Ched - Week 2

The docs keep telling me this is a marathon adventure. I need to pace myself, get rest, take breaks, talk with others outside of these four walls, etc. Man, are they right! What do you mean this is only the 2 week mark!?! I thought we must be much closer to 4 or even 5 as it seems like Ched and I have been here forever already. Ethan (my 8 yr old son) says he can't remember the sound of my voice...okay he is being melodramatic as we do talk on the phone, but still, I miss his sweet face and funny 3rd grade sense of humor. And I miss catching Gabe wear 12 pairs of underwear and 6 shirts at once (remember he has Down syndrome and obviously a unique sense of fashion)! I also miss my Pierre hugs and kisses as I accustomed to getting many each day. Also, talking about soccer and boys is more fun with Caitlin when we are both sitting in the same room!

Alas, after waking this morning and checking the calendar...it is only 2 weeks that have passed.

But, Chedner is doing okay and we are figuring out how to live with him lying flat in a bed, in traction, with pins in his hips and on serious medications. He is awake for a few periods on time each day. It seems like he sleeps most of the day one day and then the next he is awake for most of the day. Mostly he is calm and content to lie in bed watching Wiggles or another movie. He doesn't want to read many books, play with ANY toys, or talk on the phone to anyone. He does want to hold my hand, get lots of kisses and have his head rubbed. He is patient with all the docs and nurses who come by to poke and prod him each day. He already has favorite nurses and jabbers to them as they work at his bedside. The nurses really are great.

Dinner and a Movie...question: how many times can a grown person watch the wiggles before going completely insane???

While eating pizza on your back may be good in theory, it is very difficult. Especially when your hands aren't too coordinated due to sedation. This was the only nibble he managed but he did enjoy holding it for quite a while.

As the recovery progresses, the only troubles we are having at the moment are issues concerning his GI tract. His exstrophy surgery sites are healing well and his pin holes (where the bones are being held in position) are also doing well. Unfortunately, Ched has a miserable GI tract. Nothing seems to work right with it and the surgery plus being immobile is wreaking havoc. Top that off with morphine and other medications which slow down your gut and the result is a distended abdomen. His ostomy is working, but every time he eats, his belly gets big and hard. The urology docs decided to call the GI docs for help yesterday. I talked with a very nice fellow last night and he confirmed what we have been thinking (and our gastro doc at UVA was also thinking) that Chedner has chronic malabsorption and mobility issues. Even with the ostomy, the whole system just doesn't work correctly. Apparently, there is a continuum for these issues with Short Gut syndrome being at the worse end. Ched isn't all the way to that end, but he is close. Fortunately, he has been growing this past fall and therefore we know he is getting at least some benefit from the food that flies through his system. The sad part of this is the foods that Ched (and most 2 yr olds like to eat) are the very foods that are contributing to his problems. No more fruit juice for the boy...actually nothing with much sugar at all. Someone is gonna need to get me an approved food list as he said this is a life-long issue. Eventually as an adult, Chedner will figure out what foods make him sick and which foods don't. For the moment, that job falls to us. Considering the fact that the boy is a juice-a-holic, he will not be happy with this latest news. He will also need some additional meds to help things. I will find out more later today.

Well, that is the latest on Chedner "Fabulous" Fab. His docs tell me he is their new poster child for exstrophy as he is handling all of this remarkably well. His nurses have learned valuable lessons on the dangers of opening "over-full" ostomy bags. And I am once again amazed at the resilency of children to adapt to whatever comes their way.

Thanks for all your support and prayers!

Fran