Progress and frustration

August 7, 2011

It’s been a long week of frustration but also progress.

Progress… Wyatt has been much more stable since the Central Line was put in and his antibiotics were started. He only has a couple more days left on the antibiotics and then we’ll get another culture done to make sure it worked. His secretions are still thick but from what I can tell, they’ve always been like that even before the tracheotomy. Last Friday we interviewed three different home health care agencies and we decided on a local agency that is sort of like a one stop shop. Aside from having experience with CCHS cases and therefore having the knowledge to train our future home health nurses accordingly, this company also has its own Durable Medical Equipment (DME) Company, a pharmacy, and 24/7 Respiratory Therapists (RTs) on call who could be at our house within one hour. Additionally, they offer medical day care if/when I choose to go back to work. Yesterday, the timing was right, too. We received a bill of over $51,000 from the Neonatologist group who has seen Wyatt in June and July. Mind you that number is only the bill for the doctors, not the hospital, specialists, tests, etc. Thankfully, at the same time we received a letter stating Wyatt is approved for Medicaid as of July 8, the day of the application. That made the shock from the bill a little easier. Now I just have to figure out how to make Medicaid retro-active to his birth date.

Frustration… Having done nothing but research and talking to CCHS Specialists and CCHS families, I consider myself very educated about this rare disorder by now. Aside from countless appointments Wyatt will have with countless Specialists after discharge, there are certain tests that need to be done on an at least yearly basis because CCHS children can have other serious complications related to the Autonomic Nervous System (ANS). Trying to get these tests done while still in the NICU though is a whole other story. There is such a lack of communication between the Neonatologists and other Specialists, it is so damn frustrating. And then when I as the parent ask specific questions about CCHS tests and treatments, they act like I’m taking their degree away. I basically have to wave the documentation from the American Thoracic Society in front of them to make the Neonatologists see in writing that I am not just making this all up and Wyatt really does need to be continuously CO2 monitored. Yes, I understand that it is not common practice to send children on a ventilator home with a Co2 Monitor and that those monitors are expensive and therefore insurance companies don’t like to pay for them. But damn it, other kids also don’t have CCHS where high CO2 levels are the main issue and are a daily life or death scenario and where the research backs up the need for such monitors. Yes, I know Wyatt’s heart rate has been continuously monitored during his whole stay in the NICU, 2 Echocardiograms came back normal and a 72Hour Holter Monitoring is expensive. But damn it, several CCHS patients have suddenly died due to undiagnosed r-r intervals with sinus pauses of 3 seconds or longer and a 72Hour Holter Monitoring is the standard for CCHS. So why not do it while Wyatt is still in the NICU for a couple more weeks anyway? Yes, I know Wyatt does not do well with the pacifier. But damn it, neither did any of my other “normal” kids and Wyatt did bottle-feed prior to the ventilator. So why not give him the chance to try and practice again now, even if it is not a determining factor for discharge? Oh let me guess, it’s inconvenient for the hospital schedule because bottle-feeding would mean someone actually has to spend more time with Wyatt while he’s eating instead of just turning on a pump connected to his G-tube… In other words, I get the feeling that the Neonatologist is simply done with Wyatt’s case now that he has a diagnosis and it is clear that there is no cure. Now he just plays the role of the middle man with all the other Specialists and he’s doing a bad job at that… Needless to say, I’m kind of fed up with the bs excuses and I will do whatever I have to in order to get the CO2 Monitor ordered for Wyatt’s home health care, to get the Holter Monitoring scheduled and to practice bottle-feeding with Wyatt again. The time to play nice and attend to the Doctor’s egos is over.