Still Getting Better

Today was a big day for Bobby. He had his bronchoscopy this afternoon to check to see if his airways and lungs have healed from his multiple intubations. And, the news was universally good. The damage is all but gone. He has no scarring on his vocal cords, meaning no surgery to correct tht in the future. He has no acid reflux damage, meaning that we won't need to get the gastric tube before we can go home. And, he got through the procedure without being intubated, meaning we avoid a setback in his recovery.

Now, we go about weaning him off of his oxygen support. After the bronchoscopy they got rid of his high flow. This is a special machine that, along with giving oxygen help, puts some positive pressure into his lungs. Essentially, it helps force some of the oxygen in. Bobby needs to be off of that before we can leave the hospital. So far, he's done quite well, His sats are in the high 70s, a bit lower than they were on the high flow, but that's to be expected.

Starting tomorrow they will work on weaning him off of the oxygen itself. We still don't know for sure if he will need oxygen when he goes home. At this point, it's something we'd willingly take on. My guess, based on nothing much, is that he'll need oxygen at night but will be OK during the day.

We will also go home on round the clock continuous feeds. He has an nj tube still - that's the tube that goes through his nose down to his small intestine. Continuous feeds are a pain because you have to constantly carry around the pump. If he pulls the tube out, we have to go to the emergency room to get it replaced. But, it is so nice to have a boy who doesn't throw up several times a day. It's really really nice. I mentioned to Nanny Beth today that Bobby seems gigglier now than even before the surgery. Her thoughts? "He's not throwing up all the time." Duh. So this is an issue that will need resolving sooner or later. We still might go to a g-tube. But at least we can take the time to consider our options instead of rushing to do this before we leave the hospital.

Another outstanding issue is that Bobby needs a hearing test. The test has to be done while he is sedated, which is obviously a bit tricky. The ENT wanted to do the test today, but after talking things through, the anesthesiologist questioned adding that procedure to the bronch. The bronch itself takes about 10 minutes, but Bobby needs to be heavily sedated and paralyzed during the procedure. Extending the anesthetic for the hearing test, which takes about an hour and a half, would mean almost certain intubation. If we come back to do the test in a few weeks, he'll still have to be sedated, but with much lighter medication that will not require him to have a breathing tube. Confusing? It was very confusing as the ENT, anesthesiologist, surgery APN, nurse, and Valerie and I hashed it out minutes before the procedure. The ENT felt like we were negating the importance of the hearing test; I was questioning why we were doing the bronch when the ENT said that there would be noticeable symptoms if the airway was causing the low saturations; the APN was disagreeing with that; Valerie and I disagreed about whether to do the hearing test, etc. So goes the parenting of a medically complex child.

Speaking of which, the ENT really ticked us off today. He kept saying that Bobby should have had a hearing test 4 months ago so that he could have had a hearing aid if necessary. First of all, Valerie tried multiple times to get him tested. Bobby failed two outpatient hearing tests attempted, and she went back and forth between audiology and ENT visits to resolve the issues, including his ear canals were too small for the test; he had wax build up; he needed ear tubes, etc. Second, hearing is obviously important. But there is a hierarchy of medical needs and a bad heart is number one on Bobby's list. Number two is throwing up several times a day. Number 3, hearing and sight. It really, really ticks me off to have this doctor judging us. Bobby has been in the hospital for over a fifth of his life. He passed the newborn hearing test. He very obviously hears us talking and hears music. So we made a decision not to aggressively pursue ears and eyes stuff until the heart condition was resolved. I understand that the doctor probably feels like we don't appreciate the importance of his specialty. I don't think he understands the challenges of parenting Bobby. (This is where I really would like to spend a few lines cursing, but I like this blog to be a family affair. Plus my mama told me once that only people who lack imaginations need to use curse words).

And anyway, did I mention that the bronch went really well today?