These I'm not sure what was up with the above face other than Ronan thought it was hilarious to make that face. He attempted it several times and then laughed each time. Maybe the hospital is causing a little cabin fever craziness. Whatever the reason I'm glad he found something to laugh about. The hospital days are beginning to blur together. We are going on five nights with a possibility of being released tomorrow. Ronan would be quite pleased to escape the white walls and caged crib. But tomorrow's release has many stipulations. I wrote on Sunday how he was choking on pureed foods and no one knew why.
His surgeon came in on Monday to try and figure out the mystery. He said he'd never seen this before. I didn't find that comforting. Ronan also began refusing his bottle. He would take a few ounces and then toss it across the room. I had him demonstrate for his surgeon. His surgeon wanted to give him more time and said if he was still having problems in the morning he would order a swallow study.
For his 5:00 am feeding he had a very messy ordeal. Milk went everywhere. The surgeon ordered a swallow study because he wanted to see if the wrap from his surgery was correct. They wheeled us down to radiology and set everything up. We had to wait for about an hour because they weren't sure if this was the right test for Ronan. I didn't mind because Ronan was happy to be out of his room and our student nurse was friendly and we had great conversation.
Once they started the upper GI we could all see the problem as soon as he began swallowing. The radiologist told us to stop feeding him immediately. I've been to enough of these tests to know what was wrong. His food stopped short right where his esophagus met his stomach (right where the wrap was). The liquid basically dripped into his stomach rather than all going right in as it should. His wrap was way too tight. The radiologist said nothing will pass but liquids.
Below Ronan rocked himself to sleep. Yes, he was completely comfortable this way.
This explained the choking because the food built up until it blocked his airway. I waited the rest of the morning and afternoon for his surgeon to finish his clinic duties. When he did arrive he had a couple of ideas. We would log Ronan's intake for 24 hours and give him 2 oz bottles every hour to hour and a half. If his intake is enough to sustain him he will be sent home on a strict 2oz diet every hour. In a week he will be tested again to see if the wrap has stretched on its own. If that's the case that will be it and nothing else needs done.
However if he still can not eat then he will have to go in for a dilation and his surgeon said most likely the dilation will undue the wrap and his surgery will need repeated. The other thing is if his intake is not enough he will stay in the hospital until this Thursday and then the dilation will occur then and more than likely a repeat of the entire surgery.
I'm hoping he will be sent home and it will stretch on its' own. I will gladly give him round the clock feedings if we can avoid another surgery. Also the doctor told me he's been doing this surgery since 1980 and other than a similar case during his residency he has never had this happen. Out of the thousands he's done Ronan is the only one whose been like this. I'm not sure how I feel about that. This means there is little data on how a second attempt will affect him.
At this point I'm leaving it to God. He has gotten Ronan this far. He brought him out of the blue episode and protected his airway from many potentially fatal aspirations. I know he can get Ronan through this too. I'm also hoping Ronan will be happy again as he has been very sad the last couple of days. He loves to eat and this has been hard on him. He is also very tired of his hospital room and lights up when anyone comes to see him. The rest of the time he cries a lot and I feel bad for him.
He did have a break from being grumpy when I brought him a slinky. It is his favorite toy and he loved it. I love how it's the small things that improve his mood, a person smiling at him, a hug and something as simple as a slinky. He's one great little boy.
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