What's been keeping us on our toes is Wynnie these past 2 weeks. He's been fluctuating between having fevers, not having his Airvo (the cadillac of night ventilation equipment) and his bipap from not working. He has tanked so quickly on both of those pieces of equipment that we haven't used either one of them for over 2 weeks and have just kept him on his nasal canula/air concentrator. For 2 pieces of equipment that were supposed to be awesome, they sure have fizzled out. The new respiratory company that has come out 4 times to test it all out keep telling us it's all perfectly fuctional but we keep saying "the machine may 'work' but it's not 'working' if he turns grayish blue when he's on it!!!" So for a 5th time they will be coming out today and I'm sure the chick hates me but at this point I want to make her feel like she's actually earning her pay check instead of acting like we don't know how to use it.
But Wynnie has been a champ and we've been fortunate to have his day nurse, Hilda, who has been intuitive enough to call the hospice for additional support (meds written, equipment ordered) when I've been gone for work or when I've been gone with Ben and Alex.
Last night after 8 PM Wynnie started to struggle quite a bit, his O2 only hovering in the 60s-70's for most of the night (normally when he is nice and happy he stays near upper 90s). Chris and I were working alongside the night nurse from 2 am- 5am with no luck. With his O2 levels being low, his heart was having to work very hard since it wasn't receiving adequate support (his heart rate was fast and his jugular vein was protruding). He probably felt like he had just ran a mile, poor little guy.
After ordering new meds this morning and getting the ball rolling on new equipment, he really started to breathe poorly... dipping down as far as the 20's and 30's and looking pale. It's hard to trouble shoot and play "ER" when Ben and Alex are nervously watching and saying "he's in the 60s! He's in the 50's! Come on Wynnie!" He had a hopeful cheering squad cheering him on while we connected him to the dusty bipap we haven't used in over 2-3 weeks. We had to rig the equipment we already have until new equipment arrives so this is our version of "pulling out the duct tape" and trying to make things work for his oxygenation issues. Thankfully Ben and Alex's cheers, Hilda's help and my reconnecting of old equipment all worked. For the past hour Wynnie has been receiving nasal canula (concentrator) support at 4L plus his bipap which is at 4L thus giving him a rigged up 8L of support. And HALLELUIAH he is now up in the low to mid 90's!!!!!!!!!
Once he got up to the 90's I started bawling because it was like a emotional release. Because if that didn't work we'd have to take him into the hospital and there's really nothing more they can noninvasively do at the hospital that we're not already doing at home. Wynnie knows it... after a few minutes of being stable the little stinker was smiling at Hilda and I through his mask and shaking his rattle.
Please keep the following in your prayers: Wynnie's stabilization back to health, Chris and I's strength & sanity, Ben and Alex's comfort in knowing how awesome they are even when we are tied up with the babies often, wisdom and love for our nurses and caregivers, and patience and wisdom from the doctors and medical supply companies we work with on a daily basis.
Wynnie last night before he started to tank.
Wynnie today after he stabilized and flashed us a smile while playing his maraca.