Claudia started the day with mom and called me very upset shortly after she arrived to tell me that I needed to come to the facility asap. She said we needed to meet with someone about a report she received from one of the staff there. Evidently, this staff member came in to assess mom and told Claudia that mom had “suffered additional cognitive cerebral atrophy” while in the hospital. Claudia asked what the person meant and was told only “you need to get the hospital records and read them. They are very easy to understand and will give you a lot of information about what happened to your mom.” In the meantime, Claudia was trying to do her own assessment of mom’s abilities and was finding that, much to her dismay, mom did not appear to remember any of the activities she used to do before the incident on December 22. Hand her a marker and she just stared and didn’t try to take it. Show her written words and she just stared. She did a lot of blank staring while both Claudia and I were with her. Claudia did a full physical therapy/range of motion exercises. Mom was also assessed by a physical therapist and the person checked mom’s reflexes and mom didn’t respond at all. Prick her foot with a pin—no response. Prick foot deeper with the pin—no response. Try to have mom look at you—no response. Try to have her track you---no response. Just a blank stare to the right side wall. We then found the medication nurse to ask what medications mom is on and were told that she is now getting her blood pressure medication twice a day as a standing order and no longer “as needed” as before the incident. We then asked that the doctor review this again and put her back to the “as needed” basis since her blood pressure has been stable. The side effect of this drug is “coma like symptoms, tired…” Claudia and I then asked the nurses at the nurse’s station to show us her charts and were told that couldn’t be done—that we’d have to ask the head of the nursing department to go over the records with us. We went to the person who gave Claudia the poor hospital report (which by the way, did not match what we were told at the hospital---if you recall, mom had 2 CAT Scans in the hospital and both came back without changes from the October CAT Scan which is GOOD). The person who originally gave the poor report said the report was from the nurse’s station. We looked at that report while we were at the nurse’s station and nothing like what was said to Claudia was in the report. We went to the head nurse and asked to go over the records/reports with her and she told us only the doctor could do that so she left a message with the doctor to call me to arrange a time to go over the report. Claudia and I left the facility for work. I called the neurologist and played phone chase for about 7 or 8 phone calls until reaching the right person and leaving a message for the neurologist. Yesterday, I went to the Medical Records Department in the hospital to ask for mom’s medical records. I was told that I needed to produce a “POA – Power of Attorney” form and then sign and date a form that requests a copy of all the records. Today, later in the day, Claudia had dad sign the form, date it and give her a copy of the POA form. She brought all this back to the Medical Records department of the hospital. When she handed all this over, she asked, “OK, now what happens?” I never thought to ask that question since my initial question was, “I’d like to obtain a copy of my mom’s medical records; how do I do this?” I thought the medical record person would have told me the answer. Well…I was wrong. The wonderful health care system we have continued to amaze me. After Claudia asked, “Then what?” the person said, “Oh, then we look for mom’s records and count how many pages there are. And then we make up an invoice billing you .25 a page. Then we mail you the invoice and then you pay us. Then we look for her records again and copy them and send them to you. It all takes 3-5 weeks to complete.” Did you ever??!!!! Claudia asked if she could pay now or somehow speed up the process but was told, “No. Sorry.” I came back to mom later in the afternoon and found her in bed awake and looking out the window. She did look at me when I spoke to her and she did smile at me (slightly) and have a happy glow about her face as she looked at me. I talked to her and she looked at my face as I did so. She mouthed something to me a few times but I didn’t catch what it was at first. Then I showed her a gift someone from her choir brought her today (Terence). It was a small, beautiful, ceramic Christmas tree hinged box. It had been sitting on the window sill so it was cold to the touch. I showed it to mom and then touched it to her cheek---she immediately closed her eyes and mouthed, “Oooo that feels good.” Then she mouthed, “Again” and “that feels good” again and again. I left to go to the bathroom and when I returned, mom’s social worker was in the room talking to her. The social worker said that when she said, “Hi Dotty” to mom, mom mouthed, “Hello” and when she asked, “How do you feel?” Mom mouthed, “OK.” We then went down the hall to review the medical records together (because I told her about the report given to Claudia this morning). The only mention of any cognitive slowing was just that “cognitive slowing” and that is what the neurologist told us back on December 8 during her last visit there. He was still hopeful then and loved the progress mom had made. But there was no reference to anything else. This report of cognitive slowing was a result of an EEG. To our knowledge, mom only had 2 CAT Scans in the hospital…no EEGs. It appears that the person who gave Claudia the report this morning (verbally) was repeating old information we heard already and not new information.
