May 14, 2010
Grace-ism

"my Mom says I can't say he's ugly and so I just say I have negative feelings about the way he looks." -Grace

Mother's Day 2010

All my kids together, Mom in town, breakfast in the Hospital Cafeteria, hanging out in Michael's hospital room TOGETHER and a super yummy dinner at the Melting Pot made for a very nice Mother's Day!!

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

Back home with kids and Aunt Carly! Double goodness!!

Lexis and date, Nate, for Prom. full story to come...

Day 45

Hard day! They increaed Michael's feeds by 5's and he couldn't tolerate it. He became incredibly agitated.
I am exhausted and spent the day on high alert wrestling with him to keep him safe and/or comfortable. I lost my patience while attempting to do his wound dressing change. It was impossible for me to do without two extra nurses, the music therapist attempting to keep him calm and a dose of atavin. How I will do this at home by myself is a daunting thought. One that brought me tears today and I van usually keep it together. More than likely this was this casebecause during rounds this morning Dr's talked about sending him home tomorrow. They are assuming that he will be at their self-proclaimed goal of 60 ml each hour by Friday. This would mean that he would be hooked up to a pump every hour of the day. A pump that has long tubing that is then connected to his gtube in his stomach. 60ml would constitute Michael being 'hydrated' as the dr's explained. It would not however be 'ideal for nutrition nor weight gain' as well as a normal life schedule outside of
the hospital.

I talked to Noah on the phone tonight and he reminded me that I was suppose to call him after school re: his graduation program tomorrow and I hadn't. (My phone was not working and I needed to goto the apple store.). He let me know his 6th Grade Graduation is tomorrow at 9:30am. My heart sunk as I realized how terribly difficult itwouldbe for me to be there. He said "please come!" and it was decided. It took all I had to mask the sob escaping my throat as I assured him I would be there.
This has affected our family.

Day 17
April 28, 2010
Dr.Downey and team of dr's all came in to check Michael's gtube. He was incredibly pompous as I asked questions and expressed my concerns about the gtube. He kept telling me that he thinks "we are really just overthinking this!" I told him that I could feel that he was frustrated by my determined concern but that I really felt like something is wrong and that I wanted to have my concerns addressed. He wants the gtube left alone and practically laughed out loud, basically rolling his eyes with the younger man that came in with him as I expressed my concern again and again.

Lexis is running for Student Body Secretary. Last year she ran for Junior Class President and after a great fight she lost to the Brad Pitt of Timpview High. I was so proud that's she chose to get right back in their this year. She is such an outstanding young lady!! We finally decided on a "Supergirl" themed campaign. We painted posters last night and Taryn's dad's friend is putting Lexis' face on supegirl from a 1980's movie. Her campaign slogans all center around that-- "it's a T-Bird, it's a plane. No, it's Super Secretary Lexis Allen!!" "Vote Lexis for SB Secretary. Saving lives one T-Bird at a time!". I took two Costco boxes full of Blow Pops to the hospital and sat next to Michael's bedside putting "Vote for Lexis" on each one and Michael only nawwed on one that was already half open.

Day 14
April 27,2010

Michael could not tolerate the 200ml over an hour and I am completely distraught. I don't understand how we will be able to manage normalcy at home if he is attached to this pump 24 hours a day. Dr Sadie handed me a calculator and said I am mowing charge of his feeding schedule. Michael needs 1680 each day and however best we can get that in him with consideration to his comfort and schedule is what we should do. I like the idea and am busy coming up with a schedule.
As a side note he has a fever today?

Day 14 April 27, 2010



Sent from my iPhone

Day 14
April 27, 2010

Tina came by to change Michael's gtube dressing. We explained our sincere concerns about his obvious belly pain. Once the bandages were off I noticed a strange hard area to the left of the gtube. It actually felt like a piece of something. My guess was a piece of the mechanics they put inside of him but she reassured me that was not possible although she was equally concerned with the site. He took a picture of it to show the surgeon and the redness around it. When he flexes is stomach muscles a circle appears around the site which looks like the balloon that is holding that in. That is my best explanation. I told her of
my concerns that something just doesn't seem right. I sit next to him in bed for hours of the day trying to keep him from hurting himself and I just feel like something is going on with his tummy.
Dr.Meyers, another surgeon, came in later and expressed her opinion that it was very unlikely that anything was happening and that they woul continue to let his gtube rest the full week before using it.

Sent from my iPhone

April 27, 2010
Michael only weighs 17.6 kg at 112 cm -- having lost weight since he was hospitalized.
I was able to go into work today. It is a terribly busy time as everyone is Checking in and out with school's end. My job has taken a most unfortunate back seat to Mike's. I have the luxury of setting my own hours but that does not compute to a lower need for me to be there.
He became furious with me after Drs suggested the possibility of a half-way house type scenario while Michael's feeding issues were controlled. A sort of step down from the hospital setting. I had mentioned to the dr's my strong concerns of taking Michael home right away and trying to do this on my own. I am unsure why this caused him to be so angry but my guess is it stemmed fromhis belief that such an admission or need for support constituted a lack of ability on our part as parents.
A representative of the South Davis facility came by and talked with him while I was at work. I read report and I am unsure as to whether she wasn't understanding Michael's story or if Mike wasn't clear. Interestingly enough Mike us now complelty on board with the South Davis option. Is this becaus the young lady was so cute? I am unsure. What a fical creature.

Day 13

Dr Fassl and team listened to our concerns about the feedings but don't seem to be as concerned about his agitation after each feed as we are. I feel
Very strongly that something is not right with his tummy if nothing else his behaviors of throwing up whatever is put in his stomach along with the obvious discomfort when be eats are still present. These are reasons we were admitted in the first place. They are saying we Could go home as early as tomorrow and I am wondering what the heck I am missing here. Michael has been as aggressive as he has ever been. He is clenching his stomach and gassy and frankly miserable with each feed. I am having to restain him while sitting in bed with him and he has bit my upper arm multiple times in basically the same spot. I have an ice pack on it now. I was complelty unable to keep my compusure while meeting with dr's this morning as they told me they felt good about how he is doing. I am overwhelmed by the idea of trying to manage this at home by myself not to mention the fact that it has taken four nurses along with myself And meds to hold him down while placing
his NG tube. I don't understand how they can feel so visibly different about what is happening. DrSadie did become teary eyed as I cried my concerns. We are lucky to have such a good team following Michael and there help is still needed.

Day 12
April 25, 2010

They are feeding him thru his NG tube and he can't hardly stand it. He's gotten more and more agitated and threw up yesterday. They are feeding him large "bolus" feeds every few hours and I am not sure why they have started out with what seems so aggressive. The feeding are of Pediasure that is poured into a bag, attached to a pump and dripped into his tube down thru his nose and then to his stomach. He definitely could use the feedings. He only weighs 18.3 kg or 40 lbs. So tiny!