About a month ago Seth got another ear infection and it was a bad one so he had to get on drops and antibiotics. Well of course a week later it went to the other ear. He has not had good luck with his ears and I totally thought that the tubes in the ears would help. His doctor explained to me that it does help a lot especially in the area of pain and drainage. The problem we have is Seth really does not complain about things if he is in pain. He probably had the ear infection well over a week before I took him in because he was still snotty and I could not figure out why.
The week of the November 16th Seth had a few appointments that were pretty important. He had a swallow study done, a urologist appointment, and he also saw a gastro doc.
So the swallow study was first and of course it really was not the news that I wanted to hear. They gave him a different levels of thickness and watched on the x-ray how he swallows. The barium that they give him shows up black on the screen so it was pretty cool to watch. Anyways so what happens is when he has very thin stuff (like medicine) he does a really good job pushing it back with his tongue cause there is not much work involved but he does not have all the muscle control to move and swallow all at the same time so it actually pools in the back of his throat right where the flap closes off the lungs when you go and swallow so you do not aspirate. Well since it pools right there he tries and swallows and then the flap closes so some splashes into his lungs. Not all of it goes in there so it is not called full penetration but rather a "splash" (This can be the reason he gets so many respiratory infections and also the problem with his ear infections) The thicker foods he was not able to work his tongue very well so it took him a long time to try and get it down his throat but he did a lot better a swallowing it and none went into his lungs. So that was a good thing but the problem we are having is that there is not much we can do in this area, basically we wait and let him develop and in the meantime we have to start thickening his bottle. We have already had one bad time when we know for a fact that he aspirated because he was not breathing and trying to cough and couldn't but finally started to cough and he coughed for about 20 minutes until he threw-up whatever the medicine was and a lot of mucus. That kind of stuff scares me and it is the worst with medicine and that is the most important thing for him right now. The worst medicine we have to give him is his sabril and that is simply because it is 15ml morning and night and it literally takes us 15-20 minutes to give it to him and he at least chokes 2 times.
I took him for a 6 week check up after his surgery and they did an ultrasound and then met with us after to check his incision and talk to us about the results. The right side (grade 4) was completely back to normal and completely perfect. The left side (grade 5) was still swollen and not quite back to normal yet and he said this could take a while so we have to keep him on his antibiotics and come back in 3 months for another ultrasound. He said that after a surgery like that he expects swelling and he used an example of if you blow up a balloon and release the air it take a while for the balloon to go back to its original size, he said that is the same thing with Seth's kidney. He also said with how bad it reflux was it might take a while. He said they only grade kidney reflux to a 5 if he could really pick what Seth's was he said it would have been a 12. I asked if there was any kidney damage and he said none on the right side but the left side could have quite a bit of scaring but everything should be fine.
We had a gastro appt the following day and we got thickening gel for his bottles so that he does not aspirate into his lungs and also they mentioned a feeding tube which I really do not want. I have been trying really hard to avoid that and since he is taking in some solids I am praying we can hold off in that area. He will go back in two months and then we will discuss the feeding tube again depending on his weight and what he is actually getting calorie wise. The doc has us increasing his formula and pediasure intake to 8 ounces every feeding to try and get him up to 1000 calories a day but it is really hard to force him to eat that many ounces a feeding. He normally can take 7 but sometimes he goes as little as 4 so it is a tough thing to do.
We also were able to go and get his AFO's which can be a pain to put on. He is suppose to wear them all the time except for sleeping. I have been slacking in the area of working him up to all day but we are getting there and he seems to not mind them at all.
He also got a hair cut finally and let me just tell you it is so adorable!