Tube-Free, But Not Home-Free

Tube Free Smile!

Hmmmm.....what's different about this picture? Ooohh, I know, I know! There's no more feeding tube! Hallelujah!

It all started this past weekend when Jeremiah managed to lengthen the amount of tubing outside of his body to just above his bum. We were coiling it up to his collar and taping it there to keep it from getting snagged on things and pulling out any further. I called the doctor yesterday, explained what was happening, and she got us in today for an appointment to manipulate the tube back down further into his stomach.

According to his small bowel follow-through last Thursday, the tube had already dislodged from the opening to his small intestine and was already sitting in his stomach. But because he was tolerating the formula well going into his stomach and not feeling or getting sick, they didn't worry about its placement.

Well, the reason the tube slipped out is likely because the mesenteric artery was no longer clamping down on the small intestine opening to hold the tube in place. That's right! The SMA syndrome is finally beginning to correct itself according to last week's test results. Again, hallelujah!

So the doctor decided today to simply pull his tube and see how he does! Big sister Michaela went along to hold his hand and encourage him to be brave.

We are not yet out of the woods. We still have to go back in two weeks and he needs to have gained weight by then. Today he weighed exactly what he did when he was discharged from the hospital...70 pounds. Keep in mind though, that while he is not eating as much as he used to, Jerry is still as active as he ever was. He has been walking with John and I two miles each evening just because he likes going on walks! Add to that his already high metabolism and family genes (Have you met his dad?) and, well, let's just say that Jerry will never be a gladiator.

So for the next two weeks, he eats, continues the DuoCal, keeps taking the Azithromycin which aids digestion in emptying his stomach, and did I mention...HE EATS! That's key. If he does not put anymore weight on, they will start him on Periactin, an appetite stimulant, which I would rather they did not have to do.

For now, we are celebrating this HUGE step. After 61 days, he is tube-free, we get to sleep through the night, and the home health company is scheduled to pick up his pump, pole, and backpack sometime in the next few days.