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 knew this was coming. Honestly, I am almost relieved it is finally here. Jerry has been admitted into the hospital once again. He is down to a weight lower than when he left the hospital back in July. He is not eating, unless it is applesauce cups for the last 4 days now. His gastric emptying scan from a few weeks ago was normal so that has been ruled out.
The plan right now is to do a colonoscopy, endoscopy, and repeat the small bowel follow through to see if his SMAS has returned. We arrived after his GI appointment this afternoon and he is now again acquainted with his nemesis, the feeding tube. He received it like a champ, along with his IV. They are running the liquid Miralax through him to clean him out now and hopefully testing can begin tomorrow.
The colonoscopy was the one test never run so we are hoping to finally get some real answers. They stopped tests when they diagnosed the SMAS, but the bottom line is, the SMAS was just a result of the not eating. We never did figure out why he stopped eating in the first place. Praying the colonoscopy has some answers to that mystery for us.
If the colonoscopy is clear, well then we begin looking at whether or not this is a sensory issue or possibly ecen behavioral. I will be surprised though. He says everything he eats hurts and cries at the table in front of his food because he is hungry and wants to eat it, but says he just cannot.
So here we are again. This time, we left a sick cat and a brother with the flu at home. Michaela said she played a mom in her Peter Pan play so she can play one again at home while I am here at the hospital with Jerry. Blessed.
So I will explain the picture for this post soon, but first...
The scan. He was such a trooper! So we were called back into radiology at 9:30. After finding out his weight, they mixed up a batch of yummy radioisotopes...mmmm! It took them almost 40 minutes to prepare this stuff. They are basically little glow particles that can be seen under imaging (GI x-rays). They mixed these little guys in with a bowl of plain oatmeal, which Jerry normally will not touch. But considering he hadn't been allowed to eat since yesterday, he had no problem gulping it down in the allotted ten minutes. After that, no food or drink for 3 hours.
The first hour had to be spent on the x-ray table with his face six inches from a platform. He could not move and had to remain on his back with his arms at his side. Being the awesome mom I am (not), I forgot his ipad to distract him. So I held my rapidly dying phone next to his head and played Monster Jam videos for an hour. Served me right. He did amazingly well. Started to cry a few times, but some leg rubs helped keep the tears at bay. Try rubbing someone's leg and holding a cell phone for video viewing at the same time! That's talent people.
After that first hour, we spent the next hour sitting in the waiting room. I changed the TV in there to Disney, despite how other people there may have felt about that channel. I figured they wouldn't mind anyway once Jerry had a full-on meltdown in the middle of the floor from boredom and hunger. He never did thankfully.
After an hour in the waiting room, he had another x-ray lasting only one minute this time. Another hour in the waiting room and then one final x-ray.
This test was to see how quickly or slowly his stomach empties of food and whether or not an issue there could be causing his lack of appetite and upset stomach.
We did go to the GI again yesterday. Jerry gained 1 pound since last week and so the decision was made not to re-insert a feeding tube or re-hospitalize him. They did do a culture of his stools and stomach x-ray while we were there and will call with those results soon. The tummy scan results from today's test should be back by next week. Depending on all of those results, we'll know if a colonoscopy is in his future. Praying not, but also want answers no matter what they have to do.
So now onto the monster truck picture. If Jerry had to be hospitalized again, he would have missed Monster Jam this Saturday, only the second one he has missed in 10 years. And we have had our tickets for two months now. He has so been looking forward to it, carrying around a list of the trucks that will be there.
On the way home from the hospital today, as is the custom the week before the show, Stepps Towing hosted a truck and driver to take pictures with and sign autographs. It was a perfect homecoming from the hospital for him. Here he is with the crew chief of El Toro Loco. That's the guy that fixes the truck after the driver breaks it. Pretty cool job if you ask me.
God's grace, all God's grace.
Saw Dr. F today. Love him. He really didn't freak about Jerry having stopped all of his meds like I thought he would. Instead, he asked how he's been doing off of them. I told him that he had gold days every day last week, and that other than not sleeping great, he's been no worse behaviorally. Different, but not worse.
The sleeping has been weird though. He is just not tired and sitting up in bed playing until 11:30 or midnight. He wakes up several times in the night and then still gets up around 7:30-8 am. The difference from before is that the lack of and interrupted sleep does not seem to be affecting his mood or behavior during the next day. He acts like he had a normal night's sleep. So, not complaining.
