)
-24 hour respiratory therapists on staff
-May be waiting list
--If waiting list, mom goes elsewhere until available bed then moved
-Most people on staff are RNs on vent unit
-Hospital transports her
-20 days paid in full by Medicare then 21-100 days there is a co-pay but Empire should cover that
-Medicaid takes over after 100 days---apply through facility around day 50
-OT, PT, Speech therapies are available and given'
Respiratory Therapist Information:
-Each day attempts made to get off vent
-Check carbon dioxide levels each day
-Seen by pulminologist weekly once a CARE PLAN is developed after arrival
-Self-sufficient facility--don't need pulminologist to wean mom off vent, they do it themselves (respiratory therapists), therapists can also check x-rays, lab work..independently
-Sleep apnea can be obstacle to getting off vent at night and trach
-Trach and sleep apnea can cause mom to most likely need trach and vent forever but she can go home with this
-Exercise muscles in lungs and rib cage to help people get off vent
-No neurologist on staff but there are other doctors like renal doctor on staff
All vents are monitored digitally 24/7 in hallways, offices, and nurses stations---high safety precautions
She is still on antibiotics (2) and an antianxiety drug as well
Mom looks so much more peaceful now that she has no fever or other issues. You can tell when she is sleeping and when she is alert (though eyes closed).
Claudia and I went early this morning to see her and she opened her eyes once alone on command, and kept them open for many seconds on another instance.
She is trying to move her mouth a lot now and her tongue as well
Made many facial expressions
Turned to face speaker
Moved arm, hand, leg, foot on right side for us
Looks like she smiles sometimes
Rehab Center Information:
-24 hour visiting for immediate family
-8-8 visiting for all others
-2 people in a room in the vent wing (unless private room is only one available--or in case of infections...)
-24 hour respiratory therapists on staff
-May be waiting list
--If waiting list, mom goes elsewhere until available bed then moved
-Most people on staff are RNs on vent unit
-Hospital transports her
-20 days paid in full by Medicare then 21-100 days there is a co-pay but Empire should cover that
-Medicaid takes over after 100 days---apply through facility around day 50
-OT, PT, Speech therapies are available and given'
Respiratory Therapist Information:
-Each day attempts made to get off vent
-Check carbon dioxide levels each day
-Seen by pulminologist weekly once a CARE PLAN is developed after arrival
-Self-sufficient facility--don't need pulminologist to wean mom off vent, they do it themselves (respiratory therapists), therapists can also check x-rays, lab work..independently
-Sleep apnea can be obstacle to getting off vent at night and trach
-Trach and sleep apnea can cause mom to most likely need trach and vent forever but she can go home with this
-Exercise muscles in lungs and rib cage to help people get off vent
-No neurologist on staff but there are other doctors like renal doctor on staff
All vents are monitored digitally 24/7 in hallways, offices, and nurses stations---high safety precautions
Mom Update, June 16, 2010, Wednesday
Anthony (my brother) and Samantha were with mom all morning and early afternoon today. She opened her eyes for Samantha and looked a lot like she was trying to talk. When we say she opened her eyes, she does so, but not more than a few seconds at best--its hard for her to do. It still seems like she is no longer communicating with her eyes...but moreso with her mouth now (though no sound comes out due to the trach).
Mom didn't get the shunt today because they had her on the neuropsychological stimulant until 5 p.m. (which is when the shunt was scheduled) and her blood pressure rose and her vital signs were not stable (all part of the reaction to the stimulant drug).
Doctor reported that she did respond to the command to open her eyes, and other things like raise your hand...
Doctor reports: (Dr. - associate of Dr. who spoke to us Monday)
-She is making slight, slow progress (PTL!!!!!!!!!!!!!!!!!!)
-There is no structural brain damage evident
-Blood is flowing well through brain and head
-No residual blood left on brain
-No major red flags as to why she won't wake up
-It could take 3, 4, 6 months to wake up so be patient (he said he has seen 85 year olds wake up after months and walk home)
-They clamped the drain which cut it off---the drain is in the top of her head and it lets out the fluids that naturally accumulate in the head. They will observe the effects of this and see how her brain naturally drains the fluid (not sure if this means no shunt at all now...tend to think they'll do it anyway.)
-Shunt will be done in the safest way possible and when mom is ready for it
-If the doctors say mom's progress is the "SAME" -- not necessarily bad...could be just healing internally... only so much can be seen through modern technology)
Claudia and Dad received this report. They saw mom today with Aunt Sophie. I didn't get to see mom today because I visited one of the rehab centers then went to work (Mon./Wed. nites 6-9 p.m.)
Claud asked doctor and stroke specialist about the rehab centers we saw and asked questions about therapies.
We are all leaning toward the facility near me---it appears to be much more specialized in handling vent patients and doing aggressive respiratory therapy---
North Shore doctors said to inquire about getting mom cognitive/neurological therapy (conducted by a neuropsychologist) in addition to respiratory therapy.
The doctor Claudia and dad spoke to today stressed how some doctors lean toward more cautious, worse case scenario reports....
Bottom line...I choose HOPE. The glass is still half full in my book, not half empty. My opinion...we don't know a lot about the brain...it's the new frontier of the 21st century...God is my mom's Healer and Great Physician.
"Faith is the substance of things hoped for...the evidence of things unseen." Hebrews 11:1
Keep praying our friends!!!! Love to you all, Kath
Mom didn't get the shunt today because they had her on the neuropsychological stimulant until 5 p.m. (which is when the shunt was scheduled) and her blood pressure rose and her vital signs were not stable (all part of the reaction to the stimulant drug).
Doctor reported that she did respond to the command to open her eyes, and other things like raise your hand...
Doctor reports: (Dr. - associate of Dr. who spoke to us Monday)
-She is making slight, slow progress (PTL!!!!!!!!!!!!!!!!!!)
-There is no structural brain damage evident
-Blood is flowing well through brain and head
-No residual blood left on brain
-No major red flags as to why she won't wake up
-It could take 3, 4, 6 months to wake up so be patient (he said he has seen 85 year olds wake up after months and walk home)
-They clamped the drain which cut it off---the drain is in the top of her head and it lets out the fluids that naturally accumulate in the head. They will observe the effects of this and see how her brain naturally drains the fluid (not sure if this means no shunt at all now...tend to think they'll do it anyway.)
-Shunt will be done in the safest way possible and when mom is ready for it
-If the doctors say mom's progress is the "SAME" -- not necessarily bad...could be just healing internally... only so much can be seen through modern technology)
Claudia and Dad received this report. They saw mom today with Aunt Sophie. I didn't get to see mom today because I visited one of the rehab centers then went to work (Mon./Wed. nites 6-9 p.m.)
