Mom Update, December 21, 2013, Saturday

“Glory to God in the highest heaven,

and on earth peace

to those on whom his favor rests”

                                                                                                            Luke 2:14

 

When I began to think about what to reflect on this year, I was reminded of a wish for peace. Peace in the world. Peace in the community. Peace in the family. Peace in the heart.

 

For many of us, this is a season of joy. A time to travel from near and far to be together with those we love. A time of family and friends, cooking and feasting, laughter and good things. Sometimes though, bad things happen to good people. Bad things happen right in the middle of our otherwise good worlds and lives that make us question whether such a thing as peace exists.

 

This past year has been a tough one for our family. As many of you know, two years ago, we experienced a miracle. Mom had finally come back home to us…vent-free. Learning to walk, able to talk, partaking in life with us once again following an 18 month journey that often bordered on the edge of death. We all had a joyous, and miraculous year with mom, each and every one of us. Then suddenly, right in the middle of all the good things that surrounded us, a year ago, in November of 2012, mom had a second, huge stroke. She spent the majority of 2013 in hospitals, experiencing more strokes and slowly losing more and more ability to function like a typical person as a result.

 

Now, she can hardly move at all (her original, left, weak side has become her strong side—which is still pretty weak and nonfunctional). She has lost the entire speech center of her brain and is no longer able to speak. Many days she is asleep or highly neurologically agitated (agitation not due to emotional awareness but brain dysfunction) and requires sedation to ease the condition. Every six weeks or so though, she appears to be aware of us, tries to get our attention by tapping us, and even speaks a few intelligible words (though most of her speech at these rare times is largely jarbled). Given her current condition, we can’t help, at times, to stop and wonder why mom is still here on earth in this present condition of what appears to look like a really bad place to be, and we wonder, “Where is the peace for her?”

 

Though we all experience good things in life, we have to admit that sometimes, the bad things seem to outweigh them. It’s during these bad times that we wonder most about where peace can be found, or if it even can be found at all. But then we are reminded that our Savior, the Prince of Peace, came to us right in the middle of a dark, dangerous, calamity-filled world too. When Jesus came to dwell among us, the world was far from a peaceful place. The local people tended sheep and the dangers to their livestock were so great that they had to live in the fields in order to protect their livelihood. Bad things, in the form of predators, would come in the middle of the night to rob, kill, steal, and destroy. We, too, live in a world of turmoil and bad things that happen unexpectedly…our predators are sickness, destruction of home and property, job loss and poverty, division of relationships, separation, and sometimes, even death. Similar to the world in which we live, the shepherds, who were common-folk like us, had to be constantly on guard against bad things happening. So you may wonder at how God could have seemingly overlooked such bad things in the world, and more personally, in our lives, and puzzle over how we can go on in the midst of our adversities. Actually…that’s where the peace comes, in the birth of our Savior:

 

“And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger. Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, “Glory to God in the highest heaven, and on earth peace to those on whom his favor rests.” Luke 2:9-14

 

God sent us a gift of peace when He first came to dwell among us so many years ago. But what exactly did He mean by peace, especially in the midst of so many bad things happening in the world at that time, and in our worlds now? The word peace in this verse means ‘when all essential parts are joined together resulting in God’s gift of wholeness.’ How could mom, or anyone else who appears to be suffering through bad things, be peaceful or whole? How can a ‘gift from God?’ be found in the midst of her current condition? I dug deeper. The root word for peace comes from the word eudokeo which means converted or transformed. The meanings of transform and convert are: to change in form, appearance, or structure, metamorphose; to change in condition, nature or character, convert; to transmute or change from one condition to another; to change in form of a figure without changing the value.

