Day 44

Michael got a hair cut AND he ate a full piece of bacon ON TOP of his feed of 55ml!!!

Grace had a piano recital today and she did really great! She has taken lessons for only a few months and is really enjoying it. Will post video soon...

Happy 17th birthday, Lexis Shea!!!

Day 43

Michael's staples were taken out this morning. The surgeon who did it was getting the tape and bandages off of his stomach and CUT the gtube tubing! They attempted to tape it up but it leaked. They attempted to glue it with something from the OR I don't recall the name of. It leaked. They turned off his feeds about 7pm and he is on IV fluids tonight. Looks like they will most likely replace the disc gtube he has in now with a regular plug tomorrow. This type was suppose to stay in while he healed for 8 weeks but that is no longer going to happen.
Also, his PIC line is no longer usable.
And he had to be cathed tonight because he hadn't peed in hours and hours. Not sure why that is but they will surely look into it.

*Carly flew in this evening and Noah and Grace came up to Salt Lake to stay! I am so glad to have her here!

17!!!!! and 12!!!!!

Birthday Party for Noah and Lexis at Boondocks tonight!

Noah graduated from 6th grade/Elementry school this morning!
He was also voted "Cutest Boy!!!"

Rock Canyon's Extravaganza

Day 42
Michael's CRP is down again today. It is at a 2.1. Infectious Disease dr's are considered with some of his numbers and the possibility that he is having a strong allergic reaction to one of the antibiotics. They have decided to change one to others (insert medical lingo here) both of which can be given thru his gtube rather than by IV. This is good news because the less things we are pumping thru his PIC line the better. It also means that there is a possibility we could go home without the need for the PIC.
They will be doing an extra blood draw to check his c
And lastly, they started him on 'drip feedings.' Basically putting 5ml of pediasure with fiber into his gtube every hour. It is an incredibly small amount but they want to take it very slow after all that has gone on down there. So far, he is tolerating it fine.
I spoke to Grace tonight and she was discouragingly bored. My sweet girl constantly needs to be challenged. This is the last week of school and it tends to be a waste of time. She wanted a project-- "something fun to do." Her nanny and I offered one idea after another until finally something sounded possible. Sweet pea needs her Mama home. I immediately fell asleep after our phone call and didn't stir until almost 10pm...

Day 41

Michael has had 2 poopy diapers. Very small amounts but poopy nonetheless. Something we have been watching for and while perhaps it is a funny thing to celebrate (although if you know Michael its always a good thing) it is a great sign.
After speaking with Mom she sent out another email update that I will attach here.

"I just got off the phone with Erica and finally, finally, she is feeling better about Michael's condition - in fact, we spent a while talking about Noah turning 12, it was great! They have taken him off of the morphine for the pain and now they're down to Oxycodone, which is still potent but not nearly what the morphine is. His bowels started moving today and even though they hoped for 3-4 days, he did that in 6 AND they ARE moving. It hurts him, but it's a good sign. The best thing is the infection level in his body is almost down to normal and he's never been so low since the first surgery 3 weeks ago. This is the best sign as it appears, tonight at least, that they are on top of the infection in his belly though he continues to have a very low grade fever. They will start a drip into his stomach to try to get him started on food tomorrow and they will start AGAIN to raise the amount and shorten the time it takes to give him the nourishment he needs to grow over the next few days. If they feel he has licked the infection in his stomach and he is getting enough nourishment from the G-tube in his stomach, they can go home! Now, that could be another week, but heck, its only a week! Tomorrow it will be SEVEN weeks! So, good news!
Love, Nancy"

Noah and I were able to go on a special Mommy/Son date tonight to celebrate his 12th birthday! We had such a nice time! First we went to Cabela's, a sporting goods store- which Noah informed me was the largest one in the world. I gave him a gift certificate to there and he knew immediately he wanted to buy a new airsoft gun. He took a great deal of time looking at each and every option. He had very specific features in mind. We finally found one that he liked and he was thrilled. Together we walked through the 'big game' displays, used up lots and lots of tokens playing the shooting game, taste-tested fudge- where he insisted I make our final selection, played Wii hunting games, fed the giant koi what appeared to be cat food for a quarter a handful...at one point he danced around not wanting to stop to go use the bathroom he was having such a nice time. We both were. After purchasing his gun, of which he was wonderfully grateful for, we went to Rodizio Grill. We both got quite full, quite fast but Noah's favorite by far was the grilled pineapple they brought around on the giant skewers. He was given a birthday 'flan.' He said thank you and then immediately turned to me to ask, "what is that?" He is such a joy to hang out with. He talks and talks. He is polite and gracious and so nice to be around. I am so proud of him! I love you, Noah Douglas! Happy 12th Birthday to the the most awesome son a mother could ask for!

P.S. The hat is Lexis' present to Noah!!

Lexis has designed, chosen fabric and now completely sewn her Prom dress! It is beautiful!!

May 21, 2010
I called the kids to see how school went and Grace answers. She tells me that she got Noah a birthday gift. "He opened it this morning" she says. I ask what she got him and this begins...

"well, I went into his room and found his deoderant. It was hard to find. Then I wrapped it all up. I told him he could open my present first. I wrote a note that told him 'small children in Haiti and Africa are dying because of some strange odor.' He didn't love it. "

May 21, 2010
Day 39
Today is Noah's 12th Birthday! We wish so much that we were not in the hospital in Salt Lake! I spoke with him this morning and he was excited for the day!

Michael's PCA dosages are being raised. Also, the surgeons have decided he can get his regular home meds thru his g-tube again. Already he is starting to calm. Being able to rest comfortably is exactly what he needs to heal from this last intrusion on his tiny body.

Today was the kids' Field Day at school. Grace ran in the track competitions. In the 400 yard dash a group of three would race when signaled. Once they were a certain distance the next group would begin. Grace told me proudly that not only did she come in first in her group but she passed up two of three kids on the group just ahead of her!! Awesome Job Grace!

Happy 12th Birthday, Noah!!!
You are The Best and we are si blessed to have you in our family!

Flynn the Great flew in this afternoon! I woke up in the PICU waiting room to find a handful of messages including one that said he'd be in SLC at 4pm. I raised to the airport to pick him up. How wonderful it was of him to just come! We laughed the whole way back to the hospital. He's just what I needed

Day 36
May 18, 2010
Michael is just out of surgery after over 3 hours and is being stabilized in the PICU. His surgery went much longer than anticipated as they found it to be worse once he had been opened up. They had to remove a portion of his intestine that had been taken over by scar tissue (adhesions) and remove all adhesions. They also found multiple absesses that were hiding/ surrounded by these adhesions and these were drained. They cleaned all of his insides out again good, gave him a blood transfusion and removed his appendix which was also enmassed. His incision is now twice the size and stapled closed. He is sleeping restlessly but being watched over carefully.

Day 35
Michael had an extremely rough night. He is wretching and it rocks his whole body as there is nothing left in his tummy to throw up. They have him hooked up to all the monitors again and his heart rate has been quite high.

They brought in this "Vecta machine" when I complained he had no toys...most of it is based on sight but he did like the squishy ball.

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.