Claud asked doctor and stroke specialist about the rehab centers we saw and asked questions about therapies.
We are all leaning toward the facility near me---it appears to be much more specialized in handling vent patients and doing aggressive respiratory therapy---
North Shore doctors said to inquire about getting mom cognitive/neurological therapy (conducted by a neuropsychologist) in addition to respiratory therapy.
The doctor Claudia and dad spoke to today stressed how some doctors lean toward more cautious, worse case scenario reports....
Bottom line...I choose HOPE. The glass is still half full in my book, not half empty. My opinion...we don't know a lot about the brain...it's the new frontier of the 21st century...God is my mom's Healer and Great Physician.
"Faith is the substance of things hoped for...the evidence of things unseen." Hebrews 11:1
Keep praying our friends!!!! Love to you all, Kath
Mom Update, June 17, 2010, Thursday
Mom looked great today. She is still responding to our voices and trying really, really hard to open her eyes and look at us. Still moving her tongue and mouth a lot in response to our talking to her. Moving arm, hand...on right side alot. They took the drain out of her head today and said that, according to the CATScan, she doesn't need the drain or the shunt any more!!! PTL!!!!! Her head is draining fluid naturally so far. The doctors will continue to monitor her ability to drain fluid over the next few days. No word on when she will be transferred to Medford yet. Keep praying---it's working!! xxxooo
Mom Update, June 18, 2010, Friday
Someone asked if Mom's eyes respond to light...they do. Mom was the same today --- appearing to try to talk to us, making new faces, has been, over the last 2 days, shaking her head up and down like, "yes," today shook her head side to side like, "no." The doctors took her restraints off her wrists so she can fully move her arms again.
But the best news is that, when dad was saying, "Good bye" tonight...he was holding mom's hand and she was not only squeezing it, but she took his hand in hers and lifted it to stroke her face...
She's in there somewhere...continue to pray please...and thank you so much.
I am the LORD; those who hope in me will not be disappointed."Isaiah 49:22-24
PS...found out some information today about the HPPA laws---Privacy Act Law---double check with your insurance carrier (not your doctor...) to be sure that you signed permission for someone to have access to your health insurance policy information...mom and dad thought they had done this, but hadn't...what a mess it was to sort through (only by the Grace of God!!)....check it out Monday and sign the forms to let a loved one have access to your health insurance benefit information...
But the best news is that, when dad was saying, "Good bye" tonight...he was holding mom's hand and she was not only squeezing it, but she took his hand in hers and lifted it to stroke her face...
She's in there somewhere...continue to pray please...and thank you so much.
I am the LORD; those who hope in me will not be disappointed."Isaiah 49:22-24
PS...found out some information today about the HPPA laws---Privacy Act Law---double check with your insurance carrier (not your doctor...) to be sure that you signed permission for someone to have access to your health insurance policy information...mom and dad thought they had done this, but hadn't...what a mess it was to sort through (only by the Grace of God!!)....check it out Monday and sign the forms to let a loved one have access to your health insurance benefit information...
Mom Update, June 19, 2010, Saturday
Not much to tell today. Mom was basically the same and had a quieter, sleepier day Saturday. She tried to open her eyes by lifting her eyebrows way up...but didn't quite open them. She moved her right arm alot. When I arrived and greeted her, her arm lifted and her head turned toward me. Dad is still, naturally, really upset...kind words to him would be wonderful, if you get the chance (Wordstodad@aol.com). No word on when they plan to move her to the Rehab Center yet. Also, Mom can hear us when we visit, so we are trying to be positive about her and her recovery/progress in her room and presence as the doctors and nurses have advised. If you visit, please keep this in mind and don't speak about anything negative in her presence---any medical questions should be held until outside her room... Do feel free to come visit her--I think it helps her to hear familiar voices. Thanks so much to all for everything. In the meantime, pray, pray, pray.
"...The effective, fervent prayer of a righteous man avails much" (James 5:16),
"...The effective, fervent prayer of a righteous man avails much" (James 5:16),
Mom Update, June 20, 2010, Sunday
Good reports today! Nurse reported that mom opened her eyes 3 times for her in last 24 hours and 2 times for the doctors on command! Dad said she was much more responsive today--moving her head side to side and up and down, moving right arm and hand a lot and her mouth and tongue as well...all progress. Doctors said her trach needed to be adjusted somehow because wasn't draining properly...so that was fixed yesterday and its all looking good today. No news on when she is being moved. If anyone plans to visit, please be sure to be in good health and remember to speak only positive words to her and in her room--she can hear everything that is said. Keep praying....love to all, Kath
Hebrews 11:1 Now faith is the substance of things hoped for, the evidence of things not seen.
Hebrews 11:1 Now faith is the substance of things hoped for, the evidence of things not seen.
Mom Update, June 21, 2010, Monday
Mom is being moved to the 5th floor Respiratory Care Unit. Her doctor (neurosurgeon) has reported that he has done all he can for her medically and that she is ready to move out of the NSCU. The doctor said that, one week ago, he could not give us a positive prognosis, but today, he feels differently. He said that mom has made "tremendous progress" over the last week. She was originally on the vent at a #12 (which was not good since the worst side leans toward a 10) but she is now at a #5!!!! She is without the vent 4-5 hours per day and breathing on her own.She is responding to commands on the right side of her body and moving well, but is still sluggish on the left side though she is able to respond to pain and move it. Each day, the doctor reports, mom has made steady progress. At this point, he feels that her age and blood pressure (high) problems are causing a delayed awakening but that this is typical and normal. She continues to open her eyes for the doctor as well.
The neurosurgeon said, "One week ago, I couldn't say this, but--I know she is in there now! She just needs to wake up"
Dr. --- is her respiratory care doctor now. We don't know how long she will be in the new unit at the hospital. The doctor is going to try to get her off the trach and vent. The Social Worker in Respiratory Care is ---- and is assisting the doctor in her care. Visiting hours are the same in this unit as before.
The nurse faxed all paperwork to the Rehab Center today so she is set to be moved there whenever she is ready to be moved (which seems like sometime this week).
KEEP PRAYING!!!! THANKS TO ALL!!! MUCH LOVE KATH
"…The effective, fervent prayer of a righteous man avails much."
James 5:16
The neurosurgeon said, "One week ago, I couldn't say this, but--I know she is in there now! She just needs to wake up"
Dr. --- is her respiratory care doctor now. We don't know how long she will be in the new unit at the hospital. The doctor is going to try to get her off the trach and vent. The Social Worker in Respiratory Care is ---- and is assisting the doctor in her care. Visiting hours are the same in this unit as before.
