Edit: Since I transferred all of this back to blogger the format is a little strange so sorry it looks a bit weird. Post # 269. Blogger (the site I normally use) has had a mass explosion. Luckily I didn’t lose any posts like some people in the blogger world did. So here I am on Word Press. I’m planning on transferring everything back to blogger as soon as Blogger is fixed. But it would seem that they are having a major problem and may not be up and running any time soon.
Today was Ronan’s big surgery day. His esophagus needed expanded since it had once again strictured (nearly collapsed). All of this is due to a condition he was born with called Esophageal Atresia and TE fistula. I know I’ve reviewed this before but in case you don’t know or don’t remember. It meas his esophagus was in two pieces and one of the pieces was attached to his trachea. He had his esophagus sewn together at 1 day old. But because of this birth defect it occasionally narrows/collapses making food hard to pass.
This morning started at 5:00 am. I waited to get Ronan up until it was ten minutes before we had to leave. I didn’t want him to crawl over to his food cover and hit it repeatdly. I knew this would cause him to mope and be distressed the rest of the morning. Instead all I left time for was to change and dress him. The car ride would distract enough for him to not reminisce about his food cupboard.
We checked in and then waited and waited. We were lead back to our room where we waited some more. Ronan enjoyed standing in front of the big rocking chair and rocking it back and forth. He had three visitors who were staff come to visit him. They had taken care of him in the past and wanted to see how he was. They told him his new haircut suited him.
The doctor came in and once again went over the risks. I signed the release and his usual buddy from childlife specialty came to carry him back. He knows her well so he readily went to her. I went back out to the main waiting room and watched the news. There was an interesting story on ordering credit reports for your kids because ID theives are stealing babies social securty numbers before they ever even receive a number.
His GI doctor came out to talk to me. He showed me the pictures and there was a significant difference between the size his esophagus was and where it should be. He also told me he was concerned he might has perfriated Ronan’s esophagus because he had to use so much pressure to get it to dialiate. He said Ronan would need a chest x-ray before we could leave. If it had been prefriated he would have to go to the PICU and have esophagus sewn back together again.
They lead me back to Ronan and he was crying until I took him from the nurse. Once he saw me he smiled and the tears stopped. He greeted me with a face pat and a little laugh. He was very happy for just having his esophagus pushed on and stretched. The nurse tried to get radiology to bring the portable x-ray machine up but they didn’t want to. After an extensive argument between Ronan’s nurse and the radiology tech the nurse went back to the doctor. The doctor said Ronan could go down for the x-ray as long as we didn’t leave before we got the results.
The results showed Ronan’s esophagus was still intact and we were able to go home. He has to go back in August to have the dialation repeated. After that it will be an as need basis. For about two months now Ronan has been having head shakes. He looks like he’s unintentionally saying “No”. His head jitters back and forth. A nurse saw it today and suggested I ask his doctor about it. I had been wondering about it so when I got home I called his doctor. His doctor had been called out of town on a family emergency so another doctor took the message.
She wanted to see him this afternoon. I was thinking a nap sounded better but thought I should take him if the nurse and doctor thought he should be seen. After we got there and explaining it again the doctor came to the conclusion he was having infant shakes. She said it would resolve itself and some kids take longer to get rid of them. I told her that he hasn’t had it before two months ago. She still thought it was just the shakes newborns get.
I was a little frustrated if that was her opinion she should have told me over the phone because I gave her indentical information over the phone. I asked what I should do if it gets worse. She said don’t worry it’s ok if it gets worse. I decided if he’s worse by his two year check up I’ll bring it up to his regular pediatrician.
Back at home Jadzia made towers using the Babies’ food. She became frustrated when Inara tried to steal a few puffies from one of Jadzia’s tower supports. It has been a long day so I think I’m going to bed early.
Now for esophagus pictures. I saved these for last just in case you are a squeamish individual. If you don’t want to see pictures of his esophagus don’t scroll down. It’s NOT bloody or gory or anything. It looks like a tunnel but some things like this make people uneasy so you have been warned. I will leave a gap and you may continue at you own risk.
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Picture # 1 the before. This is how big his esophagus has been sitting and why the bread got stuck.
This is the after. You can see how much bigger it is now which is how it should be.
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