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 have been home three days now and Jerry is getting around better. He is at least standing up straight and walking a little bit faster than Tim Conway on the Carol Burnett Show. Wow. That just dated me, didn't it?!
Anyway, we are home, we are surviving on the new diet, and the shock of it all is finally starting to wear off as we settle back into routine. Tomorrow Jerry even returns to school. And I say that "we" are surviving the shock of the new diet because this really is a family thing. We are all adapting to what Jerry can eat at home, out at restaurants, and when at others' homes.
We saw the GI doctor today for his follow-up and he is at 68.2 pounds, a few less than what he was discharged from the hospital at, but with the change in diet, I think that is to be expected at first. It has been a frenzy of Pinterest and Google around here to figure out what he can and cannot eat. Thankfully, the dietician at the hospital gave me her cell number should I have any questions. She is likely regretting that decision right about now!
We follow up with the GI again in 5 weeks when we will schedule Jerry for a one-day outpatient surgery at St. Joseph's to get his G-tube replaced with a button-style one. Basically, the extra "appendage" now dangling about 7" from his belly will be gone and just a button-style protrusion will be there as a feeding port instead.
When does that one get removed? That is the million dollar question. It's all up to Jerry I suppose and how quickly he gets back to eating normally and gaining some serious weight. And so the journey continues.
We are finally home! The doctor who did Jerry's G-tube surgery discharged us yesterday morning at about 8:30 am. We didn't actually leave the hospital until almost 3:30 pm however. There were problems with finding a home healthcare facility that carried Jeremiah's formula. Then there were problems with trying to convince Cigna that Jeremiah needed the formula prescribed him. It is different from what they gave him last time. And there is a very good explanation for that.
While we were waiting, the dietician came into our room to speak with us. She reviewed Jeremiah's small intestine biopsies at the request of the doctor herself. It turns out that Jeremiah is lactase and maltase intolerant. In other words, his body lacks the enzymes necessary to break down foods containing lactase and maltase. Your lactase enzyme levels should be between 15.0-45.5. Jerry's is 3.6. Maltase should be between 100.0-224.4. Jerry's is 83.5.
This means that every time Jerry eats something with lactase or maltase, his body struggles to digest it. This could finally explain the stomach pain, alternating constipation and diarrhea, unexplained weight loss, and ultimately, the hemmorhoids from straining so much.
Because of his history of very loose stools (TMI, I know) from the time he was a baby, it is likely that he has been intolerant to lactase and/or maltase all of his life and we just didn't know it. We did have him to a GI for Celiac testing when he was a little guy, but when the results came back negative, we just stopped looking for answers. We had always been told that kids with autism often have GI issues and so we just assumed this was all a part of the diagnosis. It wasn't until the SMA diagnosis last summer that anyone started digging a little deeper.
We still don't know if these intolerances caused the SMA in the first place or if they are just contributing now to his inability to recover completely from the SMA. And we likely never will know. Which came first, the chicken or the egg? Who knows?! But at this point, it doesn't matter. What matters is that we finally have some real answers.
So now we work on eating...the right foods, the proper amounts, at regular intervals. His new formula is Pediasmart Organic Soy Vanilla. It is no GMO, no corn, dairy free, and gluten free. Already we see the difference in him in the mornings as compared to the regular baby formula they had him on even just a week ago when we first arrived at the hospital. He would wake up in the morning complaining of a stomach ache and then spend a long time in the bathroom hurting. He woke up yesterday and this morning with no pain and, for him, a regular bathroom visit.
So the diet restrictions are lactase free (no dairy) and the specified carbohydrate diet. Click on the link to read more about it. I didn't post this last night after we got home for a few reasons. First, we were exhausted. Second, we were still waiting for Jerry's home health equipment until 9 pm last night. Third, I came home and began researching all I could find out about the SCD diet and was completely and totally overwhemled, to the point of tears. I knew I was just too tired to be looking into anything, but I also needed to know what we have to do, change, buy, etc...all the logistics.
The dairy free will be easy. The simple carbohydrates only, not so much. It appears more strict than gluten free and there are certainly not a lot of already prepared or packaged products ready to be bought and eaten for people on the diet. Still, I am glad we have answers and we will certainly do whatever we have to in order to heal his belly and get him back on the right track. He will also still be evaluated for and begin feeding therapy at All Children's in the very near future to work on his food sensory issues as well because we know that is a component too.