The nurse faxed all paperwork to the Rehab Center today so she is set to be moved there whenever she is ready to be moved (which seems like sometime this week).
KEEP PRAYING!!!! THANKS TO ALL!!! MUCH LOVE KATH
"…The effective, fervent prayer of a righteous man avails much."
James 5:16
Mom Update, June 22, 2010, Tuesday
Dad and I arrived early at North Shore this morning to find out that mom was planned to be transported, not to floor 5 on the respiratory care unit, but out to the Rehab Center (a bed was open so everyone at both places felt it best to move her). During our 2 hour stay at the hospital this morning, mom moved her right arm and shoulder and opened her eyes a crack 2 or 3 times. Dad and I packed up her room, cleaned her hearing aids (but then decided to bring them to be serviced) and met her later in the afternoon at the Center. She arrived there at the Center at about 4:00 and dad and I saw her at 4:45. By the time we left at 8:00 p.m., she was settled in at her new place. She looked unusually peaceful at the Center and responded to us in new ways numerous times---moved her right leg and foot and toes, right arm and hand and shoulder, and really tried to open her eyes widely for us 3 times in a row (opened a crack only) and persisted in this attempt for a good 3 minutes or so. She repeatedly tried to open her eyes and also looked like she was trying to talk to us. At one point, she opened her eyes slightly and I gave her an "assist" and she looked right at me then, when I told her to "look at dad," she turned and looked at him--but then seemed to cry or look upset briefly when she saw him.
Keep praying and thanks for all the prayers....
This is the day that the LORD has made; Let us rejoice and be glad in it. Psalm 118:24
Keep praying and thanks for all the prayers....
This is the day that the LORD has made; Let us rejoice and be glad in it. Psalm 118:24
Mom Update, June 23, 2010, Wednesday
Couldn't write the update last night...loooooonnnngg day at the Rehab Facility yesterday. I was wiped out by the time I finished teaching at 9:00 p.m. and came home.
I guess you could encapsulate yesterday by saying that, "Transitions are difficult for us all."
Claudia, Anthony and my dad and I all spoke to the Nursing Supervisor yesterday, who informed us that, when the Rehab Team (Occupational Therapist, Physical Therapist, Speech, Respiratory Therapist, doctor) all assessed mom yesterday morning, she was unresponsive. Hence, the Physical Therapist and Occupational Therapist are not going to proceed with therapy at this time and will reassess mom in 1 month to see if she is more alert then. Needless to say, Claudia and I will be meeting with these 2 therapists in the near future to discuss mom and begin therapies. Their plan of actions were not acceptable. They chose to assess her the morning after her move from North Shore---this was draining for her!!!! We know this from watching her over the last 3 weeks. She was having a sleepy day yesterday.
The Supervisory Nurse was bleak. Gloom and doom. No corneal reflex, no response to commands, no arousing her or ability to become alert. While we know that she doesn't know mom or the progress she has made over the last 3 weeks (though we fill in everyone we meet), it is hard to hear a bleak report...especially for dad. When Gay left the room briefly, at one point, I saw dad's sad demeanor and said, "Hey dad, we aren't accepting that report. We choose hope. We still have it. Nothing has changed except that this woman's words and assessments are added in the mix of things. We choose God's report and the reports of the doctors at North Shore, as recently as Monday, the people who know her better at this point and have watched her progress. We choose hope." But dad's sunken face and demeanor was hard to be in the presence of. Please pray for him and reach out if you can with a phone call or card. I, too, know what it is like to lose a spouse...though my situation is different...in ways it really isn't. It hurts to be suddenly alone...and I can't imagine what it is like to lose someone you are in love with who is in love with you too.
BUT...enough gloom and doom. We don't buy it. The supervisory nurse and OT/PT people and doctor there don't know feisty, lively mom yet. They will.
We had much better conversations (Claudia and I) with the Respiratory Therapist and Speech Therapist and Social Worker, who all took the time to listen to mom's story and progress and Claudia and my reports of mom and what we have taken note of. Claudia and I have a plan....and you can be part of it (but the prayer is the main thing!!! so keep that going!!)
Claudia and I have noted that mom has 3 states that she vascillates in and out of according to either how she feels or what has gone on in the way of procedures or transports to places. (Aside: Mom has been through a lot in the last 3 weeks, what with procedures, infections, transporting her...). But back to her 3 states:
1. The "out of it all" state...in this state, mom looks totally unresponsive. No matter what you do, it is hard to arouse her and stimulate her to do anything. This state usually follows an infection, fever, movement/transportation, procedure (drain removed, coil...).
2. The "sleepy" state...in this state, mom looks different...much like a person sleeping. (you can visually see the difference between the states even though she has her eyes closed in all 3). In the sleepy state, mom can be aroused and stimulated to become more alert. We can get her to try to open her eyes, she begins to move around... Sometimes, when she is tired, she drifts in and out of this sleepy state before becoming alert.
3. The "alert" state...in this state, mom has her eyes closed too, but you can see her eyeballs flickering under her eyelids, she turns toward a voice, tries to open her eyes, can sometimes follow a command...
The Respiratory Therapist and Speech Therapist were both intrigued and interested in this information. The Speech Therapist is coming back again and again to assess mom and agreed with us that we should do "Infant Stimulation" type of therapies with her. She is going to share some coma stimulation therapy with us as well. The Respiratory Therapist agreed with being hopeful and told us one of his many success stories about a man of 85 who was in a deep coma and on a trach and vent who woke up and went home fine without any trach or vent. His plan is to wean mom off the vent, or try to do that, at least 4 times a day (2 times every 12 hour period). They monitor carbon dioxide levels not blood gases to do this. He reported that mom's initial attempts yesterday were not successful. We have wonderful working relationships with these 2 therapists.
Claudia and I plan to chart mom's states---out of it, sleepy, alert and will be developing charts to do this. You can fill out the charts when you visit. We are also researching therapies and will be leaving a book of activities you can do with mom when you visit, if you choose to do so. More on this will follow as Claudia and I develop the program. The Speech Therapist (who will be doing cognitive therapy) thought this was a great idea.
Have to run...but will report an update of today later tonight.
In the meantime, CONTINUE TO PRAY!! Love you all so much...Kathy
"And now, Lord, for what do I wait? My hope is in you!" Psalm 39:7
I guess you could encapsulate yesterday by saying that, "Transitions are difficult for us all."
