Well today was a busy day. We had two appointments at the hospital today, a swallow study and an ENT appointment.
Lil Bill has had issues with aspiration in the past. They were first discovered during a FEES study while impatient at CHOP. We went home from Chop with a NG tube for feeding and just like that routine tube feedings became apart of our daily lives. Another part of our 'new normal'. A repeat FEES study a month later showed no aspiration, so we were able to start reintroducing the bottle. We were making progress, we made it up to an ounce by bottle for every feed and introduced baby oatmeal.
This scheduled changed two weeks ago. Lil Bill was admitted to A.I. hospital for pneumonia and two viral infections. They do not know what caused the pneumonia, aspiration or the viral infections, both are likely possibilities. So we were sent home from A.I with an NJ tube on 18 hour continuous feeds.
What is a NJ tube? Glad you asked. An NJ tube goes through the nose and down the throat, just like a NG tube does. But the NG tube goes into the stomach while the NJ tube goes through the stomach and into the jejunal. They made this our new feeding plan until the swallow study and they we would come up with a new plan. They did this because it is much less likely to re flux from the jejunal as opposed to the stomach. And if Lil Bill is aspirating then he would aspirate on his re flux, making him sicker. So we got this new feeding plan and went on vacation to upstate NY to see family. What better way to get used to something then travel with it right?
Anyhow, the swallow study today was actually pretty cool to watch. They took an XRAY video of him drinking a bottle and eating apple sauce. To my surprise the study showed no aspiration! I was literally shocked and still kind of am because I expected the results to be different. Way to go little man! Now the frustrating parts comes from trying to find a doctor who will manage our tube feedings. Now since he can eat safely, its a very slow process getting to the point of no tube, we need someone to help us decide when we can pull the NJ tube and go to NG tube. We were referred to three different doctors today to help with that. Getting a hold of them will be my project for the rest of the week.
We then went to our ENT appointment. We were there because of the results of the sleep study Lil Bill had. The sleep study showed Lil Bill stops breathing for 10 seconds at a time at night, 24 times an hour. They consider these brief moments but are concerned that he is not getting enough rest to heal and grow. Our pulmonary doctor wanted ENT to take a look to see if it was worth taking out his tonsils to help the problem. ENT felt that it would not be worth doing that because Lil Bill's tonsils are small. Anther option could be to stitch open Lil Bill's vocal cord.
Lil Bill has left vocal cord paralysis from the PDA ligation surgery he got when he was 2 weeks old. It was a risk of doing the surgery but without the surgery he probably would not of survived so the benefits definitely outweighed the risks there. Because his vocal cord is paralyzed he has trouble swallowing, hence all the feeding tube talk. So if ENT stitched open the other vocal cord it will most likely cause even more trouble for swallowing for Lil Bill. The doctor, Billy, and I all agreed that we did not think it was worth it.
So they left us with one likely solution. It hasn't been officially confirmed but Lil Bill will most likely be put on C PAP overnights while he is sleeping. I asked the doctor if he will grow out of this. I feel like by now I should know better then to ask those questions. The answer is always 'I don't know, could get better, could get worse.' Thats the most frustrating part about all this medical stuff, there are no definite answers or outcomes to offer, ever.
We also found out that Lil Bill's hearing aids have arrived, but for some reason they are not able to schedule us for a fitting for them. We made a couple calls about this today with no results, so this too will be another project for the rest of the week.
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