In the meantime, one praise is that the rate his formula runs at night for the ten hours he is feeding is slow enough that we do not have to wake in the middle of the night to add formula to the bag. That is not a small praise. That is monumental. The lack of sleep last time was hard on all of us with machines beeping and formula-mixing in the middle of the night. Last night was our first night home and everyone slept soundly all night long. Ahhhhh. So nice!
So keep praying for us. We have a lot of work to do and some life habits to change. And I need a food dehydrator and Ninja food processor if anyone happens to stumble across one at a yard sale or knows of someone not using theirs. Thanks for all of the prayers and as always, I will keep you updated.
Jerry finally got his G-tube this morning. While I am sure he was pleased to wake up with nothing trailing from his nostrils anymore, I am not sure he would have traded the NG tube for what he woke up with had he known then what he knows now. It hurts. And it will for a while. He has a foreign object inside of him and protruding out of his stomach. Ouch.
On a positive note, Jerry is quite entertaining once the Morphine kicks in. After his first dose this morning, he began singing Jesus Loves Me. It didn't last long though before the pain and discomfort were back. Then he is irritable, restless, and oh so sensitive to every "irritation" around him, which this afternoon mostly had to do with his brother Ben. I swear he could hear Ben breathing and was thoroughly annoyed, which by the way Ben found quite entertaining in and of itself.
And he can't seem to find a position where he doesn't hurt. The bed goes up, the bed goes down...over and over again. Hopefully tomorrow we can get him up and walking to ease some of the discomfort and work out those sore and stiff muscles. He is finally out of isolation now that all of his cultures came back negative so he can even go for a walk outside. They have a nice garden close to his room. The fresh air should do him wonders. I know it will me!
And tomorrow he should be allowed to eat again as well. He has been NPO since midnight last night. Not that he seems to care much. I think the g-tube pain is overriding the hunger pains.
The plan is still to go home Friday if all goes well when they test out the G-tube tomorrow. It needs 24 hours to heal some first before they use it. Besides, his stomach is tender right now after having been "hole-punched" and so they don't want to aggravate it any more today. I think that is why he cannot eat or drink today as well. In my twisted sense of humor mind, I keep picturing the old Saturday morning cartoon characters like Yosemite Sam who, after having been shot, would drink water and watch as it fountained out through the bullet holes in their bellies. I think I'd freak just a bit to see red Gatorade (Jerry's favorite beverage) come whizzing out at me from a hole in his stomach!
And I am grateful to friends who can sew...who thought they were done sewing costumes and the like for my children when they quit participating in drama classes. Thank you Sue for sewing G-tube covers for Jerry, a necessity to keep his tummy skin protected and dry from leaks and irritations. It was overwhelming to think about shopping for those on Etsy and Amazon and eBay. Too many choices and varieties. From beaver costumes, ball gowns, and wolf leggings to G-tube covers. You are amazing and a blessing. And it helps that you are a nurse too!
It's a delicate balance around here now. As mom, I want to carry him to the bathroom when he has to go, summon the nurses for his Morphine twenty minutes before it's due again, and slide into bed next to him and rub his head and scratch his back to take his mind off of the pain. But as mom to Jeremiah, a little boy with autism, I know that I need to be careful how much I give this attention-seeking little man of mine, lest I create a whole new monster to contend with once we are finally past this current crisis. Not wise. But he is still my baby. Conflicted. Hence, the delicate balance.
Discouraging news today. Jerry couldn't eat anything past midnight last night and they wiped him down with antiseptic wipes twice since then to prepare him for his G-tube placement this morning.
We get to pre-op, see the doctor, and are just waiting for them to take him back when he tells us he has to pee. When he gets up from the gurney we see blood. And the back of his underwear are soaked as well. I didn't say anything in front of him because I didn't want him to freak out, but I got a nurse who got the doctor. He decided that the procedure needs to be postponed until we figure out why he is bleeding. So back to his room we go.