Claudia, Anthony and my dad and I all spoke to the Nursing Supervisor yesterday, who informed us that, when the Rehab Team (Occupational Therapist, Physical Therapist, Speech, Respiratory Therapist, doctor) all assessed mom yesterday morning, she was unresponsive. Hence, the Physical Therapist and Occupational Therapist are not going to proceed with therapy at this time and will reassess mom in 1 month to see if she is more alert then. Needless to say, Claudia and I will be meeting with these 2 therapists in the near future to discuss mom and begin therapies. Their plan of actions were not acceptable. They chose to assess her the morning after her move from North Shore---this was draining for her!!!! We know this from watching her over the last 3 weeks. She was having a sleepy day yesterday.
The Supervisory Nurse was bleak. Gloom and doom. No corneal reflex, no response to commands, no arousing her or ability to become alert. While we know that she doesn't know mom or the progress she has made over the last 3 weeks (though we fill in everyone we meet), it is hard to hear a bleak report...especially for dad. When Gay left the room briefly, at one point, I saw dad's sad demeanor and said, "Hey dad, we aren't accepting that report. We choose hope. We still have it. Nothing has changed except that this woman's words and assessments are added in the mix of things. We choose God's report and the reports of the doctors at North Shore, as recently as Monday, the people who know her better at this point and have watched her progress. We choose hope." But dad's sunken face and demeanor was hard to be in the presence of. Please pray for him and reach out if you can with a phone call or card. I, too, know what it is like to lose a spouse...though my situation is different...in ways it really isn't. It hurts to be suddenly alone...and I can't imagine what it is like to lose someone you are in love with who is in love with you too.
BUT...enough gloom and doom. We don't buy it. The supervisory nurse and OT/PT people and doctor there don't know feisty, lively mom yet. They will.
We had much better conversations (Claudia and I) with the Respiratory Therapist and Speech Therapist and Social Worker, who all took the time to listen to mom's story and progress and Claudia and my reports of mom and what we have taken note of. Claudia and I have a plan....and you can be part of it (but the prayer is the main thing!!! so keep that going!!)
Claudia and I have noted that mom has 3 states that she vascillates in and out of according to either how she feels or what has gone on in the way of procedures or transports to places. (Aside: Mom has been through a lot in the last 3 weeks, what with procedures, infections, transporting her...). But back to her 3 states:
1. The "out of it all" state...in this state, mom looks totally unresponsive. No matter what you do, it is hard to arouse her and stimulate her to do anything. This state usually follows an infection, fever, movement/transportation, procedure (drain removed, coil...).
2. The "sleepy" state...in this state, mom looks different...much like a person sleeping. (you can visually see the difference between the states even though she has her eyes closed in all 3). In the sleepy state, mom can be aroused and stimulated to become more alert. We can get her to try to open her eyes, she begins to move around... Sometimes, when she is tired, she drifts in and out of this sleepy state before becoming alert.
3. The "alert" state...in this state, mom has her eyes closed too, but you can see her eyeballs flickering under her eyelids, she turns toward a voice, tries to open her eyes, can sometimes follow a command...
The Respiratory Therapist and Speech Therapist were both intrigued and interested in this information. The Speech Therapist is coming back again and again to assess mom and agreed with us that we should do "Infant Stimulation" type of therapies with her. She is going to share some coma stimulation therapy with us as well. The Respiratory Therapist agreed with being hopeful and told us one of his many success stories about a man of 85 who was in a deep coma and on a trach and vent who woke up and went home fine without any trach or vent. His plan is to wean mom off the vent, or try to do that, at least 4 times a day (2 times every 12 hour period). They monitor carbon dioxide levels not blood gases to do this. He reported that mom's initial attempts yesterday were not successful. We have wonderful working relationships with these 2 therapists.
Claudia and I plan to chart mom's states---out of it, sleepy, alert and will be developing charts to do this. You can fill out the charts when you visit. We are also researching therapies and will be leaving a book of activities you can do with mom when you visit, if you choose to do so. More on this will follow as Claudia and I develop the program. The Speech Therapist (who will be doing cognitive therapy) thought this was a great idea.
Have to run...but will report an update of today later tonight.
In the meantime, CONTINUE TO PRAY!! Love you all so much...Kathy
"And now, Lord, for what do I wait? My hope is in you!" Psalm 39:7
Mom Update, June 24, 2010, Thursday
Dad and I arrived today at noon. We brought mom's hearing aids and put them in.
The Dietician Reported: she is providing mom with a diet high in amino acids to aide in the healing process (like the bruise spot on the base of her spine). Mom is also getting extra Vitamin C and iron in her diet as well. The dietician may decrease the amount of food mom is getting in order to help the stomach distention.
"Nurse Ratchet" reported:
-Mom received the air mattress for her spinal bruise today
-Though the wound at the lower spine is not open now...she insists that it will open eventually (pray against this!!) and become ulcerated.
-They are also keeping mom's legs elevated somewhat to prevent a rash on her bottom from the diarrhea from the bowel infection
Mom's Day Nurse, reported: There are traces (extremely small ones) of pneumonia in her left lung but it appears that it is residue left from the trach infection at North Shore. A chest x-ray showed this. The doctor is also examining the phlegm for pneumonia (the results will be back Sunday or Monday). But she assured us not to worry about this. Mom is being given CIPRO in the meantime.
Mom had 2 of the BEST CNAs today!! Jamaican and soooo wonderful!! The best one is Matia--say an extra blessing prayer for her!!
NOW FOR THE BEST STUFF ABOUT TODAY!!!!MOM OPENED HER EYES 5 SEPARATE TIMES!!!! ALL THE WAY OPEN!!!! WIDE EYED!!!
The first time this happened was when one of the CNAs was trying to sit mom up straight in the bed (something that we've watched done many times before). But as she moved mom, mom made an annoyed face and opened her eyes wide open!!!! And kept them open for a good 2 minutes while the nurse adjusted her. She briefly closed them and opened them again 2 more times. Then, she closed them again. Dad started yelling excitedly: "OH MY GOD!! SHE'S OPENING HER EYES!!!" We both started to cry!!
Mom then proceeded to prove the team from yesterday all wrong by having a really alert, active day with dad and I. She moved her head, leg, foot, hand... She made new faces. She tried to open her eyes but couldn't (just did the eyebrow lift thing she does). She also tried to lift her right arm higher and higher repetitively until she actually touched her nose with her hand a few times!! At 2:55, a respiratory nurse came in to suction her and change the filter in the vent---at the 3rd suctioning, mom made that annoyed face again and fully OPENED her eyes 2 more times!! WIDELY!!! and for several seconds.
