Becoming a CCHS Expert

August 11, 2011

It’s been busy around here. The closet has been build, doors have been hung and drywall was put up in Wyatt’s new downstairs bedroom. There is still a lot to be done but it’s looking like a room by now. We still have to smooth out the walls, texture them and then paint them, plus we still have to put in the wood flooring. But hopefully we’ll get it all done in the next couple of weekends before school starts again August 22^nd.

On the hospital side of things, tensions have definitely been running high between me and the Neonatologist. He’s very reluctant to my input and requests and his standard answers are “that’s not a priority for discharge” or “I’m worried you’ll have too much information”. I guess he prefers parents who just sit back and let him run the show. Well, that’s not going to happen. I am making myself an expert on CCHS with the latest research and medical advances, and I increasingly get the feeling that the Neonatologist is getting annoyed by me asking specific questions to which he doesn’t have answers. He has not even followed my request to speak with a CCHS Specialist with whom I have already made contact via email and who has offered to consult on Wyatt’s case. But after a meeting with Pulmonology yesterday, I finally seem to be getting somewhere. They now put in the order for a CO2Monitor which is the established standard for optimal care for CCHS, and they now spoke with the Neonatologist to consult with Cardiology about a 72Hour Holter Monitoring. Long story short, CCHS patients are at increased risk for other Autonomic Nervous System Dysfunctions.  One of those problems are Cardiac issues related to prolonged r-r intervals with sinus pauses of 3 seconds or longer which if present would required a cardiac pacemaker. If undetected, it could lead to sudden death. Typically these problems are seen later in childhood but it is recommended to start yearly or even semi-annual 72Hour Holter Monitoring as soon as possible to have a baseline for future monitoring. Despite me giving him the research and recommendations established by the American Thoracic Society regarding CCHS, our Neonatologist has not looked at them and has been more than reluctant to do this test while Wyatt is still expected to remain in the NICU for at least another two weeks. Needless to say, I went behind his back and got other people involved which ended in the face to face meeting with Pulmonology yesterday. Hopefully their input will be enough to get things going but if not, I’m prepared to go up higher on the ladder. You’d think he’d like parents that actually care and take an active part in the treatment of their child. Oh well, I’m done arguing with him. I’ll just keep stirring up trouble until I find somebody who’s willing to listen and take this opportunity to learn about such a rare genetic disorder. Thankfully, I can pick my own team of doctors after discharge. Me bugging him every chance I get though has finally let him to agree that Occupational Therapy can now try bottle-feeding with Wyatt once a day instead of taking the easy way out and just turning on a pump and using the G-tube. It’s going to be a long process to get Wyatt to relearn to bottle-feed but now he finally has the chance to practice. He swallows in big gulps, has a strong gag reflex (understandable after having a tube down his throat for over a month), and he more so chews on the bottle than sucking but I’m hopeful we’ll get there slowly with practice… We’re still waiting on the home ventilator to be delivered to the hospital. The latest I heard was that it should arrive today. Once the Pulmonologist gives the ok, Wyatt will switch to the home ventilator and it is expected that it’ll take about a week for him to get used to it and to fine tune the ventilator settings, as the home vent does work differently than the hospital vent. This Saturday we’ll be taking our CPR class (and rushing to finish the bedroom of course). Hopefully by next weekend we can get our ventilator training and stay overnight with Wyatt at the hospital as a trial run of us taking care of him. And then it’s a matter of lining up the home health care nurses and all follow-up appointments. Realistically speaking, at the absolute earliest, we’d be looking at the week of August 22^nd

for possible discharge. That’s of course assuming, we don’t have any more arguments with doctors and all insurance matters get taken care of. The insurance story is a whole other issue which I don’t want to go into right now. I’m just keeping my fingers crossed that we can keep the financial impact to a minimum.

Well, that about sums up my running around for the past week. To bring it all back into perspective though, Wyatt is doing awesome. He’s done with his antibiotics and the central line was removed. He’s acting like himself again, holding his breath and turning purple every now and then still when he gets mad, and he even managed to poop sideways out of his diaper yesterday. It was lovely and kind of hilarious.