Update on Carolyn
[FONT=”Comic Sans MS”][SIZE=”2″]From Matt.
Thanks so much for your concern. Carolyn is in rehab. Still has the trache in but it may be out by the end of the week. She was scheduled to come home on April 4 (I tried to get her out before she went crazy) but the doctors convinced her to stay a little longer. There have been most days that she cries all the time. She hate it there; she wants to come home; she misses her children, etc. It’s become a mantra.
Two days ago her husband called and said he didn’t know what to do. He had never seen her so emotionally disturbed with fits of crying and anguish. He didn’t know what to do. We had been saying over and over that she needed a psychologist or psychiatrist to help her. I told Brendan to ask her doctor and meanwhile I’d try to work on something. I called Kessler Rehab in Chester, NJ, whom a doctor friend had recommended weeks ago but Carolyn and Brendan refused to move her. The admin office found it hard to believe that part of her treatment had not been psychological. They told me to have the doctor call them and they would see what they could do as far as admitting her.
I called Brendan back and he said the doc had scheduled a psychologist and and psychiatrist. I said that i don’t have any faith in this hospital or their doctors and informed him about Kessler. He said he’d call me back. When he did he said he and Carolyn decided she’d come home April 18 as long as she would eat her food (which she hasn’t been doing) and that she was more indepedent with voiding waste. He said she had calmed down and now felt better that there was light at the end of the tunnel.
I’m for whatever makes my daughter happy. But I had tried the “light at the end of the tunnel” and it seemed to work psychologically but only for a couple of days. So, it’s been a day and when I went to see Carolyn yesterday it was the first time in weeks that she hasn’t cried. I can see she is really afraid that any setback will keep her from coming home and I’m worried that if that happens she’ll be worse than before psycologically.
Well, that’s about it. We’re praying tha in the end all will turn out alright.
Update on Carolyn
I was wondering how your daughter has been doing? Can you give us an update?[/QUOTE]
It’s been a while since I’ve written. Carolyn was in rehab and seemed to be getting a little better each day but not really regaining strength. They were talking about sending her home. I was afraid she was malnourished. She still was not eating. We voiced our concern to the speech therapist who works with the nutritionist. She said they’ve been monitlring her food. My question was, “the food delivered or the food she actually eats!” She said it was the latter. I wanted her to tell me what they recorded she had eaten. She checked the log and said “about 10%” of her food” – which was about accurate.
Everytime they would try to sit Carolyn up in rehab her blood pressure would drop and they said this was caused by “pooling” of the blood in her legs. In addition because of this blood pressure drop she would get dizzy. They started talking (and my daughter was begging) to make prepartions to send her home. I asked, “you’re talking about sending her home when she’s in this condition and hasn’t eaten for 8 weeks?!”.
As of last Friday we were scheduled to have a meeting with the staff on her case yesterday to discuss her exiting the hospital. They were trying move her introvenous injection port but couldn’t find a vein on four separate occasions that day. On Friday she contracted a cold from her neighbor and we were told they “almost lost her” that night because she couldn’t cough to expectorate the flem from the cold. They also found she was malnourished and that’s why they couldn’t find a vein. She was put into ICU on Sat and got a tracheotomy on Sunday and a feeding tube put in on Monday! Now she cannot talk, see (vision blurred since the beginning), breath easily or move her limbs. She is worse than when she came into this rehab center.
They told us yesterday they are going to take her out of ICU today and put her into the rehab again. I asked them why aren’t they putting her in a regular hospital room at least until the feeding tube is out. They said it’s no big deal.
I went home and last night called a doctor we know from Sloan Kettering in NY and explained the whole situation. He went across the hall to the neurology section in the hospital and explained it to his friends who were more knowlegeable in this area. They said they thought the hospital acted correctly as long as the disease stayed “typical”. At this point it sounded to them like the doctors were “dumping” the patient. Their advice was to get her into Columbia Hospital in NY which they said has the finest neurology dept in the area and they love to treat young people that aren’t suffereing from anything other than the disease.
I’ve run this by Brendan, Carolyn’s husband, and he said we should ask Carolyn since he thought she wouldn’t agree since the hospital is not local. I told him we want what’s best for our daughter and convenience doesn’t enter the picture. I told him I’ve lost faith in this hospital and the doctors here. My wife went to the hospital last night and Carolyn says she’ll think about it. Today we got the word she’s being moved to rehab and seems to be a little bit better.
So, that’s where we stand right now. Very frustrated and very scared.