Mom also did a lot of yawning today which is new...Big, huge yawns...15 total between 12-3:30.
She was moved to a reclining type of chair out of bed today as well.
She responded in an alert way (tracking, making faces, flaring nostrils...) to the vanilla and frankincense again too.
I told the Speech Pathologist, all this and she was happy to hear it all. She also told me that when she worked with mom today she noticed that Claudia and I were right, "You guys were right. I noticed that if the room is quiet and nothing is going on, she is still and not alert. But as soon as I began to 'mess with her' like you guys said to, she become more responsive." God bless Shelby.
Mom became sleepy by 3:30 so dad and I left.
When we returned at 6:50, mom was still sleepy...could be aroused but not like in the afternoon. She did all the above things (not open her eyes though) but much more infrequently and slowly. She seemed tired. Like a DULL ALERT type of state. She yawned a few times too.
Mark 10:2727 But Jesus looked at them and said, “With men it is impossible, but not with God; for with God all things are possible.” (This is the sign I hung in her room today!!)...Love to all deeply--keep praying friends. Kathy
The Dietician Reported: she is providing mom with a diet high in amino acids to aide in the healing process (like the bruise spot on the base of her spine). Mom is also getting extra Vitamin C and iron in her diet as well. The dietician may decrease the amount of food mom is getting in order to help the stomach distention.
"Nurse Ratchet" reported:
-Mom received the air mattress for her spinal bruise today
-Though the wound at the lower spine is not open now...she insists that it will open eventually (pray against this!!) and become ulcerated.
-They are also keeping mom's legs elevated somewhat to prevent a rash on her bottom from the diarrhea from the bowel infection
Mom's Day Nurse, reported: There are traces (extremely small ones) of pneumonia in her left lung but it appears that it is residue left from the trach infection at North Shore. A chest x-ray showed this. The doctor is also examining the phlegm for pneumonia (the results will be back Sunday or Monday). But she assured us not to worry about this. Mom is being given CIPRO in the meantime.
Mom had 2 of the BEST CNAs today!! Jamaican and soooo wonderful!! The best one is Matia--say an extra blessing prayer for her!!
NOW FOR THE BEST STUFF ABOUT TODAY!!!!MOM OPENED HER EYES 5 SEPARATE TIMES!!!! ALL THE WAY OPEN!!!! WIDE EYED!!!
The first time this happened was when one of the CNAs was trying to sit mom up straight in the bed (something that we've watched done many times before). But as she moved mom, mom made an annoyed face and opened her eyes wide open!!!! And kept them open for a good 2 minutes while the nurse adjusted her. She briefly closed them and opened them again 2 more times. Then, she closed them again. Dad started yelling excitedly: "OH MY GOD!! SHE'S OPENING HER EYES!!!" We both started to cry!!
Mom then proceeded to prove the team from yesterday all wrong by having a really alert, active day with dad and I. She moved her head, leg, foot, hand... She made new faces. She tried to open her eyes but couldn't (just did the eyebrow lift thing she does). She also tried to lift her right arm higher and higher repetitively until she actually touched her nose with her hand a few times!! At 2:55, a respiratory nurse came in to suction her and change the filter in the vent---at the 3rd suctioning, mom made that annoyed face again and fully OPENED her eyes 2 more times!! WIDELY!!! and for several seconds.
Mom also did a lot of yawning today which is new...Big, huge yawns...15 total between 12-3:30.
She was moved to a reclining type of chair out of bed today as well.
She responded in an alert way (tracking, making faces, flaring nostrils...) to the vanilla and frankincense again too.
I told the Speech Pathologist, all this and she was happy to hear it all. She also told me that when she worked with mom today she noticed that Claudia and I were right, "You guys were right. I noticed that if the room is quiet and nothing is going on, she is still and not alert. But as soon as I began to 'mess with her' like you guys said to, she become more responsive." God bless Shelby.
Mom became sleepy by 3:30 so dad and I left.
When we returned at 6:50, mom was still sleepy...could be aroused but not like in the afternoon. She did all the above things (not open her eyes though) but much more infrequently and slowly. She seemed tired. Like a DULL ALERT type of state. She yawned a few times too.
Mark 10:2727 But Jesus looked at them and said, “With men it is impossible, but not with God; for with God all things are possible.” (This is the sign I hung in her room today!!)...Love to all deeply--keep praying friends. Kathy
Addendum to Mom Update, June 25, 2010, Friday
We play music for mom alot...we started doing this in North Shore in the hospital. We also talk to her, read to her, sing to her, rub her, tickle and/or scratch sole of foot and palm of hand, and we put frankincense or vanilla on a q-tip or cloth for her to smell (even though she supposedly can't smell on the vent---she flares her nostrils and/or makes faces and/or tracks the smells in her alert state).
Mom Update, June 25, 2010, Friday
Mom opened her eyes 3 times today...!!!!!!!!!! The first time she did this was around midday when Claudia was sitting next to her snuggling and talking to her. Claudia said that, all of a sudden, mom opened her eyes widely and kept them that way--so Claudia moved her head in front of mom's eyes and said, "Hi Mom, it's me, Claudia" and mom looked at her and then a tear slid down her cheek.
The second time Mom opened her eyes was with Aunt Carol. Mom and Aunt Carol were alone in the room and Aunt Carol was talking to her when suddenly, Mom coughed and then opened her eyes widely. I don't remember if she recognized Aunt Carol or not; but she kept them open for a while (a minute or so...maybe less). This happened around 3:50 p.m.
The 3rd time Mom opened her eyes was with Anthony (my brother). He was stroking her hair and face and talking to her when she suddenly tried to open her eyes and did so a little crack...then Anthony opened her right eye all the way for her, then Mom opened the left eye widely and then Anthony let go and she kept both eyes opened for a while (definitely at least a minute). Anthony talked to her, and then mom cried (a tear slid down her cheek). This happened around 8:00 p.m.
Mom was and had been pretty non-active from 6-9 p.m. comparatively,. but still opened her eyes during this time.
When I visited mom at 8:00 a.m. this morning, I told her I was leaving the room for a minute and when I came back, I told her I was back and said, "I'm back! It's me! Kathy..." while scratching the palm of her hand and rubbing her leg. She turned to my voice and smiled a huge grin at me! I said, "Oh are you happy to see me?" and then she made a bigger grin (her eyes were closed though).
TO GOD BE THE GLORY!!!!