After examining him, it's determined he has a bad hemorrhoid that is bleeding. But to make sure that is all it is, they are running cultures on his stool for a staph infection called C-diff and other bacterial infections. Because all of his biopsies returned normal, it is not pathological. And it is likely not C-diff because he is presenting no other symptoms at this time, but they have to be absolutely sure.
In the meantime, he is in isolation, meaning no more walks, trips to the playground or basketball court, or Child Life activities. In his words, "This sucks." Mrs. Kim was here and tried to encourage him by helping him think of things that "don't suck." He said God hates him. Makes my heart hurt for him. We just sat in his bed and cried together. It does suck. He has that right. But as Kim reminded me before she left, ALL things. For whatever reason, Jerry was not meant to get the G-tube this morning and we are meant to be here a while longer.
Because the results from the culture take 48 hours to come back (the C-diff only an hour), his G-tube insertion is now scheduled for Wednesday morning, barring any other complications or delays. Then Thursday morning they start his feeds in the new port and, if all goes well, we will go home Friday.
Poor guy is standing next to his bed now because it hurts to sit on his bottom. I am discouraged. He is too. We just want to go home. Instead, I gotta put on my happy mom face, find a positive in all of this, and become very entertaining for a 14-year-old's amusement. Lol!
Update: They just came in and said the C-diff test was negative. Guess I have my first positive, huh? Thank you Jesus.
So the results are in. All of Jerry's biopsies and his test for SMAS are negative. However, if he doesn't start eating and drinking again, the SMAS will return and we will be back here yet again.
So now that we know this is behavioral/psychological, we at least have a starting point, if not a plan yet. They re-inserted his NG feeding tube about an hour ago. They had removed it after using it to clean him out. Not sure why. They should have just left it in "just in case." Anyway, they didn't and there were lots of tears over getting another new one today, shed by Jerry and his mom.
The plan medically is to work on getting him to eat during the day by mouth and then feed him 360-calorie-a-can formula from 8 pm to 6 am. After seeing how well his stomach tolerates this over the weekend, Monday they will put him to sleep and two GI doctors will convert his NG tube into a G-tube. One navigates the internal camera to choose the proper placement while the other doctor actually makes the incision and attaches the tube to his belly. Again, this is a more permanent solution to feeding him at home until we get him eating and drinking again. If the calorie rich formula proves to be too upsetting to his sensitive stomach because it hasn't had to handle that many calories in a long time, then they will back him down to a milder formula.
I spoke with Jerry's behavior therapist today and her and his other therapists are working diligently now on a plan to change his behavior and habits and get him eating again. I am anxious to implement this new plan they are working on devising. We are speaking to an occupational therapist about sensory issues and how to cope/compensate/correct them. Feeding therapy may also be in his future. In the meantime, we have to begin logging everything he does eat and drink. We are going to try to figure out a connection between what he is eating and the sensory stimuli he is either looking for or trying to avoid by eating that particular food.
While initially I was angry when I realized this was all behavioral, I truly believe that he cannot help what is happening. He cries over food, literally. He cannot tolerate the smell or the taste or the texture. He wants to go home. He hates the feeding tube. He is not doing this on purpose. And it likely does hurt to eat much of anything at this point. His belly and colon have not had to work hard to digest much of anything lately. So when he does eat, it hurts. He ate a few bites of his lunch yesterday afternoon and then sat on the potty for twenty minutes in pain.
We have our work cut out for us. So does he.
It is the end of day 3 here at St. Joseph's...take 2. After a grueling cleaning out process, Jerry underwent his colonoscopy and endoscopy today. The results? Nothing worth writing home about as the saying goes. Besides some mild gastritis in his stomach, his scopes were not very revealing. The doctor did say that there are some things that simply cannot be seen without a microscope and so he did multiple biopsies from Jerry's esophagus, stomach, and colon. Those results should be in Friday.
So now what? Tomorrow morning Jerry will have another small bowel follow-through, his third since July. This will show if the SMAS has returned as a result of his loss of appetite and even greater loss of weight. His weight is less now than it was when he was released from the hospital back in July.
If the SMAS has returned or is even on the immediate radar, they will re-insert his NJ tube into his small intestine so that we can begin supplementing him with nutrients from special formula in an attempt to bulk him up again. Not that bulk has been any sort of descriptor for him at all over the last 10 months since this battle first began. The most he has weighed since last April is about 75 pounds. Now he is 65.
