21 Days

Our New Normal

When Crafts Are All You Can Do

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!
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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.

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