We met the Recreation Therapist, Andrea, who is amazing like Shelby the Speech Therapist!! Andrea can't wait to work with mom. She is going to sing to her, read to her, turn on music or the TV to her favorite channels, do sensory stimulation...
We also met the Occupational Therapist, who reported that mom was totally unresponsive on Wednesday. I spoke to her at length about mom...she said to track her progress and that if mom demonstrated more "alert" times, she'd come do therapy with her.
We also met the physical therapist, he was very nice and is planning an in-service training for us at our request to learn what to do to work with mom---we will work with her but he can't until she can follow a command. But he was very receptive to learning about mom and hearing about her progress. A wonderful person.
Mom also moved her head side to side, up and down, moved her arm and foot and leg and hand (right side). Made MANY usual faces. She responded to the Frankincense today but not much to the vanilla. She continues to yawn alot. Dennis, the respiratory therapist, said that the yawning could be physiological or neurological---she may be getting the urge to yawn and does so or it could be a response to wanting more air. But with the vent, she supposedly can't breath in any air (or a limited amount?)...He said the yawning was "insignificant"...I think not---it's a new movement.
Dad and I went to speak to a Medicaid Advocate today to get some help with the Medicaid process as well....it was very informative. Then I took dad back to see mom before and after dinner with Aunt Carol.
A wonderfully long day...tired. Thanks for all the prayers and support...we all can't thank you all enough.
Love
Kath
And He said to them, "Come away by yourselves to a secluded place and rest a while. ...Mark 6:31
The second time Mom opened her eyes was with Aunt Carol. Mom and Aunt Carol were alone in the room and Aunt Carol was talking to her when suddenly, Mom coughed and then opened her eyes widely. I don't remember if she recognized Aunt Carol or not; but she kept them open for a while (a minute or so...maybe less). This happened around 3:50 p.m.
The 3rd time Mom opened her eyes was with Anthony (my brother). He was stroking her hair and face and talking to her when she suddenly tried to open her eyes and did so a little crack...then Anthony opened her right eye all the way for her, then Mom opened the left eye widely and then Anthony let go and she kept both eyes opened for a while (definitely at least a minute). Anthony talked to her, and then mom cried (a tear slid down her cheek). This happened around 8:00 p.m.
Mom was and had been pretty non-active from 6-9 p.m. comparatively,. but still opened her eyes during this time.
When I visited mom at 8:00 a.m. this morning, I told her I was leaving the room for a minute and when I came back, I told her I was back and said, "I'm back! It's me! Kathy..." while scratching the palm of her hand and rubbing her leg. She turned to my voice and smiled a huge grin at me! I said, "Oh are you happy to see me?" and then she made a bigger grin (her eyes were closed though).
TO GOD BE THE GLORY!!!!
We met the Recreation Therapist, Andrea, who is amazing like Shelby the Speech Therapist!! Andrea can't wait to work with mom. She is going to sing to her, read to her, turn on music or the TV to her favorite channels, do sensory stimulation...
We also met the Occupational Therapist, who reported that mom was totally unresponsive on Wednesday. I spoke to her at length about mom...she said to track her progress and that if mom demonstrated more "alert" times, she'd come do therapy with her.
We also met the physical therapist, he was very nice and is planning an in-service training for us at our request to learn what to do to work with mom---we will work with her but he can't until she can follow a command. But he was very receptive to learning about mom and hearing about her progress. A wonderful person.
Mom also moved her head side to side, up and down, moved her arm and foot and leg and hand (right side). Made MANY usual faces. She responded to the Frankincense today but not much to the vanilla. She continues to yawn alot. Dennis, the respiratory therapist, said that the yawning could be physiological or neurological---she may be getting the urge to yawn and does so or it could be a response to wanting more air. But with the vent, she supposedly can't breath in any air (or a limited amount?)...He said the yawning was "insignificant"...I think not---it's a new movement.
Dad and I went to speak to a Medicaid Advocate today to get some help with the Medicaid process as well....it was very informative. Then I took dad back to see mom before and after dinner with Aunt Carol.
A wonderfully long day...tired. Thanks for all the prayers and support...we all can't thank you all enough.
Love
Kath
And He said to them, "Come away by yourselves to a secluded place and rest a while. ...Mark 6:31
Mom Update, June 26, 2010, Saturday
Claudia and Jean were with mom all day and I came by after my Hofstra presentation later in the early evening. Claudia and Jean said that mom was very alert all afternoon and had her eyes open ALOT!!! Wide open alot!! When Jean arrived today, he said, "Hi Nonny! It's me, Jean!" and she opened her eyes and smiled. Jean sang to her all afternoon---that's always a treat--and Nonny smiled and kept her eyes open alot. Claudia read to her and then she and Jean did her range of motion exercises with her arms, legs, hands and feet (moving her limbs...for her in a variety of positions so they don't stiffen up). I did aromatherapy with her-- her preference was the Frankincense again and I read to her and stroked her face... By the time I arrived, mom was tired visibly, but she still opened her eyes widely 2 xs in the 2 hours I was there and also kept them open half-way and a crack in between the wide openings. She had her eyes open most of the time I was there too. Sometimes when her eyes are open, mom appears not to see or focus on anything, while at other times, it is apparent that she is focusing and seeing things. Sometimes her eyes track and sometimes they don't. Sometimes they react to light and sometimes not.
It is my observation that, sometimes, mom recognizes us and smiles or cries when she opens her eyes, but other times, it is as though she can't focus her eyes well perhaps but hears better instead. It reminds me of what we call in special education, a sensory integration situation. Sensory integration means that someone may have difficulty integrating/combining all the senses at once and using them all at once. It seems that sometimes mom can use all her senses at once, but other times, it seems like she can only use one sense at a time. In any case, she is progressing forward in my eyes. As I told Con tonight, women have a 6-8 week recovery after a C-section---mom had brain trauma and it isn't even 4 weeks yet...so I think she is progressing well.
We asked why her left arm is swollen and why she had pain in her legs when we rubbed them yesterday and today. The nurse said it is likely due to her favoring motion in the right side over the left and that the pain in her legs could be due to arthritis. But the doctor decided to do a doplar sonogram on them to be sure.
Thank you soooo very much to all who have reached out to my dad with calls and letters and cards...he has been very touched by all the love and support.
It is so good to see mom open her eyes again....I pray that she recovers. I miss her so much. Keep up the prayers---they are working for us all.
"Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." (Php. 4:6-7)
This is my prayer for us all. Be Blessed this day dear friends and family.