Jerry's diastolic pressure was still low today, but his heart rate was 78. He encouraged us to keep pushing the salt as much as Jerry could tolerate it. Also said to sneak vitamins in too if we could. Thankfully, I have that odorless and tasteless supplement and probiotic for kids I got a while back to sprinkle on what he does eat. Dr. F also gave me a prescription for Ensure chocolate pudding since Jerry refuses to drink actual Ensure of any kind. We'll see about that too I guess.
The Atenolol for Jerry's BP made him moody and sleepy. The Midrodrine the cardiologist replaced it with, according to Dr. F, carries side effects of upsetting the stomach. Could explain for some of the loss of appetite and weight for Jerry, but he stopped taking all of his medications over a week ago now.
Monday Jerry goes for an EEG. By then, all traces of his Depakote for the seizures will be out of his system. If the EEG is clear, we will monitor him off the medications. If it comes back showing seizure activity, Dr. F will start him on Phenobarbital once a day, which he says will help with his sleep. Reading its other side effects though, I am not thrilled...nausea, headache, irritability, aggression, problems with memory or concentration, and a "hangover" effect. Lord, we don't need any of those!! The other option we discussed is medical marijuana, which he currently has several other patients on successfully. It will help control the seizures as well as increase his appetite. Sounds like a winner to me.
In the meantime, the GI doctor called to say that his blood enzymes were slightly elevated and his stool sample showed inflammation in his lower intestine. Crazy that you can tell that just by examining poop! Anyway, there is another stool sample test they want to run and they said they will collect the stool from him when he goes in for his follow-up this Wednesday. I didn't ask how they planned on collecting it since Jerry doesn't poop on command, but not gonna worry about it until then.
I'll update later in the week!
Let's play a game. It's called Things That Weigh 62 Pounds. You guess of things and I'll give you my list. We'll see how close you come to guessing right.
A Royalite Dumoine canoe is 16'4" and weighs 62 pounds. The average Italian eats about 62 pounds of pasta per year. The Sunpentown upright freezer weighs 62 pounds. The average 8-year-old weighs 62 pounds. 56 pounds of ice displaces 62 pounds of water. (Thank you Token Fat Guy blog for those random facts.) What else weighs 62 pounds? Better yet, who else? Yep, you guessed it...the only person who actually lost weight over the holidays...Jeremiah.
He had his GI follow-up appointment today and he is down from 70.6 to 62.6. Do the math and you know he has lost 8 pounds since he last saw the doctor. This is less than he ever got down to even in the hospital last summer.
We kind of figured. He's been looking scrawny and sickly again, his lips are chapped from dehydration, and his behavior and mood have been all over the place. He is also complaining of his stomach hurtingall the time. Actually, he says everything hurts. Today in the car he said, "Mom, my eyebrows hurt."
The doctor is doing blood and fecal tests tomorrow morning. She is also scheduling a gastric emptying scan to see if his stomach is maybe emptying too slowly, which would explain him never being hunrgy and saying he feels sick after he does eat. Dependng on what the fecal sample shows, a colonoscopy may be on the menu as well. Until then, he is to eat and drink as much as he can and wants. Unfortunately, that is not very often. That's the problem. It's not like we are starving the poor child. We offer him food all the time and even make emergency grocery store trips to get foods that he mentions he might want to eat. He speaks, we jump all the way to Publix.
He returns to the GI next Thursday. If he has not gained any weight, or has lost weight, he will be admitted back into the hospital and likely placed on a feeding tube again. She had no explanation for the possible gastric emptying issue and even suggested the SMAS was close to being an issue again. I told her how difficult the feeding tube was with sleeping and school, dragging the feeding pole up and down the stairs, and with it continually slipping out of place. She said if it gets to the point of needing another feeding tube, they will consider the semi-permanent kind they surgically put in his stomach. It is more discreet, easier to deal with, and can be left in much longer...until he is completely well again.
At the thought of another possible hospital stay, Jerry naturally burst into tears. He doesn't want to go back, but says he just can't eat. We just don't know what to do anymore. He says he's either not hungry or his stomach hurts. Praying for clear results from this new set of tests. We don't want old year problems in the new one!
To top things off, Jerry stopped all of his medications, including his seizure medications on New Year's Day. He flat out refuses to take them. He says they make him sick. We have tried bribing, threatening (following through on some of those threats), and begging...all to no avail. Dr. Foradada sees him this next Monday for a check-up to assess what may be going on. Praying he doesn't have a seizure before then.
Again, never a dull moment!
I am a Christian. I am a wife. I am a mom. I am an author. In that order.