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
3/4 of a pound. I can eat 3/4 of a pound of Oreos...or chocolate cake...or pizza. And if I did, I would gain 3.4 pounds, or maybe 34 pounds if I made it a habit to eat that way. But not Jerry. Jerry can eat an entire can of Spaghetti O's, a bagel with strawberry cream cheese, and a macaroni and cheese bowl...for breakfast - and he gains only 3/4 of a pound! Oh if only I could isolate that child's metabolism structure, bottle it, and market it. I'd be able to afford to eat 3/4 of a pound of every delicacy I delight in.
Yesterday was Jerry's GI appointment, the first one since his tube was removed. It was slow going at first. While he definitely ate more with the absence of an obstruction going down the back of his throat, he still had to be careful not to overdo it for fear that the waves of nausea would present themselves again. But then something happened in the last week and a half and that boy has been making up for lost time ever since! He is eating non-stop. As I type this, he is eating a chicken pot pie - before school.
The doctor was not concerned with his lack of weight gain because, while it was only minuscule, 3/4 of a pound is still 3/4 of a pound. We'll take it! Ideally, she would like to see him at 78 pounds. Coincidentally, I would like to see me at 78 pounds too! So that is our new goal for him. We go back in two months to see where he is at and have to call them immediately if the nausea and/or vomiting return.
On another note, we donated his unopened and leftover feeding tube bags to the doctor's office so that they could gift them to a family whose insurance maybe doesn't cover the at-home feeding supplies. The 9 cases of leftover Pediasure baby formula went to the Women's Resource Center in Brandon to bless some new momma and her wee one. God is good...how He can take something that was a burden and tribulation from one family and use it to bless another. Typical. And I don't believe it was a coincidence or random chance that those things in those quantities were left over either. They will be the perfect amount for who and what God has in mind for them. It's called grace.
Hmmmm.....what's different about this picture? Ooohh, I know, I know! There's no more feeding tube! Hallelujah!
It all started this past weekend when Jeremiah managed to lengthen the amount of tubing outside of his body to just above his bum. We were coiling it up to his collar and taping it there to keep it from getting snagged on things and pulling out any further. I called the doctor yesterday, explained what was happening, and she got us in today for an appointment to manipulate the tube back down further into his stomach.
According to his small bowel follow-through last Thursday, the tube had already dislodged from the opening to his small intestine and was already sitting in his stomach. But because he was tolerating the formula well going into his stomach and not feeling or getting sick, they didn't worry about its placement.
Well, the reason the tube slipped out is likely because the mesenteric artery was no longer clamping down on the small intestine opening to hold the tube in place. That's right! The SMA syndrome is finally beginning to correct itself according to last week's test results. Again, hallelujah!
So the doctor decided today to simply pull his tube and see how he does! Big sister Michaela went along to hold his hand and encourage him to be brave.
We are not yet out of the woods. We still have to go back in two weeks and he needs to have gained weight by then. Today he weighed exactly what he did when he was discharged from the hospital...70 pounds. Keep in mind though, that while he is not eating as much as he used to, Jerry is still as active as he ever was. He has been walking with John and I two miles each evening just because he likes going on walks! Add to that his already high metabolism and family genes (Have you met his dad?) and, well, let's just say that Jerry will never be a gladiator.
So for the next two weeks, he eats, continues the DuoCal, keeps taking the Azithromycin which aids digestion in emptying his stomach, and did I mention...HE EATS! That's key. If he does not put anymore weight on, they will start him on Periactin, an appetite stimulant, which I would rather they did not have to do.
For now, we are celebrating this HUGE step. After 61 days, he is tube-free, we get to sleep through the night, and the home health company is scheduled to pick up his pump, pole, and backpack sometime in the next few days.
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.