Fighter

Neal is a fiighter and everyday he is irritated, I try to remind him of this. He is anxious to get out, but I keep telling him we are not quite there, but so close. I hope he can hang in there a couple of days. I want to ensure when he gets out, that will be his last visit until the transplant. Today was the first time Neal had called me in 18 days. You do not know how happy I was. I was so overcome with emotion.

Today was a big day. Neal had a repeat MRI and it looked better than the last. I feel much better now that this happened. I had to poke and prod a lot to get it, but they finally did it. I do not want to see Neal go through any of this ever again and now I am at a little more peace. He has also been in the hospital 18 days and no repeat seizures. I do believe the conditions of that day lead to this. I have asked that when Neal come home he monitors his blood pressure on a more regular basis, may not help, but does not hurt.

Neal was pretty agitated when I arrived at the hospital tonight. He had requested dialysis be stopped a little early. I do not believe this is a big issue since he got it yesterday and will get it tomorrow. He also requested to have his feeding tube removed. He has had two days now that he could eat, therefore he would prefer to remove it and be more comfortable. The doctor came and advised against it, however Neal disagreed and pulled it out as the doctor turned to convince me. I told the doc it was too late. Neal did not eat much for dinner, so hopefully he will have a good breakfast. The frost train may begin tomorrow as well.

Next ear, nose and throat came in to remove his trach. The did a scope up and down his throat and down his nose to check the swelling and everything looked good. The trach came out pretty quickly and is held shut by tape for a couple of weeks. He is talking pretty good now (with pressure to his throat), although I am unsure how much his speech is impaired by his tongue being partially bitten off. It is no where near as bad as the doctors first told me. I do not believe anyone just meeting Neal would have a clue if we would not tell them. He bit on his tongue by his back right molars. My initial impression is he will be just fine and his speech will not be impaired at all. He is still on oxygen, but I would guess he will be off once he adjusts to breathing without the trach. There is not much follow up unless he would like some cosmetic surgery on his tongue. At this point I do not think he will do anything. It is so far back, no one will know but him. That is quite a relief considering 10 days ago I was presented with the possibility that his tongue would be cut off. I know compared to what he has been through it was not a big deal, but all I could think of was how this would affect him every day of his life forever. Unfortunately he will have a scar to remind us of this nightmare (termed by my mother and so true).

Next on the list, controlling his pain medicine. He is still getting quite a bit. Between that and all that has happened I am a little uncomfortable with him coming home and am hoping he will agree to a rehab facility for a week or so. I do not feel as though I can take care of him and would prefer if someone was around for a little bit longer and if he had someone ensuring he was able to eat for a week and swallow his pills. I will be contacting the team that is seeing him first thing in the morning regarding this. Currently Neal is opposed to rehab. I really do not believe he needs as much as I originally anticipated (speech wise), however having 24/7 care will allow me to sleep at night. It has been a long month, but everyday I feel more comfortable with the fact the Neal will be coming home unsupervised. I am sure my phone calls and text messages will drive him crazy, but for my own sanity, I will need to know he is safe if he is alone.

WEDNESDAY - Neal is in dialysis this morning probably until noon or one.

UPDATE - Neal has agreed to a little rehab. He will be transported to Dodd today. Everyone I have talked to regarding Dodd has said it is an excellent program. They recommend a two week stay, but told him if he works hard he can go home much sooner, maybe even this weekend.