There isn't much of an update - we still don't have a plan of action for Charlie. Everything is hurry up and get this appointment, wait for everyone to consult with each other, then decide we still don't have any definite answers, so maybe he should see this OTHER specialist as well. We've gotten NO where. This past week we saw pulmonology, infectious diseases, had a sleep study, PT/OT, ST/PT, and had an ER visit. All in three days. What we got from that? ...we need more labs done. We do have a lead, of some sort - his fevers *may* be from TB that is in his bladder/kidneys, instead of his lungs. Maybe. The good news is if it IS the TB, he can probably go ahead with heart surgery. So that's the gist of what's going on. I'll go into more detail below, but you can stop reading here if that's all you wanted to know. :)
To make this as simple as possible, I'll go in the order that he had his appointments.
Sleep Study: Charlie does NOT have sleep apnea. He did have about 10 apnea episodes, but does not qualify for a diagnosis. So, yay. But, his other breathing issues at night are still concerning. At night, Charlie's sats stay lower (91-92% - he is "allowed" to go to 88%) and his carbon dioxide is slightly higher. He's working harder to breathe and not doing it as well. In any other kid, the doctor would have started O2 at night. But since Charlie is supposed to have his heart fixed soon, we're holding off to see if that fixes the problem. Once again, Charlie's numbers were in that iffy wiggle room grey area, so it's not urgent that we do anything, but we certainly need to keep an eye on it and follow up.
Pulmonology: Not many answers here. We had a consult because some of the results from Charlie's heart cath could have indicated something more going on with his lungs that was worth checking out before surgery. The doctor thinks it is most likely due to the pulmonary hypertension. He was more pessimistic about Charlie's surgery, but he didn't have the full cath report in front of him. He was going to consult with the cardiologist and tentatively cleared him.
Infectious diseases: I liked this guy. He actually had some ideas about Charlie's fevers and was more in my line of thinking - test the heck out of Charlie and see if anything shows up. If nothing shows up, then there's nothing holding him back from heart surgery. He ran a bunch of labs, which didn't take into account Charlie's poor history of actually giving us all the samples we need. So we still don't have the answers - we need more labs done. And he's also going to consult with the cardiologist (hello, care conference anyone??). But as a result of those labs, we ended up with a ...
ER visit: So, when they drew Charlie's labs, they included a platelet count. This is supposed to be 100-400. Charlie's came back as 6. His pediatrician called and told us to head to the ER for a recheck. She thought he might have leukemia. It didn't really make sense for his platelets to be 6, because he wasn't pale, had zero bruises, and he didn't bleed all over when they drew labs. In fact, there was a large clot in the tube in the original draw! But we went in anyway, and they drew a ton of labs, which all came back...normal. But hey, Charlie got to visit all his ER friends, who he's getting to know so well! When we go to the hospital, staff who've had Charlie before stop by to say hi because he's just that cute!
So that was the beginning of our week. The rest of the week was a little better, although Charlie has had a fever since Thursday. The docs want "sick" labs from Charlie, but I haven't been able to get him in. I'll call again in the AM, but I think his fever will be gone by then. I hope it is anyway, because in two days we are going on vacation! I am really looking forward to leaving all of this behind for a few days and celebrating one of my favorite people - my Mom!
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