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
It has been 21 days since we started this journey at St. Joseph's hospital. We have been home for a full week now. Life is a lot like it was when we had a baby. We get up every four hours to refill Jerry's bag with baby formula and reset his feeding pump. It's funny really. I have four teenagers and have had six babies in total and never once has there been formula in my fridge until now!
We saw the pediatrician Tuesday. The hospital told us to follow up with him. I love our pediatrician. He is awesome. He had yet to receive the hospital's report of Jerry's stay there though and so was quite surprised by the sight of him with his new backpack apparatus and feeding tube. I explained to him as best I could the events of the last few months and weeks. His response?
"This is out of my realm. I have no advice for you. I have a general pediatrics degree and am not trained to deal with advance gastrointestinal diseases like this. I have seen less than 5 kids with SMA Syndrome in my 25 years of practicing and it was always on the front end when they were in extreme abdominal pain and I referred them to the hospital."
That was a tad discouraging, but it was a little revealing. So Jerry was in pain all that time and just didn't tell us, which is typical of him. The pain, hunger, nausea, and just feeling crummy might explain some of his behavior of the last few months leading up to his diagnosis. That's encouraging because maybe it means we will see better behavior once his physical issues are resolved.
He was due for a booster shot before heading back to school this year, but the pediatrician agreed with me that it could wait as he had enough going on right now and had been through enough trauma and needles over the last few weeks. Again, love my pediatrician.
It's been a delicate balancing of trying to get him out and about and doing things he normally does...all the while trying not to let him burn too many calories.
We have been playing lots of board games and then there are the crafts...so many of them that we had to hang a line in the hallway to display them all. And there are more on the bookshelves!
Wednesday we saw the GI we saw inpatient. Jerry had some nausea Monday, Tuesday, and Wednesday this last week so she ordered an x-ray to make sure that his NJ tube was still in the proper position. Her office called today to say that it was and that we could turn his feeding pump off for four hours once a day to see if he gets hungry and then try and feed him solid food to see how his stomach tolerates it and whether or not the food can pass unobstructed to his small intestine now.
Jerry was very happy to hear this of course, as he has finally been saying he is hungry more and more over the last few days. We make broth for him constantly it seems. And he doesn't like the broth in the containers that are used for making soups. He likes the broth found in cans of chicken noodle soup. So we have been straining out the noodles and chicken, watering it down, and that's what he has been eating.
Today I made him some cheese toast on regular sandwich bread with no butter and light on the cheese. I cut it into four squares and he ate one and a half of them before saying he was full. Like a bird, but at least he ate something. So far, so good. He is napping now, but has kept it down. So, after 21 days of either no food or broth and popsicles, he is beginning to eat again. Praise God. Baby steps.
Next stop, feeding tube out hopefully. Jerry goes back to school on August 17th and his follow-up with the GI is on the 15th. It's cutting it close, but it would be so nice to send him to school with just a backpack full of school supplies and not an additional one with his feeding pump in it.
We got home Thursday evening around 7. It was great to be home, but a little scary and overwhelming too, knowing now that we were on our own with feeding tubes, flushing lines, and mixing formula. That's pretty funny actually. I've had four babies of my own and there has never been baby formula in my fridge until now when I have four teenagers!
We were pretty exhausted and just lounged most of yesterday. Jerry's pump alarm goes off every four hours to let us know he needs more formula and so it really is like having a baby again with getting up in the middle of the night. After almost two days home now though, I think we're getting into the swing of things a little. Later today, we are going to test out Jerry's backpack the hospital sent home with us and try and get out of the house for a little bit...get some sunshine...even if it is in the form of running errands.
When we got home from the hospital Jerry walked in and said, "Did we get new stuff? Our house looks so different." I guess if we thought two weeks in the hospital felt like a long time, it was an eternity to Jerry! He walked around touching stuff and asking, "Is this new?" It was funny. We thought we'd have a difficult time getting him back to his sleeping routine because of how wonky his sleep habits were in the hospital, but by 8:30 Thursday night, he was asking to go to bed. Amazing actually how smooth a transition back home it has been.
