May 9, 2010 Mom has come into town to help out and i have appreciated it. She sent out the following email out to family. Her observtions of things may be somewhat different than mine but nevertheless here it is...

Hello All! I thought I'd send this little update as I haven't had a chance to email 1since I came a couple days ago.

Michael is doing better today. It's been a little touch and go since I got here. The infection in his belly was really a serious concern and they had to watch him really closely to not let that get out of hand. Yesterday they removed the tube from his nose that was pumping his stomach because his digestive system isn't working and anything in it makes him throw up. He looks better without that tube, that's for sure! He pooped TWICE this morning, which means his intestines are working again, for the first time since the surgery over a week ago. They put a cathetor in because he would NOT pee and his bladder was so, so huge (they did a CAT scan looking for pockets of infection and found his giant bladder but did see lots of infection pretty much covering his organs but no pockets that then needed to remove). They need to get that out today because it could be a source of infection if it stays in too long and infection is what he is fighting right now. There was still, yesterday, infection in his belly but his fever is gone - that left last night, so we are thinking he may be getting ahead of that. They are hoping to feed him something today to see if he will keep it down but they have a new Gtube directly into his stomach to feed him if that doesn't work. He only weighs 34 pounds and he's skinny, skinny. When they put that tube in last Friday (a week ago) they had given Erica feeding schedule for when he got home. He has to be hooked up to the bag of liquid for an hour at 7:30, 11:30, 3:30 and 6:30 then all night to get enough nutrients inside him. She said she can feed him before school, they are trained to feed him at school then when he gets home but school is out in 3 weeks - I think 2 weeks for him. He will be here at least another 5 days to be sure he's kicked this infection and to be sure he can tolerate the G tube because that's why he was here in the first place - he would throw everything up that he ate and they admitted him for 'failing to thrive' or starving to death. That, I don't believe, has changed and I think Erica has already said that they have determined that was his choice so the G tube is critical for him. I'm not sure how they plan to keep him hooked up to the feeding apparatus all that time, every day, but that is the next challenge. We'll see how she manages with him at home with this new responsibility.

I picked up Noah and Grace at school about 1:30 on Friday and have had them ever since. We've had a really fun time and Mike comes up after work so Erica can get away with us or I stay with Michael while Erica hangs out with the kids. Lexis drove up this morning (Sunday) and they are all here at the hospital now (I came earlier and relieved Mike so he could go back to work in Provo) and they are all down in the hospital cafeteria having Mother's Day Brunch. Lexis will drive the kids home later today and they'll be back in school tomorrow and I fly home tomorrow night.

It's been really good to be here to see how all this works. Neither Mike nor Erica leave Michael alone for a minute. He really is so terrifically unpredictable, if you think he is okay and leave for some food or something, he can turn on a dime and start tearing things out or off or whatever. I don't know if that is the nurse's job or what but they just feel more comfortable being here themselves and find leaving almost impossible - even Mike. I have also discovered Mike is just as protective of him and gets really, really angry and defensive if there is ANY sense that they can't care for him by themselves. I can see this is not only Erica determining that he will remain totally in their care...

The halfway house she mentioned is really for kids who can actually walk or entertain themselves or be on their own, though there are staff people always there. It is absolutely NOT set up for someone like Michael who absolutely needs someone by his side 24 hours a day. This has become even more obvious to me while I'm here. He is on some really strong meds that keep him sedated so he will heal but if he is not on something like that, he would need to be restrained at all times. He seems happiest when he is wrapped up tightly like a mummy with music playing near his head and everything else extremely quiet. It seems his limbs loose give him cause to flail and he is totally out of sorts. His poor little ears are torn and bloody because he can bang on them when his arms get free - even though he has his 'no no's' on, which are like portable casts that run down his arms above and below his elbows so he can't bend them. If he can't get at them with his arms, he will gladly use his feet, he's amazingly flexible!

SO - another week for them in the hospital and then one more week of school - if he can even go back this year, he may not be well enough, especially if they are nervous about other infections. Then summer starts and he will be home full time, which is where Erica and Mike will really have to make some decisions as to what to do with him all day every day so they can both do their jobs. We'll see but I feel that they care for him so much if I just let them figure it out, they'll be fine.

Lex may have lost the election but she was appointed to Student Council, which she is very excited about. She looks great! Noah won his quarter-final soccer game yesterday 8-2 and has the semi-finals on Weds. He plays defense and their goalie just sits on the goal bars most of the time, which means he's doing a great job. Grace spent yesterday with me here in the hospital while Erica took Noah to Provo to the soccer game and she told me all about her science project and the boy she likes, etc. She's still a total joy to hang out with - as they all are! So fun to see them. Mike is here a lot but Erica's a little miffed that he puts his job first. Actually, he ends up spending most nights here, thinking he is going home while Erica sleeps here, but stays if Michael is struggling, which he's been doing the past 3 nights (except last night but Erica spent the night in the hotel with us). So, he's been a couple hours late to work but they are good about giving him the time off because of the situation. He is very, very appreciative of me and I'm not sure if I'm not seeing him not at his best (whoa, did you get all those negatives?) but he obviously tries to be here as much as he possibly can. Erica seems good, though understandably on edge when something's not quite right with Michael - like right now, when he is sleeping so soundly (it's 12:30 in the afternoon) that we can't wake him up. That's weird. His vital signs are good but this is just not normal. Unfortunately what is normal is him fighting hard against you and you trying to protect yourself from some good, solid hits or bites! They changed his bed today while I was the only one here and I held him while they did it. I just kept him in my lap for an hour because I've never held Michael before when I wasn't terrified he was going to lash out in some way. He was so calm and even fell asleep! Tough.

I thought I'd just keep you all caught up and I'll write more later! Love, Nancy