 

When God came to dwell among us, He gave us the gift of transformation, the ability to change from one condition to another. In every circumstance, we have the ability to look around us, at us, or above us and be converted or transformed. We have been given the gift of being able to rise above life’s circumstances by resting in Him, in His favor. Sometimes, the outward appearance of things isn’t the reality of what is. Because of God’s gift of peace that He brought to us when He first came to dwell among us, we are able to enter into a secret place where only we and He dwell…no one else shares this place. It is a private place where we commune with God and are converted and transformed into a condition that changes the outward circumstances and appearances easily seen by the naked eye, and into one of metamorphosis.

 

Metamorphosis is a profound change in form from one stage to the next in the life history of a being…just like a caterpillar waiting in its cocoon stage to pass on to the butterfly stage. That’s where many of us have the ability to be when bad things happen—in the cocoon with God, because that was the gift He gave us the first time He came to dwell among us. I believe that’s where mom is now. In her private, peace-filled cocoon with God waiting to pass on to the next stage in the cycle of life---the butterfly stage, where her spirit sets flight on its newly formed wings to transcend to our final destination in heaven. We each get glimpses of that place of transformation each and every day of our lives, if we choose to accept God’s gift of peace.  I am reminded now of a saying I keep pinned to the wall in my office: Peace…It does not mean to be in a place where there is no noise, trouble, or hard work. It means to be in the midst of those things and still be calm in your heart.

May you all receive God’s gift of peace, given the first time He came to dwell among us years ago. Peace and Be Well ~ Kathy and Lenny

 

Mom Update, July 13, 2013, Saturday

Just a fast update. Mom became stable enough to leave the hospital late on Thursday and was moved back to a local long term care facility. She has altered between that agitated state she gets into and being calm (sedated). She still is on the vent, feeding tube and cannot talk. She appears to know us at times, while at other times, she appears to be in a zone of her own. She still has traces of the pneumonia in her lungs but this is typical as it takes a while to clear up (weeks). We continue to visit with her each day but our visits sometimes agitate her rather than comfort her now. Perhaps this is her way of trying to communicate? She has had 4 major life-threatening incidences since November. She has been through a lot but continues to hang on. She is a strong woman.

Dad is remarkable. What else can I say? He is the picture of courage and model of how to take life as it comes and move through it each day in a holy way. He has bought a life alert button to wear (I don't think he hooked it up yet! but he has it), and no one even told him to do this. He said he just felt it was time and a smart thing to do since he now lives alone. Unbelievable. He cries a bit each day for mom. He continues to visit her multiple times each day, greeting her with, "How's my girl?" He never leaves her side physically or emotionally. He took a giant step last weekend (4th of July) and went upstate with most of us, just like we all used to do (Terry stayed home to be with mom). I mostly try to be strong around him and have adopted the role of social director--going on short trips upstate with him or out to dinner or a movie...helping him to fill each day in the most joyful way possible (when I am not working). Anthony and Claudia go see mom each day with him. Being with dad is to be in the presence of such strength and courage and love. Dad is just amazing because you can see that it is far from easy for him to do these things but he does them because "it is what it is" and he knows "who he is" and who are to be before God.

Today is Mom and Dad's 56th wedding anniversary. Dad is feeling really down. I can only imagine that he is reliving the joyful events of this day as it was 56 years ago today. Please hold him and mom up in prayer today. Thanks so much.

"This is the day that the Lord has made. We will rejoice and be glad in it." Psalm 118:24

Mom Update, June 17, 2013, Monday

Just spoke to mom's doctor this morning. He said, while she still has pneumonia and a urinary tract infection, she is dramatically improving since last week. Her white blood cell count went down from 32,000 to 11,000 (which is good). A chest x-ray done last Saturday showed that the pneumonia is clearing up (the type she has is 100% fatal with other infections). She still needs to be in the hospital because she still needs intravenous antibiotics. BUT she is definitely getting much, much better.


