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.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.