It is my observation that, sometimes, mom recognizes us and smiles or cries when she opens her eyes, but other times, it is as though she can't focus her eyes well perhaps but hears better instead. It reminds me of what we call in special education, a sensory integration situation. Sensory integration means that someone may have difficulty integrating/combining all the senses at once and using them all at once. It seems that sometimes mom can use all her senses at once, but other times, it seems like she can only use one sense at a time. In any case, she is progressing forward in my eyes. As I told Con tonight, women have a 6-8 week recovery after a C-section---mom had brain trauma and it isn't even 4 weeks yet...so I think she is progressing well.
We asked why her left arm is swollen and why she had pain in her legs when we rubbed them yesterday and today. The nurse said it is likely due to her favoring motion in the right side over the left and that the pain in her legs could be due to arthritis. But the doctor decided to do a doplar sonogram on them to be sure.
Thank you soooo very much to all who have reached out to my dad with calls and letters and cards...he has been very touched by all the love and support.
It is so good to see mom open her eyes again....I pray that she recovers. I miss her so much. Keep up the prayers---they are working for us all.
"Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." (Php. 4:6-7)
This is my prayer for us all. Be Blessed this day dear friends and family.
Mom Update, June 27, 2010, Sunday
I saw mom very early in the morning Sunday and she was obviously sleeping while I was there. Anthony, Con, Dad, Terry, Anthony Michael and Samantha spent the day with her. Uncle Ray (mom's brother) and Aunt Irene (her sister-in-law) spent part of the day and early evening with her as well. I came back to see mom again with Lenny and Aunt Carol later in the day. Much of what I will report about today comes from all her visitors and not so much me.
It sounded like a good day!
Reports were that:
-Her eyes were OPEN a lot today
-Mom moved her right side -- leg, arm, foot, hand...BUT she also moved her LEFT LEG!!!! (we rarely see her do this)
-When dad and Anthony spoke to her, she turned her head to look in their direction
-When Uncle Ray sang to mom, she faced him and cried (tear down cheek)
-She managed to get her right hand all the way up to her cheek and nose
-NEW -- it looked, several times, like she was sneezing (noiseless though due to trach)
While I was there:
-Mom's eyes were open halfway a lot or open just a sliver
-She looked at Lenny when he said hello
-She moved her right side body well
-Seemed to see us 2 xs in the 2 hours we were there
-NEW -- She blinked when I flicked a finger at her eye (sounds mean, but the doctors check for this reflex when they examine her---it's a biggy!!!)
Don't remember if I wrote or not about this, but mom no longer needs the splints she had at North Shore on the left side of her body because she is no longer stiff on that side. This is good news.
Also, the swelling (edema) on the left side has gone down considerably --- her nurse said she'd be given a diuretic for it.
PRAY today for:
1. The doplar scan on left arm and leg to reveal nothing other than water from lack of use
2. THAT SHE DOES WELL WITH HER RESPIRATORY THERAPY today!! Today begins the therapy to get her gradually off the vent!!! (May God blow the breath of the Holy Spirit in her to breath well on her own!!!)
3. Of course, that she progresses and progresses....
COMA STIMULATION PLAN!!!
Claudia and I have developed Coma Stimulation Activities to do with mom when anyone visits, as well as alertness and action charts to track mom's progress. Feel free to engage in any of the activities on the sheet with her and to track what you did and how she was while you were there with her. This information is important for the doctors to have. Working with mom in a constructive way will help to get her on the road to recovery---remember, the Occupational and Physical Therapists won't work with her yet because they feel she isn't alert enough to do so....so we, her loved ones, need to fill the gap for her. Claudia and I will be tracking progress and updating the activities schedule periodically. (Still gathering some materials we need today).
Anyone who'd like to visit mom is welcome to do so any time. I sent the e-mail with directions and visiting hours last week some time. BE POSITIVE and SPEAK ONLY POSITIVE WORDS IN HER PRESENCE because she CAN hear you. Please don't talk about how bad her hair looks, or that it was shaven at the top of her head....also don't talk about how she is doing in front of her either--only that she is doing GREAT!
Thanks always for your love and support and prayers. Love Kath
"The God of love and peace will be with you this day..." 2 Corinthians 13:11
It sounded like a good day!
Reports were that:
-Her eyes were OPEN a lot today
-Mom moved her right side -- leg, arm, foot, hand...BUT she also moved her LEFT LEG!!!! (we rarely see her do this)
-When dad and Anthony spoke to her, she turned her head to look in their direction
-When Uncle Ray sang to mom, she faced him and cried (tear down cheek)
-She managed to get her right hand all the way up to her cheek and nose
-NEW -- it looked, several times, like she was sneezing (noiseless though due to trach)
While I was there:
-Mom's eyes were open halfway a lot or open just a sliver
-She looked at Lenny when he said hello
-She moved her right side body well
-Seemed to see us 2 xs in the 2 hours we were there
-NEW -- She blinked when I flicked a finger at her eye (sounds mean, but the doctors check for this reflex when they examine her---it's a biggy!!!)
Don't remember if I wrote or not about this, but mom no longer needs the splints she had at North Shore on the left side of her body because she is no longer stiff on that side. This is good news.
Also, the swelling (edema) on the left side has gone down considerably --- her nurse said she'd be given a diuretic for it.
PRAY today for:
1. The doplar scan on left arm and leg to reveal nothing other than water from lack of use
2. THAT SHE DOES WELL WITH HER RESPIRATORY THERAPY today!! Today begins the therapy to get her gradually off the vent!!! (May God blow the breath of the Holy Spirit in her to breath well on her own!!!)
3. Of course, that she progresses and progresses....
COMA STIMULATION PLAN!!!
Claudia and I have developed Coma Stimulation Activities to do with mom when anyone visits, as well as alertness and action charts to track mom's progress. Feel free to engage in any of the activities on the sheet with her and to track what you did and how she was while you were there with her. This information is important for the doctors to have. Working with mom in a constructive way will help to get her on the road to recovery---remember, the Occupational and Physical Therapists won't work with her yet because they feel she isn't alert enough to do so....so we, her loved ones, need to fill the gap for her. Claudia and I will be tracking progress and updating the activities schedule periodically. (Still gathering some materials we need today).
Anyone who'd like to visit mom is welcome to do so any time. I sent the e-mail with directions and visiting hours last week some time. BE POSITIVE and SPEAK ONLY POSITIVE WORDS IN HER PRESENCE because she CAN hear you. Please don't talk about how bad her hair looks, or that it was shaven at the top of her head....also don't talk about how she is doing in front of her either--only that she is doing GREAT!