Last week, after she was admitted into the hospital again, she had been so very, very peaceful. We haven't seen her this peaceful in years. She was even trying to talk to us and was actually able to talk to us a bit as well. I had asked her what my name was and she said, "Um...I don't know...Ava?" Some of what she was saying was real sentences, phrases or words spoken out loud, while at other times, she just mouthed the words. It was miraculous.
By Friday, she was beginning to become very agitated again (for her, this means seemingly involuntary motor movements of the arms and legs---it looks much like a seizure of sorts but isn't). The agitation, as the medical personnel refer to it, becomes so bad at times that mom needs to be heavily sedated to stop it. It has to be stopped because her blood pressure rises and heart rate increases when the agitation starts.

God's Will and Peace are what we all need at this time. Some of us question why mom is being left in this state. I don't know the exact answer, but I do know that we, as humans, can't even begin to understand the mind of God. We also can't see the world or anything in it through His Eyes. For all we know, mom's outward appearance, which isn't so great to look at right now, may show nothing of what she is experiencing in her spirit between her and God---she may, in fact, be having a grand old time with Him...we don't know. All we can do is take things one minute at a time and trust in Him Who holds all the answers in His Hands.

I hold onto these 4 scripture verses at this time....
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
"To every thing there is a season, and a time to every purpose under the heaven" Ecclesiastes 3:1
"My thoughts are nothing like your thoughts," says the LORD. "And my ways are far beyond anything you could imagine." Isaiah 55:8
"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1

Mom Update, June 12, 2013, Wednesday

Just a quick update on mom. At the end of March, right after Easter, she went into respiratory distress and it seemed as though she had a 3rd stroke as well that affected her ability to swallow and breathe well. She was sent to the hospital and remained there for 2 months. She was also put back on a ventilator and feeding tube.


She was just transferred to a long term skilled nursing facility this past Friday. Last night, she had difficulty breathing (even on the vent) and was sent to the hospital in the middle of the night. She was diagnosed with Klebesellia pneumonia which is caused by a weakened immune system caused by bacteria growth from a catheter when it is in for a long time. She has 3 very serious and severe infections as well that are resistant to any type of antibiotic. A pic line was put in this afternoon so that she can receive a combination of 4 different antibiotics as an attempt to hopefully fight the infections, but the prognosis is not good. She had a cat scan with contrast today as well. Her white cell count is literally through the roof...which means a huge infection.
Mom continues to be a strong woman. The nurses had to hold her arm still to do blood work because of how strong she is. She appears to be in a semi-conscious state these last 2 1/2 months. Up until last night, she could shake her head yes or no when questioned sometimes, and could give you a kiss when you asked for it. She cycles through a series of motions in about every 1 -2 minutes when she is awake---she stares blankly, then grimaces in her face as though in pain or upset, then her arms and legs twitch and jerk around, then she closes her eyes peacefully, then the cycle repeats. She has been through so much.
Thank you so much for all your prayers and support. They mean the world to all of us.
"God does not respond to what we do; we respond to what God does. We've finally figured it out. Our lives get in step with God and all others by letting Him set the pace, not by proudly or anxiously trying to run the parade." Romans 3:27-28

"For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory." 2 Corinthians 4:17

Mom Update, Wednesday, April 17, 2013

Hello Everyone,
Just wanted to give a quick update on mom. She remains in the hospital for now.

Though she is on a respirator, the pulmonologist reports he has full confidence that she doesn't need it. She is getting another tracheotomy today at 2:00 p.m. Please pray. The trach is being put in to handle all secretions and swallowing issues for now. Since she needs to be occasionally suctioned for secretions, she needs a trach. We do not know the exact cause for this particular problem yet she may have experienced another stroke which paralyzed her vocal chords (hopefully, not...I pray that God sends a choir of His angels to sing to mom now) or she may just be too sedated to swallow efficiently. In any event, getting the tube out of her mouth is the first step toward determining what is wrong with her.