The worst part has been the rest of us having to eat while Jerry still cannot. In the hospital, we left his room to go and eat so he wouldn't see us. At home, that's just not possible. The trick is we have to tell him how terrible the food is we are eating while we eat it. Friends ordered us pizza last night and we had to make faces and pretend it was disgusting when he asked us about it. He is still limited to clear liquids and so we have stocked up on broth and icees and popsicles. It's hard to get creative with those and make them taste different or better than the last time he ate them. Of course, every channel we turn to on TV has food and restaurant commercials!
The best part about being home is sleeping in our own beds, showering in our own showers, and Jerry finally getting to take the baths he loves so much. Last night he worked at taking the bandages off where his PICC line was. He had to keep them on for 24 hours. He worked at them in the tub until he finally got them off and then said, "Oh my gosh mom! There's a hole in my arm!" That freaked him out just a little and he wouldn't use his arm for the rest of the night, but he's back to normal with it this morning.
With time to reflect since I have been home, there has been much to be thankful for...even over the last few weeks and all of our hospital drama. Trying to keep it all in perspective, I have made a list.
My point? God is good...all the time. All the time, God is good. I am sure I will think of more things that were blessings and we can be grateful for as the time passes, but that's my list for now.
And we do still need prayer. Jerry is still not out of the woods. We have to work towards getting this feeding tube out, prayerfully before school starts. His stomach and intestines need to learn to handle solid food again and he needs to gain weight. So keep praying. Just because we are home doesn't mean we still don't need it! Thank you again to everyone who has encouraged, supported, called, reached out to, fed, and loved on our family over the last few weeks. You are blessings beyond words.
No, this doesn't mean what you think it means, but it does mean we are getting closer!
After getting up to 69.5 pounds, he dropped a pound the very next day. The doctor says those first few pounds were likely water and/or poop though and so they expected him to lose them, especially since the TPN in his PICC line has been stopped.
She wants him up to 80-ml of formula/fluids an hour without nausea or vomiting before she will release him. Today he made it to 70! The doctor says tomorrow or Friday should be our release day. In anticipation, I sent John and the kids home with a bunch of the gifts, clothes, and other away-from-home necessities we had accumulated over the last two weeks.
He is still tolerating broth and popsicles well and I am wondering if, now that he feels better, he thinks this is some kind of vacation. He gets so much attention it's not even funny. The art therapist comes to do art projects with him. The Child Life team takes him to daily events where he tye-dyes pillow cases, makes plaster of Paris creations, and enjoys Zoomba dance parties with other kids there, and there is an endless supply of volunteers who want to play board games with him, not to mention his ABA Becca who does crafts with him for hours each day. Add to that the visitors, cards, gifts, and well-wishes and who would want it all to end, really?! Today as the doctor was talking to us about his prognosis and possible release date, he said, "Go home? Noooooo! Not today, right?" Seriously. We, on the other hand, are over it.
The home healthcare center sent his IV pole, feeding pump, month's supply of bags and tubing to be changed daily, and baby formula to the house yesterday. We are set up and ready for the transition home.
Just keep praying he tolerates the increases. 80-ml...the magic number!
Here is a site for sore eyes...Jerry eating by mouth. No solids yet, but we will take what we can get. They delivered him a liquid lunch tray of chicken broth, apple juice, and jello, but he turned his nose up at it apprehensively. The doctor said he may need his behavior therapists to work with him on eating again because he has conditioned himself to refuse food because he is afraid of feeling sick and vomiting. We finally coaxed him into eating his beef broth on his dinner tray though. He even followed it up with a banana popsicle. And so far, no nausea or vomiting.
Other good news came with the moment of truth on the scale tonight. He is now 69.5 pounds. That is 4.5 pounds since he hit his low of 65 pounds last week. Granted, the doctor says the first few pounds he gains will be water weight, but weight is weight and it has been worth the wait.
