Happy Little Boys

Well after a few more rough days in the hospital and a CT scan, the decision was made to place an esophageal stent to cover the hole in Andrew's esophagus. They also needed to place a 2nd chest tube to drain a pocket of fluid that the first chest tube hadn't been draining. And while they were at it, we asked if they would place a central line so that Andrew wouldn't have to keep being poked for IV's and blood tests.
The procedures were done on Jan 11, and went well. Although it was painful to have another chest tube, Andrew actually started doing better. He didn't need oxygen, and was less lethargic and "sick" seeming. The stent worked, and after a few days his chest tubes stopped draining fluid. The first one came out the night of the 13th (because it was starting to move too much) and the second one came out the next day.
Andrew still needed IV anti-biotics, but was able to come home because we had the central line in place. He was discharged on the 15th.
He was still not allowed to eat and was very weak. He could hardly even stand on his own and could not walk. He started better bit by bit. He was allowed to start drinking fluids (although he never really was interested in them). After another esophagram (Jan 21) that showed no leaking around the stent he was allowed to eat again.
We were home for his birthday, but waited until he could eat before we celebrated it.

Andrew had been coughing and wheezing since we'd been in the hospital, but it seemed to get worse around Jan 24. He was also getting in more pain. The doctors thought he might have croup, so they put him on oral steroids for 3 days. He did much better until that drug was done, and then got even worse. Finally on the 28th we were going to visit my family in Ogden for the weekend. I called the surgeon and asked if he wanted to see him while we were passing through Salt Lake. I'd been keeping in touch with him through the week and he was very anxious by that point to see Andrew.

As soon as he saw and heard him breathing he felt that he needed to do endoscopy and get a good look at the stent. We'd had several x-rays that had looked ok, but something was still off. Because it was already 4:30 on a Friday, they admitted Andrew to the hospital for the night and did the scope the next morning.

They found that the stent in Andrew's esophagus had pressed into his trachea and was taking up a good portion of his airway, so they removed the stent. It had been in not quite 3 weeks by that time, and the goal had been 6. Andrew had an esophagram to check if his esophagus still had a hole. It was inconclusive, but if there was a hole it was very tiny. They monitored him for another day, and then let him go home again on the 30th. He wasn't allowed to eat until Thurs, when he passed his next esophagram.

He had to be on J feeds 20 hours a day during that week he couldn't eat, but did pretty well. He learned how to pull his feeding pump behind him when he walked. He would ask for food, and as the days went by got more and more insistent on having some. Finally Friday he came across half a banana that Tyler had left on the table. He was soooo proud of himself, and pleased that he'd finally got some food.

So now we have a happy Andrew again. He is off all the anti-biotics and pain meds, and eating almost constantly. He does get food stuck from time to time, but mostly because he's eating so fast that he's not chewing before he swallows.

We are so pleased that he's doing so well, and to be home 'normal' again.

From here we just see how things go. We do not have another appointment scheduled, and hope that the only follow-up Andrew will need will be to have the central line removed and someday his g-tube removed. It is so nice to just relax again.