From what the doctors think, it appears that mom had been bleeding internally from the aspirin therapy she was on. This then caused a dangerously low blood count which, in turn, caused respiratory failure. The bleeding appears to be gone now (aspirin therapy stopped---but it is the lesser of 2 evils--she needs such therapy to avoid another blood clot). Once the tube is out of her throat, a test can be done on her vocal chords to see if there is paralysis. She can also get an MRI at that point as well to determine if there was another stroke.

She is not awake, largely due to sedation. When she hears our voices, she stirs and becomes agitated. She was crying the other day, which breaks my heart.

Claudia has been teaching a young person with special needs for many years now and this person has met mom on many occasions. Since part of this person's learning experience involves socialization, Claudia often brought him and mom out to lunch and other various places together. This beautiful young adult has been so concerned about mom. Last night, Claudia received several phone calls from this person and was told that in his church, he carries the cross at the beginning of mass...and he told Claudia when he makes the sign of cross after carrying the cross next time in church, it will be done for "Nonny."

There are angels all around us every day. Claudia's student is definitely one of them. Such a blessing. This has been really very hard on dad especially...his birthday is this Saturday and he will be 81. I feel so blessed to remember the wonderful backyard celebration we had with him last year at his house with mom and all our friends and family there.

Even in the midst of sorrow there are so many blessings around us. Joy is a matter of perspective.

Please continue to pray for mom and dad...for God's Grace and Mercy and ever Comforting Touch to be on us all.

Love and Prayers to you all.

Kathy

"But I'll take the hand of those who don't know the way, who can't see where they're going. I'll be a personal guide to them, directing them though unknown country. I'll be right there to show them what roads to take, make sure they don't fall into the ditch. These are the things I'll be doing for them--sticking with them, not leaving them for a minute." Isaiah 42:16 (MSG version)

Mom Update, Tuesday, April 9, 2013

Mom is still in ICU. It is very frustrating how every nurse has their own slant to things. It appears as if they are only concerned with the symptoms and not what caused this whole thing. When I was here yesterday, I was taking notes on my phone as the nurse gave his report. He became angry and said, "I'm not going to compete with a phone". I explained the confusion and said I was taking notes and showed him my note pad. He apologized but still seemed annoyed by all the questions. A nurse practitioner came in and ask about her history. I laughed and said, "ya got an hour?" I then told her an abridged version of moms story. The male nurse who was annoyed with me had a physical change come over him. You could see his whole body relax as he leaned in closer to hear her story. It is amazing the effect her story has on people.

She is getting another transfusion today. The reason for the transfusion is different depending on who you ask.   Her blood pressure seems to go from very low (50s over30s) or very high and the numbers close together (140s over 130s)???

When I ask they tell me that's not that bad and that it eventually goes up??? I have had blood pressure issues practically my whole Life and those numbers are weird. Her echocardiogram was good, so her heart muscle is strong. She was put on cpap for a little while today and the back on full assist. (all vent terms) cpap is very little help from the vent and is used to exercise her lungs. Full assist means the vent is breathing for her. Today's nurse said the transfusion was due to low electrolytes! I explained the reason yesterday nurse gave about a transfusion and she said no it's the electrolytes. Really? Let's put Gatorade in the IV? Lol! She occasionally opened her eyes

They are keeping her sedated so she will be calm while on the vent. She wakes up occasionally and cries and squirms.

The intensivist (intensive care doctor) is the pulmonary doctor. There is a general doctor in charge but her intensivist is a pulmonary doctor. We had to jump through hoops to get a neurologist to see her. As of Tuesday afternoon no one has come. In their mind, the history of aneurism and stroke is insignificant. She came in with difficulty breathing so all she needs is a pulmonologist. No one seems to know why she is bleeding internally. A gastroenterologist came to see her and prescribed protonix. It is a generic stomach med that everyone gets while in the hospital to prevent reflux or ulcers.

I get the feeling that she isn't well enough to withstand the tests they have to do to find out the cause of things.

She is very swollen  and the Edema may be from excess fluid being given to her in the form of IV. (Meds saline blood) She isn't on any proteins so she will swell.