For as much as Jerry hates the feeding tube, I am giving myself the perseverance and patience pep talk having him home with one will require for us as well. It's an IV-pole-toting, formula-smelling-and-mixing, tube-leaking, booger-encrusted, sticky-face-tape-wearing, kinked-tubing, error-beeping, up-in-the-middle-of-the-night, pole-dragging-up-and-down-the-stairs, endless-supplies-ordering, line-flushing existence that takes time to see as routine. Nor do I want it to become such.
If the SMAS is not present or an impending danger, he will be evaluated for a G-tube instead. And no, it is nothing like a G-string. A G-tube is surgically inserted into his stomach and considered a more long-term feeding support system. It's also a more discreet, less embarrassing option for an active teenage boy in school.
Of course the great mystery has yet to be answered. What made Jerry stop eating, caused his subsequent weight loss and eventual SMAS, and resulted in this crazy roller coaster ride for us all in the first place? That is the million dollar question folks. And no one really knows. But one thing we are certain of at this point. If Jerry's biopsies taken today come back normal, the only other possibility is that this is behavioral.
In other words, somewhere, somehow, and at some point, Jerry associated food and eating food with a negative reaction or experience that he cannot forget. Maybe something he ate made him sick once. Maybe it had nothing to do with something he ate at all, but he developed the flu or caught a virus after eating once and so now he associates eating with getting sick and so naturally doesn't want to do it. We've all had similar experiences where the thought of a certain food or even simply smelling it conjures up some foul memory and we just can't bring ourselves to eat it again, even if it was once a favorite food. It may not be rational, but it doesn't matter. Maybe it's an autism-related sensory issue with an out-of-whack sniffer or touchy taste buds. Lord knows we have seen heightened sensory intolerances since he stopped all of his medications. Maybe it's anxiety or fear. At this point, we just don't know. And we may never know. It really doesn't matter. All that matters is getting him to eat again before his tiny self becomes so malnourished that organ damage results.
Physical versus behavioral. If there is one thing I am absolutely without a doubt certain of, it is that behavioral in Jerry will be so much more difficult to reverse and resolve than physical would be. Behaviorally speaking, we are always three steps forward and two steps back in progress-making.
I have to be honest. While I was listening to the specialist tell us that Jerry's scopes appeared to be normal overall, I couldn't help but become discouraged and disappointed. Please hear me out and don't misunderstand me. I do not want anything serious to be physically wrong with my son. But I was hoping for a logical, non life-threatening, swiftly and easily remedied solution to why I have a 65-pound teenage son. Of course, now that I re-read what I just wrote, I see the word logical. And therein lies the problem. Nothing about parenting Jeremiah has ever fallen into the realm of logical! Lol! Why should this be any different?!
Still, we have no definitive answers until the "fat lady sings" on Friday, as these scopes he had today exhaust the battery of GI tests that could reveal what's going on in his little body. And so I am going to refuse to cross that bridge until I come to it, even if it is only two days away! Gonna walk slowly people!
And so that ends day 3. Overall, it was a day that started with the beginning of a much-needed new ladies' Bible study semester, non hospital coffee (It's the little things.), a friend sitting with us while Jerry was in his procedures, a visit from Pastor Mike, another friend getting Micky out of the house for a fun afternoon, that same friend ordering us dinner, getting to go home for a few hours and eat with the other kids, Ben looking and feeling slightly better from his flu bout, Jonathan taking care of replacing two old car tires after we got a flat on the way home from the hospital, John's job and boss being flexible enough for him to work from anywhere with WiFi, a daughter who kept the house running and clean while I was here all day, one of her brothers was sick, and the other one was at work, Jerry's behavior therapist coming to visit with goodies in tow, family coming to visit with Apple pies from Checker's, friends and family from all over texting, FB posting, and calling with well wishes, prayers, support, encouragement, and offers of help, uneventful and uncomplicated anesthesia and procedures, and complete and total strangers dropping off age-appropriate fun boxes of games and activities for each of the kids in the children's hospital. Blessings. More blessings than worries, worries I have absolutely no control over anyway. It's all about perspective I guess.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.