His Picc line is still in, but only for water right now. The TPN has been stopped. Hopefully in the next day or two, the water will be switched to go in with his feeding tube instead and the Picc line will be removed. They don't like to leave those in children any longer than they have to. As long as he has continued to gain weight by the end of the week, and the vomiting has not returned, we can take him home. We. Can't. Wait.
A home healthcare company delivered a feeding tube pump to us today, along with a pole to hang it from and a backpack so he can be mobile. The nurse gave us a tutorial on threading the tubing and entering the correct feed amounts into the pump for when we get home and a home health nurse will come again to go over it all with us when we are actually at home. The GI says that we will continue the feeding process leading up to solids at home nice and slowly and she will monitor his progress weekly as an outpatient. When he has put on enough weight and his small intestine is no longer obstructed by the artery, and his stomach is doing its part in the digestive process, the feeding tube can be removed.
Unfortunately, this means that our week trip to North Carolina for the Joni and Friends special needs family retreat has to be postponed until next August. We are sad about this. We were all looking forward to it. But we need to stay close to the GI doctor for a while and, in all reality, how much fun would Jerry really have at the retreat toting a feeding tube around everywhere with him...no zip lining or swimming. All activities restricted. Our family representative at the retreat center said that all of our money paid, gifted, and scholarshipped will remain in our account until next year and we will not have to go through the application process again.
We are still going to take the week off. We need the family time, especially now. We are just going to find things close to home to do instead, maybe even a few days in Orlando.
Prayerfully, this will all be behind Jerry before school goes back. Before would be even better so he can swim and enjoy some of his favorite summer activities before routine kicks back in for all of us.
Thanks for continuing to keep us in your prayers. Keep them coming and we
This beast visits us everyday in Jerry's room and we wait with baited breath while it determines the fate of the weight! And the wait...literally. According to this scale yesterday, Jerry has gained one pound in four days. He is now 66 pounds. The doctor says that, at this rate, we could be here a while.
Thanks to friends visiting and playing with him and the Speed channel and MLB, while he really wants to go home, he is coping quite well considering.
The GI doctor said his enzyme test results showed an intolerance for the sugars in both lactose (dairy) and maltose (pastas, cereals, grains), but that neither of these would account for the extreme weight loss that resulted in his hospitalization.
Another possibility is gastroparesis, which is where your stomach muscles stop contracting and so food sits in the stomach too long causing vomiting. They proactively have him on azithromycin, which forces the stomach muscles and intestines to contract and aids in digestion. They started him on that now in hopes that, when he eventually does start eating by mouth again, his stomach will be ready and maybe even contracting on its own. There is a test for gastroparesis, but no plans to do it as of yet.
Anyway, that's where we are as of the end of this weekend. The doctor says that recovery from SMA Syndrome is a slow and long process sometimes and so it's a waiting game and patience is required. Those of you who know me well, know that is a fruit I am lacking in!
I know, it doesn't sound like a day in the hospital. But today wasn't an average day here for Jerry. And that was a good thing. There were no tests, no needles, no x-rays. He woke up in a good mood and full of more energy than he has had in days.
After two games of Minions Life (his new favorite), we went down to the playroom where the Child Life team put together a scavenger hunt for him. He had to find 9 animals they hid all over the room. Child Life's whole job is to make hospital stays for the kids here as non-scary and fun as possible. They have even come in to explain in detail and using words Jerry can understand some of the procedures he has had to undergo. Here he is looking through shelves of toys during his scavenger hunt.
Then we headed back to the room for puzzles and Lego set building. His friend Hayden came bearing gifts of new socks and undies, some soft PJ bottoms, and Uno and Memory. After giggling through a game of Dr. Seuss Memory and building some more Legos, Hayden left and Child Life came back up to take Jerry to an activity time in the main lobby of the children's hospital. An hour and a half later, Jerry came back with some crafts he was quite proud of.
