Yesterday Jordan had a Tonsillectomy, Adenoidectomy, Microlaryngoscopy and Brochoscopy!! We knew that her tonsils were quite large and almost touching in the back of her throat and the ENT said that her adenoids were also large and it was a good thing to get them out now since she's not in any feeding therapy program. The scopes were an opportunity to see if there was an anatomical difference that could be causing her to aspirate or have difficulty swallowing. There was nothing found that would be causing problems so we continue to see her complications related to her lack of oral motor skills and dysphagia. However, the scopes did show that Jordan has some damage to her esophagus all the way up past her vocal chords due to reflux.
A year and a half ago, when Jordan had her G-tube placed, they also performed a Nissen Fundoplication. This procedure essentially takes the top portion of the stomach and wraps it around the bottom of the esophagus forming a one-way valve. The result is that food can go into her stomach but that it blocks stomach contents from coming back up. It also won't allow her to vomit or burp or anything. The winter following her Nissen, she was sick quite often and although the first several times, she was only wretching and gagging, eventually she was able to fully vomit. Then last summer during feeding therapy it was noted that she was able to burp and we even noticed reflux a few times. We just had no idea how much reflux she was having and the damage it was causing...but now we do.
Jordan's stay at the hospital was fairly uneventful. After her surgery, she was admitted to the Pediatric Intensive Care Unit. Although she probably would have been fine in the general peds unit, due to her history of aspiration, her ENT was being overly careful. The nurses were all great and we felt that she was well cared for during her stay. The only complaint I have of the entire hospital stay was the bed I was expected to sleep on was HORRIBLE!!!! The nurse ended up bringing me a couple of extra pillows and I layed them on the mattress and slept on them!! Well, I use the word "slept" very lightly since Jordan only slept in short segments all night. I don't think she ever slept over an hour and so I was up frequently to console her, cuddle her, change her diaper, or get her more meds. It was great when the ENT stopped by for rounds at 6:30 am and filed discharge paperwork so we could get home early!! By 9:30 we were in the van on the way home!
She played around the house for an hour or so and then after her 11am feeding, she and I both took a nice, long nap!! This afternoon she was very cuddly, but also enjoyed some time running around and playing. After her bath tonight she cuddled up with me on the bed and fell asleep. I'm hoping that as long as I keep her comfortable with her pain meds, she should sleep quite well tonight.
Today after we got home from the hospital I called Jordan's Neurodevelopmental Specialist who originally ordered the G-tube/Nissen to see what they want to do following the information we learned yesterday. I am waiting to hear back from them. I'm assuming they will start her on some meds right away and then I requested a consult with a gastroenterologist to evaluate her digestive situation before just going back in and redoing the Nissen.
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