Wednesday, August 8, 2007

Just some more details that have been shared with other support forums (PAGER Trying to put the pieces together a bit because I never seem to have/make time to do the supper long post that this event seems to want. Ben is doing great! We had the surgery at U of M last Wednesday. Everything went smoothly for the surgery but it took 4 hours plus a little. He was pretty uncomfortable and confused in recovery saying break-your-heart things like "I want to feel all better" and "I want to be happy" but we made sure that he was comfortable and moved into his room. He learned the hard way the next morning that it was a bad idea to pull out your IV. That was our only bad experience but I think that it measures up as "pretty bad". You see, UofM has an IV team that works the main hospital and the children's hospital(Mott) so you have to wait for the team to make it's way to you for a new IV. We had a STAT order for a restart because he couldn't take anything orally and it took 4, yes 4 hours to get a new IV. That means that he was without pain meds and fluids for almost 6 hours! He was getting IV pain meds every 2-3 hours and was supposed to get Zofran during that time so he started retching just a little but it caused him enough pain that he was holding his breath because it hurt to breath so in turn his sats were in the toilet. It was a pretty brief (half hour) time that was BAD but I was still pretty hot about the whole thing. The rest of Bens recovery has been great! He came home Friday on soft foods and is now just stir crazy being trapped in the house. He is really picky so his choices of food are yogurt, milk, pureed fruits and veggies. That is all we have been able to get him to eat so we are eating supper high cal yogurt and getting pretty creative to add cals to the pureed stuff. We did not get a g-tube so we are doing our best to minimize weight loss. He has gained a ton of weight in the last 9 months (9 lbs.) so now is the best position we have been in to have some weight loss. It took him a year to gain 3lbs. and we jumped for joy when he hit 32lbs. at 3 and 10 months. Two weeks ago he was 41lbs and 43 1/2 tall. He had a GI bug that took 2 and now he has lost 2 more since surgery but he is still trucking along. This has been sooo much better than the pictures I had painted in my head because we have had very little retching and good pain control but this is still a really big deal. We are praying that it is all worth it to him in the long run. Time will tell.

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