I spoke to the neurologist earlier in the afternoon and he reported that he didn’t have new or complete information on mom because his associate was the last to see mom in the hospital. He said he’d have the associate call me. In the meantime, he wanted us to schedule an appointment with him (which we did—mom sees him again on January 19 at 4 pm). He said that when we meet with him on the 19th, he would review all her files again, reassess her, and decide if further testing needs to be done. He said that a person does NOT suffer from an acute bout of “cognitive cerebral atrophy” but that this is something that happens to all of us each and every day (brain cells die). He asked how mom was doing and I said that she was sleeping a lot still and that she had been fairly responsive and alert when in the SICU and awake but less so over the last 3 days…and I asked if this was normal. He said it wasn’t normal but that given mom’s age, the trauma she’d been through and her physical and mental state when the incident happened, yes, it seems normal and that “this is going to take some time.” He said to just keep doing what we are doing.
Mom’s nurses during the day and late afternoon and evening said that mom was awake sometimes during the day (Claudia and I worked today, Dad is sick with the stomach bug). They said that mom had a pleasant face when spoken to and when asked to open her eyes, she squinted them closed tightly. Another nurse said mom was awake but not responsive to her. Another nurse said mom had her eyes open and tracked her but did not assist by holding the bed rail when being changed. One nurse even said that she spent some time in mom’s room with her today and saw that mom was moving her left hand and leg more than her right ones and remembered that mom used to move her right side better!!! She couldn’t believe the change!! We noticed this in the hospital too!! We saw that mom was using and moving her left side more than her right!! Several people over the last 2 weeks mentioned that it would be so cool if mom woke from this incident stronger than before. I thought this too on the first day the incident happened.
I did mom’s physical therapy/range of motion exercises. Back to the basics! Mom slept after an hour of being awake when I first arrived. Con and Sammy came after dinner to visit with mom. We did her full physical therapy/range of motion exercises. I did a manicure and pedicure on mom and she winced and mouthed, “Ow” a few times. Con, Sammy and I held hands and gathered around mom's bed and prayed together before tucking her in for the night. She was asleep. Sammy proudly wore her “Don’t quit 5 minutes before the miracle happens” T Shirt to school today. So many of Anthony Michael and Sammy’s friends and classmates know mom and dad from years ago as their religion teachers.
The grandma of one of Claudia’s kids wrote this to Claudia this morning…how timely. God knows. He cares. He’s there.
“All things work for the good
Though sometimes we can’t see how they could
Struggles that break our hearts in two
Sometimes blind us to the truth
Our Father knows what’s best for us
His ways are not our own
So when your pathway grows dim
And you just can’t see Him,
Remember He’s still on the throne.
God is too wise to be mistaken
God is too good to be unkind
So when you don’t understand
When you don’t see His plan
When you can’t trace His Hand
Trust His Heart
He sees the Master plan
He holds the future in His hand,
Don’t live as those who have no hope,
While our hope is found in Him.
We see the present clearly
But he sees the first and last
And like a tapestry He’s weaving you and me,
To someday be just like Him.
He alone is faithful and true
He alone knows what is best for you.
When you can’t trace His hand
When you don’t see His plan
When you don’t understand
Trust His Heart.”
Today was mentally draining. I am so glad that each day is a new one full of new hope and beginnings and I am thankful to God that I am finally learning that each day’s worries only last as long as today exists.
“His mercies to us are new every morning” Lamentations 3:23
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