Saturday, October 27, 2007

Here is a new pic of me. down to 180.5lbs. I have lost a total of about 70lbs now. I look like a total cheese. Michele was doing something that made me laugh. If you look at my neck you can see the tape over my trache. It is gross but what ya gonna do. Talk to you later.

Home at last

Neal came home yesterday in the early afternoon for a couple hours, then we went to dialysis. He is feeling good and is happy to be home. The only thing they sent us home on was a different diet. No bread and he must thicken his liquids. We plan to take it easy most of the weekend.

Thursday, October 25, 2007

Home sweet home

Neal should be coming home tomorrow in the early afternoon. I am going to meet him at the hospital first thing to have a few therapy sessions and then the plan is to discharge him. He is very anxious to get home and I am very excited to have him back. We will have a follow up appointment with the neurologist in a couple of weeks. I am at home working on disinfecting and laundry. I am unsure I will sleep. I am so happy he agreed to stay one more day as recommended by the doctors. His speech does not appear to be bad at all, no where near what we originally thought. If you did not know him, you would not know the difference, I am not even sure I do. Almost three weeks ago they were telling me he would not have a tongue! His diet is going to be a challenge as he needs to stick to soft foods. I plan to grocery shop after I take him to dialysis tomorrow and cook for him this weekend. I think Neal is starting to realize exactly what he has been through. From what I can gather, he does not remember most of the hospital stay. We still do not know what happened, but doctors are telling us it was an isolated incident related to blood pressure and potentially meds. I actually had a neurologist call me back tonight at 8:30. I was completely shocked. At least someone in the medical world still has a heart.

Neal I hope you realize I am not encouraging you stay to make you miserable. I would prefer the doctors and myself feel comfortable with you coming home. I think we will be there within 24 hours. I want nothing more than for you to come home, however I do want you to be safe. It has been a long year and you have been through a lot. I want this to be the last thing before the transplant.

Wednesday, October 24, 2007

Getting ready to come home

I should be coming home tomorrow. I just have to do some pyhsical therapy. They are already impressed with how much i get around.

Catch you later

Tuesday, October 23, 2007


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.

Monday, October 22, 2007

Is anyone out there cause it's getting harder and harder to breathe...NOT

Today Neal had his trach covered up. It is still in if he needs it, but currently he is breathing on his own, with oxygen in his nose. He also passed the swallow test so he has started eating. He is anxious to get the feeding tube out, but I am unsure we are there yet.

I spoke with neurology and they are thinking seizure due to his medical condition. He was having bad headaches all week, was sleep deprived and had high blood pressure. I have asked for a repeat MRI and hope they will do this. There was some abnormality on his last MRI but they believe it was simply an indicator for high blood pressure.

Currently we are discussing physical and speech rehab options with social workers. I am unsure Neal will want this, but I think he should have it. His speech sounds pretty good given the circumstances.

Sunday, October 21, 2007

I See the Light

I think Neal calmed down a little bit this afternoon. Last night his nose tube came out again. This morning, he did not want it back it again, but he was told he needs his medicine and feeding, so he agreed to let them put it back in. After the tube was in, he calmed down. He can talk, but it is quiet and raspy. We still have not heard anything from neurology, so that is tomorrows goal. I explained to him a little more of what has happened. He knows he is missing a portion of his tongue, but it is no where near as bad as they first told me. Our first report was it may need to be cut off. Now I would say he is missing about a quarter of the right side by his molars. They are assuming he will talk normally and be able to eat. Tomorrow is his next swallow test, which I anticipate he will pass. Denise (Neal's sister) and Mom were able to see what progress he has made since last weekend, so I believe they are happy. I did not mention it, but the nurses thought Denise was his wife! Some of you know this, but when I first became interested in Neal I also confused Denise for his girlfriend! I pursued him and called his house and guess who answered....Denise!

Neal is now in room 1017 Doan, right off the elevators. Visitors are welcome, although you may find him asleep. Any updates are welcome as I am returning back to work full time tomorrow. I think Stacy is working on a dog plan for the week. Thanks to Joey and Kristen for supplying me with food for the week! Again I have to thank those that are helping out, it is much appreciated. Unfortunately it has been a long year. I am hoping Neal's 31st year of life will be completely different than the 30th and we can forget about all of this!

UPDATE: Neal is in dialysis today from 7:30 until around noon.