almost home bound

August 24, 2011

My apologies for the delay in updates. After four weekends of continuous construction, we are finally done with Wyatt’s new downstairs bedroom. He probably has the best room in the house now. Putting up walls and doors, and installing lighting and wood flooring from 8am to 10pm Friday through Sunday for four weekends in a row...let's just say, we're glad it's done. We’re still moving in furniture and decorating but the manual labor is done. A huge THANK YOU to everyone who helped out with this big project!!!

To sum up the last week, I play phone tag daily to make sure people are not dragging their feet because Wyatt is officially ready to be discharged!... Hold your cheers though. We’re still waiting on home nursing approval from Medicaid - hence the daily phone tag. Wyatt was finally switched to the home ventilator last Thursday and he has been adjusting really well without complications. From a medical standpoint, he’s no longer fighting bacteria in his trach (although they’ll always be in his trach to some degree) and he’s now cleared to go home. We’ll get our 4 hour long medical equipment training this Friday morning at our house and all medical supplies will be delivered. Then in the afternoon we have to head up to the hospital to do our second trach change. I did one on the 19^th so now my husband has to do one. And then we’ll stay the night at the hospital to room-in with Wyatt. It’ll kind of be like a practice run of us taking care of him all night by ourselves with the nurses only coming in if needed. That’s all we have left to do from our end before discharge. The only thing we’re waiting on now is for Medicaid approval of the requested 24hour home nursing care. It’s kind of like rolling dice; there are no guarantees how many hours they’ll approve. And the way things have been going, I’m ready to fight if needed. Wyatt is 24hour ventilator dependent and has several daily blue spells where he holds his breath until he passes out (part of CCHS). During those spells, there is nothing you can do but wait for him to come out of it. Not even the ventilator can breathe for him at that time because he completely claps down his airway, cramps up his whole body and turns dark blue. Once he finally takes a breath again and his body relaxes because he passes out, that's when we can give him extra O2 if needed so he recovers faster and brings his O2Sats back up. I’ve seen it often enough now that I don’t panic anymore but it’s still scary and those blue spells can happen at any time for no apparent reason. That’s why we really need 24hour nursing. I hope we get an answer by this Friday so Monday’s tentative discharge date won’t need to be pushed back. Another road block we’re running into is that the Pulse Oximeter and CO2 Monitor are not covered by insurance. We’re still trying to fight for it but it’s another one of those uphill battles. The American Thoracic Society clearly states that for CCHS patients both monitors are necessary to have an objective way of measuring O2 and CO2 levels since CCHS patients lack the ability to recognize or respond to low oxygenation and/or high carbon dioxide levels in the blood. However, because most patients on ventilators do not need a CO2 Monitor, our request for one is not considered “the standard” by insurance. I can’t tell how tired I am of hearing that word, the standard. My apologies that our child’s needs do not fit “the standard” according to insurance rules and regulations. He is not the usual ventilator case. He will not be able to wean off the ventilator over time. He will not be able to tell us when his O2Sats drop and/or his CO2 rises. And most importantly, O2Sats and CO2 level do not go hand in hand. His O2Sats could be perfectly fine but his CO2 is still high and requires intervention, which is very common for CCHS especially during sleep and could even be an early indication of upcoming sickness or injection. Without a monitor, we have no way of knowing when that is the case though. So yes, our son does not fit “the standard” but his needs still need to be met… This constant fight is so exhausting. Maybe my German stubbornness and expertise on bureaucracy will pay off - at least that’s what I’m hoping for. Maybe if I get on their nerves long enough by calling them back every single day, they’ll eventually give in just to get rid of me. I must say though, our insurance discharge case manager is awesome and tirelessly working on it. I hope she can pull some stings.

On another note though, school is back in session for my two oldest boys and I must say, it’s nice to have a little bit of a routine again. Wyatt is not home yet so I still have to drive back and forth to the hospital but it’s more of a set daily routine now again. My oldest two boys were so ready to go back to school and see their friends. All summer long it’s been all about what’s going on at the hospital and they also went through some rough emotional roller coaster rides. They often got angry (and still do sometimes) when it hit them that they didn’t get to spend the summer with their baby brother or didn’t get to do all the fun things with us like they had planned. It breaks my heart to know that we couldn’t protect them from also going through all this worry and stress. We have a good support system that took over and provided them with as much fun as possible this summer but we as their parents were rarely ever home. And even when we were home, there were the phone tags, emails and home construction going on. Our kids needed to be able to just be kids again and school is providing that for them. Plus, I now get to spend quality time alone with my 2 year old at home again and catch up on some snuggles from him. Every now and then I get lost in the moment watching my 2 year old breathe when he’s napping as if trying to make up for what Wyatt can’t do. It’s bittersweet and makes me cry sometimes. The moments when your baby or toddler is just drifting off to sleep in your arms is supposed to be so precious and comforting. For Wyatt the most dangerous time is right when he’s falling asleep and also while he’s sleeping. It’s hard to not get lost in wishing how things should have been. But I’m confident that we’ll figure out how to get snuggle times with Wyatt, too even if he has equipment in tow. His smile alone just makes it all go away; I don’t even see the trach and the ventilator then. I want him to grow up knowing that he’s not defined by CCHS. He can still accomplish anything he sets his mind to. There are no limits for him, he has to know that – we all do!!!