Our Quiverfull - Update from Kate

Sep. 22, 2007

Update from Kate

Boy, have I missed updating! I don't know how long Noah will stay distracted, but I have a lot of news so I will try to keep it simple.

First, Noah once again has an infection in his blood stream - probably staff, but we will know more later. He is back on heavy-hitting antibiotics and is feeling and looking very sick. We don't yet know if this is another antibiotic sensitive bug or if it is resistant. This is a serious matter. Every little thing that happens to him keeps taking a bigger toll because he just doesn't have any reserves left and is pretty weak.

Noah had a g-j tube conversion yesterday which didn't go as well as the doctors had hoped. They had to use a much smaller tube than they wanted (greater chance of clogging) and couldn't go in as far as they wanted (greater risk of the tube backing up). Their difficulties were due to Noah's abnormal anatomy. He also had his brain MRI. He got highly agitated during the tube conversion and required the absolute maximum of sedating drugs he could have, so it took him a very long time to come out of sedation.

Last night the doctor started a slow feeding drip into the j part of his new tube. Noah had an extreme reaction and was very sick all night. His face stayed contorted with pain and he couldn't stop rolling and thrashing back and forth. He also vomitted on and off all night. First the doctor stopped his feeding for an hour, then stopped them altogether, but Noah couldn't settle down until 5:30 this morning. I don't think I have ever seen him suffer so much and for so long. Nothing anyone did would comfort him as he cried and gasped and clutched his belly as he rolled around. Every so often he would collapse and fall into an uneasy sleep for a few minutes, then he would start right back up again.

X-rays taken first thing this morning showed that his new tube was already starting to back up toward his stomach, so he was taken off immediately to have it put back in place. He will start receiving feedings through it tomorrow. I believe an x-ray will be taken to confirm placement of the tube first, so that if he doesn't tolerate the feedings we will know that it is because he can't handle feedings directly into his small intestine, not because of a placement issue. If he CAN tolerate the feedings, but the tube won't stay in place (unlikely for it to stay in place long due to his history and anatomy), then a surgically placed j-tube may be the next step. This isn't a great option for Noah because it always carries the risk that the small intestine will twist around the tube. Noah's unusual anatomy puts him at a higher risk for that sort of problem, which is a serious medical emergency. If he CAN'T tolerate the j-tube feedings, then we are probably back to a very small amount of feeding through his g-tube plus continued TPN. This isn't a great option because the TPN will destroy his liver. There are no other real options right now. Please pray for some sort of good resolution because Noah seems to be stuck between a rock and a hard place right now. He can't live without nutrition, but every attempt to provide him with nutrition carries a major risk of one sort or another. You don't know what I would give to just hand my little guy a PB&J and a cup of apple juice!

Noah has seen a lot of specialists and has had a lot of testing. There are more tests in the works and I will try to fill you in on those later.

Now it is my turn to post a video of a song that is very special to me. This is a band called "Big Daddy Weave" and I have actually met these men because they used to lead the worship service at my dad's church in Florida before they started touring. I really hope that you will listen closely to the words because I agree so much with everything they say. When I listen to this song, it is as if they are singing the words that describe how I feel. I hope it is as much of a blessing to you as it is to me.

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Sep. 22, 2007 - Untitled Comment

Posted by Anonymous

Praying once again for doctors discernment, healing for the infection, a fitfull sleep for both of you and a way to nourish Noah without hurting him.

Becky (shs)