Sammy came then to build more Legos with him. And he is getting around very independently now as well. They still have a fall risk bracelet on him, but today he was quite the traveler, preferring the hallways and playroom to the four walls of his room. Here he is sporting his new accessories. He was dancing around impatiently waiting for Child Life to come and get him so it looks like he only has one leg!
Medically, he seems to be doing better too, though the progress will be slow-going. He did throw up again last night and became nauseous twice this morning. They still have him on scheduled doses of Zofran to help with that. We have been at the hospital one week today, and it has been that long since Jerry has eaten anything by mouth...7 days. They are now giving him all of his medications via his feeding tube because just taking those with a half cup of orange juice has made him very sick to his stomach.
The feeding tube and PICC line will continue to be his main food and nutrient sources for the next few days until he puts on a few pounds and then they can begin re-introducing food by mouth ever so slowly.
He cannot have any baths with the PICC line in. A nurse brings him heated antibacterial wipes once a day to wipe him down with. They are special wipes just for people with PICC lines in and form a barrier between his skin and bacteria since the PICC line goes straight into his heart and it is important to keep what surrounds it as sterile as possible.
The GI was in today to say that all of Jerry's biopsies were normal. They are just waiting on the sucrose and lactose enzyme test results. Again, it looks like it will remain a mystery as to why he lost all of the weight he did in the first place to cause the SMA Syndrome.
The doctor did say that she hoped we'd be going home by the end of this next week. We are praying that is the case. Thankful for everyone who has visited, brought him things to occupy his time here and play games with him, and for the meals delivered to the other kids at home. Next week, his ABA who comes to the house for his behavioral therapy each week, will come to the hospital to help fill in some gaps of time for him as well.
Thanks for the continued prayers! Keep 'em coming!
So this is how Jerry's day started out, with friends and the Minion Life board game in the playroom. He was giggling and happy and playing the game enthusiastically. Then all of a sudden, he looked up and said, "I don't feel so good." His eyes got droopy and he turned very pale. All he had ingested at this point was some orange juice and his morning medicines.
We gave him a bed pan and he put it in his lap and leaned over it for a few minutes. Then he requested to go back to his room so he could sit in the bathroom for a while...back on the floor, head resting in his arms on the toilet seat. And there he fell asleep.
We got him back into his bed and he slept for four hours. He is so exhausted. They tell you to get lots of rest, but then come in every hour for your temperature and blood pressure. Last night, they came in at midnight for an x-ray of his stomach. Then at 3:45 this morning, they were in for blood, which thankfully they got from the PICC line so he didn't have to get stuck again.
Last night's x-ray revealed two things. First, his PICC line was about 4 cm short of where it needed to be in his heart. Second, his NJ feeding tube had slipped out of the opening to his small intestine and was twisted on itself...rendering it ineffective.
At about 2 pm today, they gave him a sedative in his PICC line and sterilized his room and set up for removing yesterday's line and re-inserting a longer one. Because he had already slept four hours, the sedative was not as effective as yesterday and he remained fairly alert and agitated throughout the procedure. Can't say as I could blame him. I didn't watch, but saw initial hole in his arm where the first line went when they pulled it out and had sympathy pains of my own for him. Didn't watch the new one go in!
While he was still under the sedation, they took him back down to x-ray and untwisted his feeding tube and replaced it back in the entrance to his small intestine. If it continues to slip out, they may have to surgically stitch it into place temporarily.
So once again, the protein-rich nutrients will begin flowing through his PICC line and the baby formula will be hooked up to his NJ tube for him to try and digest.
In other words, we lost a day in the calorie-pumping, weight-jumping, fat-building mission we are on. Kind of a three steps forward and two steps back day.
He has enjoyed the many visitors who answered the call to help him pass the time though. And he loves the playroom games. When he feels too sick or tired to walk down there, we bring the games to him.
Mick made me a collage of Jerry from back in November and Jerry yesterday. Can't wait to get my chunky monkey back.
Since they are weighing Jeremiah every day now, they discovered today that he has lost three more pounds since he first came to the hospital five days ago. Considering they flushed his system out with liquid Miralax for the first two days however, they are not surprised or worried. He is now 4'10" and 65 pounds.
