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May 7, 2003
**5.7.04 update
After last week, this week has been a piece of cake! I have been able to get caught up on life in general, which is like a burden lifted from my shoulders. I still have tons of things to do, but not screaming at me! :)
Sean seems to be doing well. He was tired this week, but with rest, his energy returned this morning with a venegence! I was beginning to worry.
Today my hubby took the boys camping. Sean has been waiting all year for this weekend! He loves to camp and be away from all medical things. He gets to be off the pump for tonight, but Ken will do a bolus feeding before bedtime and after each meal. A bolus feeding is when he gets about 60ml at one time instead of dripping that same amount over an hour each hour for 12 hours. He still has to take the meds, but he is fine with that.
The Prevacid is really working and Sean will take it now without spitting it out. It is a pain to mix, but if it works, it is worth it.
Sean's surgeon notified us this week of the procedure he felt Sean would mostly likely to benefit from. Still it is a gamble, but something needs to be done to help get the food down. They are going to try to create more esophagus out of his stomach for him. He will be in the hospital for a week to make sure he is doing okay. We have to see how he tolerates eating by mouth and feeding tube. IF he doesn't, they will take his colon and replace his esophagus with it. Funtimes!
Well, I am out of here. I have zero boys hanging off of me and a house that needs cleaning!
later!
Shelly
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