Thanks always for your love and support and prayers. Love Kath
"The God of love and peace will be with you this day..." 2 Corinthians 13:11
Mom Update, June 28, 2010, Monday
Mom had a peaceful but sleepy day today...nothing significant going on...moved her arm and foot a few times on the right side. Made a face or two...eyes opened once when nurse suctioned her...tried to open them by lifting her brows but not quite open.
I met with the physical therapist early this morning. He showed me what to do with mom in the way of mild range of motion exercises. I will be making a chart of this for anyone to do, if you wish to, when visiting mom. We have clipboards in the draw or the armoire with charts and pencils...and activities to do with mom. Claudia purchased Sound Bingo today---to be used as a sound source while labeling the sounds. I still have to get to the stores to buy items for her Sensory Stimulation Box.
Dad and I have lots to do on Wednesday in the way of preparing for Medicaid..so Wednesday is a good day to visit mom. I will catch up with the Respiratory Therapist on Tuesday.
Her CNA said that mom had such an active weekend that she probably is just really tired today.
I know she needs to be still and heal...but I still don't like her less active days like this one.
Am exhausted tonight...Love to all...Kath
"Be still, and know that I am God" (Psalm 46:10)
I met with the physical therapist early this morning. He showed me what to do with mom in the way of mild range of motion exercises. I will be making a chart of this for anyone to do, if you wish to, when visiting mom. We have clipboards in the draw or the armoire with charts and pencils...and activities to do with mom. Claudia purchased Sound Bingo today---to be used as a sound source while labeling the sounds. I still have to get to the stores to buy items for her Sensory Stimulation Box.
Dad and I have lots to do on Wednesday in the way of preparing for Medicaid..so Wednesday is a good day to visit mom. I will catch up with the Respiratory Therapist on Tuesday.
Her CNA said that mom had such an active weekend that she probably is just really tired today.
I know she needs to be still and heal...but I still don't like her less active days like this one.
Am exhausted tonight...Love to all...Kath
"Be still, and know that I am God" (Psalm 46:10)
Mom Update, June 29, 2010, Tuesday
Mom was sleepy when I saw her today...not out of it but sleepy. I was able to rouse her by wiping a cold, wet towel on her face. I did her physical therapy with her and some aromatherapy as well. She tracked the vanilla and the frankincense again and flared her nostrils slightly. She also grimaced a bit when I initially worked on her left leg--this is good because it is the side she doesn't use much--so it shows feeling in that side. Her left arm and hand continue to be swollen (edema) despite the lasix/lasics?? (not sure of spelling). Claudia played sound bingo --- let mom listen to sounds and then labeled them -- and mom opened her eyes for this! Claudia also sang Willie Nelson songs from the CD she bought her too. When the nurse came to give mom her meds (vancamyacin and supplements), I sang "Just a spoon full of sugar" from Mary Poppins to her and she raised her eyesbrows and put on a pleasant face. (Mom was such a storyteller and performer---she loved to sing all the time when we were little! She loved Mary Poppins).
While dad and Anthony were there earlier in the day, they spoke to a respiratory doctor who said mom was doing well and that they were working with her when dad and Ant arrived.
Still trying to gather the things we need for the tactile stimulation kit.
Even though days like this, when she isn't so alert are frustrating in ways to me, I try to remember that this isn't about me and how I feel; it's about her well-being...and then I remember that my purpose now is to make her life more pleasant in what ever way I can during this season of her life. That, in itself, is quite a gift and a privilege....especially after all she has given me already.
"He makes me lie down in green pastures, he leads me beside quiet waters," Psalm 23:2
While dad and Anthony were there earlier in the day, they spoke to a respiratory doctor who said mom was doing well and that they were working with her when dad and Ant arrived.
Still trying to gather the things we need for the tactile stimulation kit.
Even though days like this, when she isn't so alert are frustrating in ways to me, I try to remember that this isn't about me and how I feel; it's about her well-being...and then I remember that my purpose now is to make her life more pleasant in what ever way I can during this season of her life. That, in itself, is quite a gift and a privilege....especially after all she has given me already.
"He makes me lie down in green pastures, he leads me beside quiet waters," Psalm 23:2
Mom Update, June 30, 2010, Wednesday
Mom had a GREAT day! Maybe the best one yet.Dad's cousin, Angelo, and JoAnn (his daughter) and Madeline (his wife) visited mom today from 12-2ish (then left for lunch and returned). For you family members who know Angelo (aka Jr. Bonura), need I say more??? Angelo is a lively, loud, funny person who refused to give up on Mom's not opening her eyes. The three first talked to mom, reviewed her sound bingo sounds, and played music for the first 45 minutes of their visit...and then Angelo began to sing to mom---he sang, "Come meet the METS" song and suddenly, mom opened her eyes WIDELY, pointed a finger at him, and mouthed something!! She kept her eyes open widely for about 15-20 minutes straight---a record breaker!! Mom tired out and they then left for lunch. (Needless to say, Angelo has found his call in life--waking people out of comas---the nurses said they'd send him from room to room singing. Dad said that he wants to either not let Angelo go home or, at the very least, record his voice!!)Mom's friends, Flo and Maureen, also visited her during the lunch break. They read to her, sang, touched, loved on her, talked...mom MOVED HER RIGHT FOOT MANY TIMES while they visited with her!!! Mom also moved her head, right arm and leg (took Madeline's hand in hers to her own face), feet, grimaced (and did this once when I was trying to do her arm physical therapy...she pulled it away slowly and made a face of disgust), mouthed what seemed like words at times... When I left today with Dad, it looked like mom waved goodbye to us!! And when I said, "I love you" as I left---it looked like she mouthed, "I love you" back.Shelby, the speech therapist, worked with Mom today again. She reported that mom was semi alert at that time and that she was able to get mom to groan and make sounds!! I LOVE SHELBY!!! She is as passionate about what she does as Claudia and I are!! Crazy!! but so great!The respiratory therapist said that they tried to wean mom from the vent again on MONDAY....yucky day for mom that day....bad day...sleepy day. The attempt was not successful. We have a Family Care Plan meeting on Thursday, July 8 in the morning. Hopefully, we will have enough data about mom to get all the therapists on board with the therapy. So pray.Lenny and dad are there tonight while I am at work.Mom's left arm is still really swollen---I am going to buy a piece of foam and shape it in an incline to use to incline her arm. I am overwhelmed by her day today...just when we needed hope, she gave us some again.Thanks for all the prayers--please don't let up on it now. xoxoxox Kath
"This is the day the Lord has made; let us rejoice and be glad in it." Psalm 118:24
"This is the day the Lord has made; let us rejoice and be glad in it." Psalm 118:24
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