Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
We went back to our old stomping grounds this week...St. Joseph's Hospital. Tuesday they replaced Jerry's feeding tube. Because it's an NJ tube and needed to be guided under x-ray to ensure proper placement in his small intestine, he had to be sedated. He was not a happy camper about this and mad at me for not warning him beforehand. Two IV attempts later, they finally had him ready for x-ray. They put some barium in his IV to light the way to his small intestine and then gave him some sleepy drugs...good stuff and totally underestimated. Unfortunately, Jerry woke up before the end of the procedure and, in his confusion about where he was and who all the strange people around him were, he jerked his arm back and yanked his IV right out. They attempted to put another one in to give him more sedation and finish the tube placement, but he was having none of that. No more needles for him. So they just worked quickly to finish while he was fully waking up.
Glad they replaced the tube. The end was so stretched out from where the feed bag was inserted time and again, that it leaked constantly....formula and gastric juices. Yum.
This all earned him about 6 stickers and two tokens to the treasure box before we left. Then straight to Burger King because it was now 17 hours since he had last eaten or had anything to drink. Trying to put weight on him. Fasting defeats that purpose. And speaking of weight, the scale at the hospital, which is the same one the doctor's office has, showed 0 weight gain since he saw the gastroenterologist a few weeks ago. Gggrrrrrrr!
Today we came back to the hospital for a small bowel follow through. This is the test they did as an inpatient that diagnosed the SMA Syndrome to begin with. Basically, they fill Jerry with barium and then take x-rays at intervals to monitor his digestion. The mesenteric artery was obstructing his small intestine opening so completely the first time we did this test that the radiologist had to roll Jerry on his side and put pressure on his stomach to try and aide some of the barium passing into the small intestine so the test could even be completed.
The first small bowl follow through, they were able to put the barium directly into his feeding tube because, at the time (pre-diagnosis), the tube was in his stomach. Today, with the tube bypassing his stomach, he had to drink the majority of the barium to complete the test. He was a real trooper. They tried flavoring the barium to get it down easier. Strawberry first. That was a negative! Next was chocolate. Let's face it, chocolate makes everything better. Though I am pretty sure flavored chalk water is no better than unflavored.
It is very cool to watch on the monitor though. Here is the first picture after his initial few sips of the barium. You can see the white contrast liquid in his stomach on the right. You can even see his tube. Way cool.
Here's a picture after his stomach is full of the barium. John joked with Jerry that it looked like Jerry Jr. They laughed trying to point out the head and feet and wondering if it's a boy or a girl. Yeah. Hoping Jerry doesn't go to school tomorrow and tell his teacher he is pregnant!
We'll get the results of this test on September 26th when we go back to the GI. Overall, he seems to be suffering from nausea less and eating more...though his diet consists almost entirely of pizza rolls these days. He talks about food constantly and is always thinking about his next meal...typical Jerry. Hopefully soon his stomach will catch up with his brain.
We were better prepared today for our length of stay and I downloaded several movies onto Jerry's iPad so he'd have something to pass the time more quickly. Getting the hang of this hospital life stuff. Not sure if that's good or bad.
On a more positive note, John was told to work from home today because of the impending tropical storm and school was canceled for Jerry so he didn't end up missing two days of school this week. Which by the way, he has been in school ten days so far this academic year and had nine gold days and one silver. Go Jerry!!!
I am a Christian. I am a wife. I am a mom. I am an author. In that order.