Today we got a partial diagnosis! Finally, some answers. Superior mesenteric artery syndrome, or SMAS for short. It's a rare digestive system disorder. This artery provides blood to the small intestine, cecum, and colon. It crosses over the first part of the small intestine, called the duodenum.
In the lateral view of the picture below, on the left side, you see where this artery is in relation to the small intestine opening (duodenum). As you can see, separating the artery and small intestine is what is called a fat pad. And who knew, but this fat pad is necessary for healthy digestion! Now if only all of the bodies fat pads were considered healthy, I would be Olympian athlete status!
Now look at the right side of the lateral view picture above and you will see what happens when you lose so much weight that you lose that fat pad separating the artery and small intestine opening. The artery acts as a bowel instruction, blocking the duodenal (opening to the small intestine).
(That concludes the homeschool biology portion of this blog post!)
In short (lol), the artery's obstruction of the small intestine is why Jerry keeps vomiting when he eats. His food cannot get past his stomach. Of course, since the weight loss is what contributed to the SMAS, we still need to figure out what caused the drastic weight loss in the first place.
Today was endoscopy day.
Tissue samples were taken from his esophagus, small intestine opening, and stomach. She is checking his enzymes and for any digestive diseases of these organs, including lactose intolerance. Pretty amazing stuff really. The biopsies will be back Friday. If they all come back normal, the weight loss mystery remains just that, a mystery.
For now, the goal is to put weight back on Jerry so his fat pad gets built back up and separates the artery from obstructing his small intestine once again.
While he was still under anesthesia from the endoscopy, his NG (feeding tube that went through his nose and into his stomach) was removed and an NJ tube was inserted in its place (feeding tube that goes through his nose and bypasses his stomach to go right into the small intestine). Sorry, more biology. He will be fed supplemental nutrition through that tube daily.
They also inserted a PICC line in his arm today to deliver extra nutrients straight into his veins in his heart to then be pumped efficiently to where his body most needs them.
In a few days we can hopefully reintroduce solid foods by mouth. It'll have to be small increments at first because his stomach has not been able to retain food for some time now and has likely shrunk (another problem I could live with). As soon as he is tolerating eating by mouth and is able to digest those foods via his stomach and small and large intestines (like everyone else), he will finally be able to go home.
In short, we are here for a while! So if you have kids, bring them to visit. He is getting bored. But don't talk about food or even smell like you may have eaten in the last hour because, even though his stomach cannot tolerate food right now, he is still hungry. Come to think of it, don't even come in with a food stain on your shirt. And if you don't have kids, come anyway. We have board games and Jerry would love to tell you all about the playroom down the hall. You might even get a field trip.
I will leave you with one funny from today. The GI doctor told us about taking tissue from Jerry's throat before performing the endoscopy. She left the room then and Jerry looked at us and said, "No wonder I am throwing up. There is a tissue stuck in my throat!" In true Jerry fashion! Love him!
Tooday was fairly uneventful, as far as the last few days have gone I suppose. Jerry had an upper GI with contrast done today. Basically, they filled his belly via his feeding tube with 300 ml of barium and then watched as he digested it. Sounds simple enough, except that the entire process took four hours.
First they watched as the barium filled his belly. Then they rolled him on his left side to expedite it moving into his small intestine. An x-ray was then taken once every 15 minutes for the first hour to track the liquid's progress. After that, it was an x-ray every 30 minutes until the barium was finally dumped into his large intestine, which can take anywhere from 2-3 hours.
He was such a champ about it, going from gurney to x-ray table whenever they told him to. And not knowing that the test would be that long, I took nothing down to entertain him, except me. And I learned that I can be very entertaining when the situation calls for it! In the end, there was lots of head rubbing and back scratching to keep him patient. Me, not so much. I was pretty much done.
Back up in his room, Michaela anand Ben were waiting to take him to the playroom on his floor to get out some of that pent-up energy.