Who even knows if any of this makes sense because if I tell one of the nurses what another one says the look at me like I have three heads. She is very agitated, so please pray for peace.

Peace and Be Well,

Psalm 29:11
The LORD gives strength to his people; the LORD blesses his people with peace.

Claudia

Mom Update, April 8, 2013, Monday

Mom is back in the hospital. She is currently in God Samaritan Hospital in West Islip, but her nurse has said that she really cannot have many visitors because they are trying to keep her calm and less sedated as possible and the noise of people in the room can prevent her from resting and healing.


That said, mom went into respiratory failure again on Saturday in the middle of the night. She appeared to suddenly have a lot of fluid in her lungs and throat and couldn't clear her throat to breathe. She was rushed by ambulance to the hospital---it was evidently a very bad emergency situation so she needed to get to the closest hospital possible.

Right now, she is intubated (has a tube down her throat through her mouth that is attached to a vent which is helping her to rest her lungs more than helping her to breathe for right now anyway). She also has a feeding tube through her nose and into her stomach as well. She has been sedated in order for her to accept the tube down her throat---human tendency is to pull it out because panicking can cause a choking feeling.

There are no test results pointing to why this happened or what exactly happened either at this time (it is the weekend too so only emergency decisions are made). She has had a Cat Scan which showed no bleeding in the brain (no large sign of stroke---other hospitals have followed the CAT Scan with an MRI but this hospital doesn't feel this is necessary now because mom has been awake, alert and responsive before sedation). No neurologist has been assigned to her either for this reason of alertness... We plan to look into the possibility of getting one to look at her given her history. She had a doppler sonogram which also showed no blood clots in the legs. She had a chest x-ray which showed clear lungs (they did suction her first though) so no signs of viral pneumonia. Bloodwork will reveal any bacterial pneumonia if there is any---no results on that yet. She had preliminary bloodwork which showed low hemoglobin? counts so she needed a blood transfusion. There is evidence of internal bleeding somewhere but the site is unknown right now.

She has been on new antibiotics for a UTI and also meds for tremors...though the doctors didn't think her condition was caused by any of this.

She could have congestive heart failure, or another stroke, or something else...not sure what caused all this.

She did try to look at us and dad when he came to talk to her...but nurse said it agitated her and she needs rest. Dad has a bad head cold. He and I were upstate for the weekend because he needed a break and some respite.

It has been a rough journey these past few months since her second stroke in November which affected her entire left parietal lobe, the Broca and Wernicke centers of the brain too. She has had both sides of her body weakened by the strokes---her left side, which was the original weak side, is now the strong side...though she had been trying to move her right arm more and more each day. She has been unable to speak, though she comes out with a phrase or full sentence or 2 or 3 that relate to the conversation at hand, which her neurologist said is truly miraculous. She has been on pureed food since the second stroke occurred too. She had been in a rehab center from late November through late February--early March and has been home since then. Dad and Terry take care of her largely---they are quite the team to watch---truly inspirational. They sing to her while changing her and try to encourage her too. Claudia and Anthony also continue to work with her for speech, and physical and cognitive therapy. All formal therapy, except physical therapy had ceased at home and in the rehab facility due to mom's not being able to progress quickly enough. I did see progress while she was at home though....slow, really slow, but progress.

When I am able to remain "in the moment," there is still so much kindness, goodness, care, and love around, through us, all....even throughout this whole ordeal. It has been, and continues to be, good to be able to even visit mom and whisper, "I love you." For this seemingly small privilege, we are blessed. Being sick isn't God's Will for us...health is His Will...but life dishes out some awful stuff at times (for various reasons, some of which we can be responsible for while others are out of our control). I thank God He is here to minister to us and help us through all these difficult times.
Thanks so very much for all the prayers. They mean more than words can express.

"Give us this day, our daily bread." Matthew 6:11