Oops, its kind of been 8 months since I posted about Nathaniel. But no news is good news, right?
We are established with new doctors here in Florida. We started out with pulmonology. Reason #1, is because that seemed to be the doctor we saw the most. That’s who I called when Nathaniel was sick, and we generally did not go more than 3 months without seeing him. Reason #2 is because our previous pulmonologist knew of a pediatric pulmonologist in the Orlando area! What are the odds, I thought. But, as he put it, there are not that many pediatric pulmonologists in the country, and I know all of them.
So we were off to Dr. Livingston. Personality-wise he is the opposite of our last doctor. He is friendly and talkative! We liked him, and later he was highly recommended by the mom of another of his patients. Because Nathaniel is getting older and doing better breathing in general, we are seeing him less. Next week will only be the third time. That’s good news! He did have us do a sleep study to evaluate Nathaniel’s oxygen needs at night. Those are always joyful, trying to sleep normally with 1200 wires stuck to you. Nathaniel happened to be on the verge of a cold and I should have cancelled it, but didn’t, so he basically needed suctioning from me all night, and then the next day I got sick. But that was back in October, so I’m over it. But of course now some things have changed and we will be doing a new sleep study soon. Looking forward to it (not).
Dr. Livingston is associated with Nemours children’s hospital, so he linked us to other doctors there. First we went to ENT, Dr. Pritchett. He has kind of become our main doctor right now. I really like this doctor, I like how he just looks at Nathaniel and thinks. He asks lots of clarifying questions and does a lot of explaining. He wanted to check out everything for himself with Nathaniel. We had been waiting for Nathaniel’s ear tubes to fall out, so they could be replaced and also have a broncoscopy. The tubes had been in nearly 3 years already, so Dr. Pritchett scheduled us to just have them replaced and do the broncoscopy. We had that in December, and also Nathaniel’s tonsils were removed.
Here is Nathaniel before that surgery. Children’s hospitals are the best, they really do make it awesome for kids. This is while we waited before the surgery.
Nathaniel was out the door and down the hallway before I could get him!
He seems to be using less oxygen at night since the tonsils were removed. They were also going to take out the adenoids, but those are apparently reached through the nose. And Nathaniel’s nose is blocked (choanal atresia), so they literally could not get through to the adenoids. On June 1st, Dr. Pritchett did surgery to open the nasal canals. This was a big deal, its hard to see your child bleeding, and also suck blood out of their nose and trach. But it went well, and just this week Nathaniel was back in the OR to have the nose checked. Looks good so far, still open. He is not breathing out of his nose purposefully, but we can tell air is passing, particularly on the way out when he coughs.
This is his “Mom, they are making me wear a dress” look. I think the little kid hospital gowns are adorable, but Nathaniel is not fooled. As soon as he was awake and settled in a room after surgery, he signed “dress off”!
After the choanal atresia repair surgery. We kept a bandage over his nose for almost 2 weeks, there was goopy stuff coming out. Also he had to have nose drops 3 times a day. Someone asked how he tolerated all of this. Extremely well!! Nathaniel is just such a trooper. He would lay down and tilt his head back when I said time for nose drops. And then request a bandage. He still sometimes wants me to tape gauze over his nose.
Dr. Pritchett talks about decanulation (taking out the trach) and what we need to do. There is a lot to be done and it may never happen, but he is going step by step to see what we can find out. I like that.
We also got a GI doctor, audiologist, and geneticist, but not really any new developments with them. Even so, it is good to have a doctor to call if we have an issue. And of course, we will periodically get new ear molds for hearing aids, and hearing tests.
All of our boys have loved vests, and wanted to wear multiple vests at a time. Not sure where that came from!