His feeding tube of a milder formula of the Pediasure was started again as well. The GI doctor said that him throwing up from it last night was not a reason to quit trying, as our main goal is to get some calories in him and weight on him. His nurse even let him have some orange juice this evening.
We have not heard directly from the neurologist yet, but did overhear the day nurse telling the night one during shift change that Jerry's MRI was normal and showed nothing that would be responsible for the vomiting. So that's a relief.
And while we don't want their to be anything wrong or found persay, we know there has to be a logical explanation for the massive weight loss and vomiting and do pray for a definite resolution.
Tomorrow, we will get the results of today's upper GI and Jerry will also be scoped while under anesthesia so that his esophagus, gall bladder, liver, and thyroid can be examined and biopsies taken of each. They are also going to run tests on all of his enzyme-digesting abilities, as that could also be a culprit inducing the vomiting. They are being as thorough as they can be to get to the bottom of his issues and for that we are very grateful.
We did switch rooms today. We were in room 828, which is the Scripture reference to one of my life verses that says, "And we know that in all things God works for the good of those who love Him, who have been called according to His purpose." All things...not just the feel-good, happy, comfortable things. All things happen for a reason. And it's usually for a bigger purpose than we can or will comprehend this side of heaven.
Today we were moved to room 818. Romans 8:18 says, "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." In other words, that suffering is chiseling away at our unfinished hearts and minds to someday reveal hearts and minds more refined and conformed to the image of Jesus. So it's all about perspective. And all things considered, we are very, very blessed.
Still no answers. But we may be getting closer. They took little man down for his MRI around 2 today. He handled the no food or drink beforehand pretty well. He is so tired from all of the interrupted sleep that they had a hard time waking him after the procedure. They were just about to give him something to counteract the anesthesia when he finally woke up.
Back in the room, the GI doctor decided it was time to get some calories back in him. They will not let him go home until he is gaining weight again. They started Pediasure in his feeding tube. They started at a very slow drip with the intent of increasing incrementally every hour.
By the time they reached maximum dosage hour, he was green. Thus the picture of him hugging the toilet. And yes, i realize hugging a hospital toilet is unsanitary, but it's what makes him feel most comfortable when his stomach is making him feel the most miserable. He kept trying to get up and make it back to bed, almost willing himself not to get sick, but in the end, the Pediasure got the better of him. It has to run until 2 am, but they backed the dosage down. Praying that keeps the Pediasure down!
But while vomiting is no fun...for any party involved in the act or the cleaning up of said act, we are praying this gives the GI some clear direction. She did say that if he threw up the Pediasure, it would help her eliminate certain possible culprits for his nausea and weight loss issues. We'll see.
Tomorrow morning sometime the upper GI procedure is happening, where she will get a clear look at his liver, gall bladder, kidneys, and stomach. While we obviously want there to be nothing wrong with Jeremiah, we are ready for them to figure out exactly what is going on and then devise a plan to fix it. Two weeks ago we had to buy Jerry size 8 Garanimals pants people....Garanimals! My kids haven't worn those in YEARS. But Jerry was walking around one-handed as he needed the other one to hold his pants up. I do not want to downsize the drawers again!
A few bright sides and entries for the thankful journal...ESPN's Speed Channel on cable TV here at the hospital had Monster Jam on yesterday. The only downside for Jerry was that, because he had an IV, he could not flap his hands and jump up and down.
Also, this hospital stay already has last Christmas beat in the way of gifts received. Being a cute fourteen-year-old skinny boy with long eyelashes and stuck in the hospital in the middle of summer pays dividends. He has puzzles, gift cards, candy, remote control cars, stuffed animals, and even a motorcycle helmet as part of his sympathy stash. He has reached the point where he asks now what someone bought him when they arrive to see him. Apparently, there is a visiting tax one must pay.
Thank you everyone for your prayers, texts, offers of help, visits, and even dinner for my other babies stuck at home alone while John and I are at the hospital with Jerry. I'll keep everyone posted.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.