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Aug. 10, 2009
A great birthday!
Noah had a really wonderful day today. We hit a rocky patch after I posted - he ended up with 2 trips to the treatment room. They needed to draw some labs from a vein and decided to put in a back-up IV while they were at it. It's a good thing, since it looks like that foot IV might be going.
Once we finished with all that unpleasantness, Noah had a great time with lots of visits and presents and cakes and fun. He did end up spiking a temp,:-( but his labs are looking much better since the line came out.
I spoke at length with one of his doctors this morning and we decided to try some g-tube feeds starting tonight. These are feeds of special baby formula that go through his g-tube directly into his stomach. The feeds will be delivered in a precisely metered dose via a pump similar to an IV pump. We are going to run them only for 10 hours so his gut has 14 hours to rest, and so he isn't hooked up to the pump during waking hours. We are going to start with 2 mls per hour for 10 hours. This is a miniscule amount of formula - less than 1/2 teaspoon per hour. If this works, we will slllooooowwwwllly increase the feeds - maybe 1 ml increase per day. If we could get to 60 mls per hour, that would be 1/2 of Noah's daily calorie requirement. We could cut the amount of TPN in half and decrease the running time so it only ran for 10 hours. Noah would only be hooked up to stuff when he was sleeping.
Honestly, 60 mls an hour is way over the miracle threshold. Before his major gut surgery 2 years ago, he could only tolerate 35 mls per hour. After the surgery he struggled at 17 mls per hour. We may get no where at all with this, but we won't know until we try. Starting g-tube feeds in a child like Noah should be done in the hospital and this seems like as good a time as any to try. If the feeds are still working when we go home, we will continue to increase on schedule until he reaches his limit. We'll stop if he is uncomfortable. When we hit his limit, we will have to decide if he is tolerating enough feeding to justify continuing, or if the amount is too small to bother with.
I truly don't anticipate any trouble with 2 mls per hour tonight. It's just 4 teaspoons total all night, and there is no reason he wouldn't be fine with that. Please just keep the whole process bathed in prayer. We will obviously keep updating on his progress.
NOW, I know I promised pictures. I've got the pictures, but I'm saving the picture post for tomorrow BECAUSE Jeff is getting a bunch of birthday VIDEO edited and uploaded!! When he finishes the videos, I'll do a birthday photo and video post. :-) I think the videos are worth waiting for!!
Off to snuggle and sleep with my BIG BOY!
Blessings,
Kate |
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Posted by Anonymous 
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Aug. 10, 2009 - Happy Birthday, Noah
Hope his infection clears soon, and that you will both be able to return home.
You are often in our prayers.