Tuesday, May 19, 2015

Eli's G-tube Surgery

During the last few months, Eli's swallowing abilities got increasingly worse. He was rejecting foods, many foods that he used to love. Crying, whining and getting frustrated during meals. Not always, but often. He was coughing more and having a difficult time. It was also very frustrating for me, since I never knew what he would eat, or IF he would eat. Friends on the Gangliosodisis facebook group recommended I get him into a swallow study ASAP.

The swallow study showed that he was aspirating silently, (no coughing, small amounts going straight into the lungs). He aspirated while drinking thickened liquid, so we didn't even try the thinner liquid. He didn't aspirate the applesauce, but did get some into his nasal cavities. As well as the soft breakfast bar we tried. Later that day, he was coughing while eating some food, so I was sure he was aspirating then. Aspirating isn't good and could lead to pneumonia. Getting food and things into the nasal cavities is probably not good either. I'm sure that could lead to an infection. It also explains why he always sounds congested, like a little piggy. Especially at night.

The doctor called later that day and recommended a feeding tube. She said it is paramount that we prevent pneumonia and both Brad and I agreed. We got in to see a surgeon very quickly and scheduled the surgery. The first week after the surgery was very difficult and different. Harder than I expected it to be, but now he is doing well. He is eating small amounts of things by mouth, but definitely no liquids by mouth. About 3/4 of his nutrition is coming from the feeding tube now. I feel much better knowing that he is getting everything he needs.

Right after surgery. 

 I took off his dumb helmet, he wasn't going anywhere. 

 When he slept, it was actually really cute, he kept making sucking motions with his lips. 

 We were in the hospital for 4 days, so we found some Baby Einstein videos that helped pass the time. 

They were able to put a small button in right away, instead of a long temporary tube, so it isn't very obtrusive.  (the white thing is the G-tube button, they also made an incision in the belly button). 

After a few days he felt well enough to go for a walk around the hospital in his wheelchair. 

He is doing much better now.