So dealing with the doctor and hospital has been a fiasco. My dad and I are totally spent, but life must go on. Saying my mom is not better would not be completely accurate. Her infections are gone, so they stopped the antibiotics. She is on the NG (feeding) tube and fluids, so she is getting plenty nutrition/fluids and tolerating them well. But, there has been an issue with her white blood count dropping and she's had 3 transfusions in the last week. They said the blood work looks good now, but the last one was Wednesday. So we will see what it looks like the next couple days. The biggest problem though is her delirium. She is still sleeping alot and not very responsive. She has moments, but even then we are not sure she really understands us. Tuesday will be three weeks, but it feels like an eternity. Saturday I emailed the case worker at Methodist Willowbrook. It was brought to my attention she came to my mom’s room when we were not there. I informed them they are to notify us if there are questions they have regarding her transfer, being that she is still unable to communicate. I asked if she could give me information regarding the notes on my mom’s NG tube, as to who wrote the orders and for how long. The social worker contact my dad again, regarding a transfer. When he asked if she received my email she said “Yes, but I didn’t reply because I didn’t have an answer”. And there you have it.
September 3rd- Wednesday
Dad and I met with the hospital and they were not interested in hearing what we had to say in regards to the care my mom has received. We brought up all the communication issues, but all they wanted to know is if mom could get her PEG tube. We did consent for her to get the PEG tub, but feel like the meeting was a waste of time. They mainly want her to get the PEG because they are having a difficult time finding a place to send her with the NG tube.
September 4th- Thursday
Mom was assigned a new doctor today. Spoke with him briefly over the phone and will meet with him tomorrow. They said she is schedule to have her procedure done tomorrow, no known time.
September 5th- Friday
Came to the hospital early, in case they took her early for the procedure. Only to find out it was cancelled and rescheduled for Monday. Apparently they did not think to start her contrast in her feeding tube so she would be ready for the procedure. So what’s new, someone dropped the ball….again. Mom’s new doctor came and evaluated mom. He sat and talked with me for awhile, trying to get a clear picture of her condition prior to coming in and now. He said he was going to meet with the neurologist to see what mom’s risk were for a spinal tap. The rheumatologist also came by and evaluated mom. He was very concerned about her diagnosis, that it was now possibly Inclusion Body Myositis. He felt that the methotrexate and steroids may be working against her. He was going to stop the methotrexate and begin 4 days of IVIG therapy. He said this is the last treatment option they have for her and we will have to see how she responds to it.
September 6th- Saturday
Right now mom is highly susceptible to infection right now. You cannot visit if you are sick. Even if you are well please wear gloves and we would prefer masks until she doing better, as instructed by her rheumatologist. She will have the PEG tube placed Monday for sure and a spinal tap later in the week. She starts her four day IVIG treatment today, we hope it gives her a boost. We are anxious to get some answers this week. They had to change her NG tube and PICC line. Somehow the NG tube had come out too far, so they placed a new one. The PICC line was infected so they removed it and started her on antibiotics.
September 7th- Sunday
Mom started received the contrast tonight so she would be ready for her procedure tomorrow. She seems more alert today than she has been lately.
September 8th- Monday
This morning the put a new PICC line in and her PEG tube in. Pastor Leeland came by while she was having the procedure done and said prayers for her.
September 9th- Tuesday
Speech therapy came by today. Cleaned mom’s mouth really good and worked with her a little. She also left her some exercises. Mom’s doctor came by today, he said because of the infection and because her cognitive state seemed to be improving he did not think it was a good idea now to do the spinal tap, but he would monitor her condition.
September 10th- Wednesday
Today the doctor met with to explain mom’s current condition. Today they had to stop mom’s food, she was having some problems with absorption .He said the rheumatologist did not feel her prognosis was good. That she has a slim chance of returning to her base line. That there was a chance or possibility, but that it was very slim. He said we needed to prepare ourselves because would probably get worse and that the possibility of her needing a ventilator were something we needed to think about. He ask about her DNR status and if we had POA. He said because of her current condition he felt she needed to be at Methodist in the Med Center, under the care of the Baylor Neurology Department so he was requesting a transfer. We completely agreed and felt she should have been over there weeks ago. It was a very hard day for all of us. Her white blood count was down again, so will be doing another transfusion tonight.
September 11th- Thursday
Today they took mom’s NG tube out and resumed her food.
September 12th- Friday
The last couple of nights mom has had some bleeding and her white blood count was back down. She will be getting another unit of blood transfused tonight and they are going to monitor the bleeding to see if it’s residual from the PEG procedure. If the bleeding does not improve they will have to do an endoscopy or colonoscopy, which is a high risk due to the anesthesia and possibility of ending up on a ventilator.
September 13th- Saturday
The doctor said the blood was residual, so it doesn’t look like no new bleeding. Since she had the transfusion last night her white blood count is back up.
September 14th- Sunday
Today was a pretty uneventful day for mom, thank God. She had several visitors today and was pretty pooped. We met with family to talk about my mom’s condition, it was emotional and tiring.
September 15th- Monday
Mom had her first PT today and did really well. The rheumatologist also said it does not look like she is no longer in a flare, but we are not sure how he is determining this. He was pleased with her strength. No news on the transfer to Methodist Med Center, we are still waiting.