Friday, August 24, 2012
There was more adjusting to Puffs settings last might and it worked to bring down Danny's CO2 levels. It works so well that he is now too low, lol. So there was two more adjustments made this morning and now we to see how Danny reacts to them. They were in at 2 to draw another blood gas on Danny. If it's in more of a normal range then we get to bust out of here :). There will be a lot to do at home, but its so worth it to be there instead of 100 miles in the hospital away from my family. It definitely helps that we have a capnography monitor (shows the amount of co2 he's blowing out of the trache or, entitle as they call it) at home. It was pretty comical watching most of the medical staff drop their jaws when I said we had one on the home as they are normally only in the hospital setting. Danny is NOT breathing on his own right now. I think all of the CO2 fluctuation and his extereme lethargy has suppressed his drive to breath :(. I hope in time he'll be able to be off the vent while awake, but for now Puff and Danny will be BFF's. in talking with the Pulm Dr i was made aware he might just be on Puff from now on. It's not the Danny's lungs are bad it's his drive to breath. So instead of damaging the lung ability/function they are thinking of just giving his body what it needs and that might be being on Puff indefinitely. Another hard pill to swallow, but as I always say.... As long as Danny is still there and fighting I will continue to fight for what he needs. And if he need to be on Puff to stay healthy and comfortable ..... So be it! Danny also is not peeing on his own. He's producing but not letting it out. So he needs to be Cathed every 8 hrs or we'll need to put a foley back in. A foley is a cath thats in all the time and it drains into a bag. We ended up taking the foley out yesterday as his Lil petergetter started bleeding :(. So I'm not quite sure what we are going to do if this is going to be a long tm thing. Most of Danny's blood levels have returned on their own, YAY! And the mystery saga continues......the generic labs that were done for an auto Immune disorder are all coming back negative. There are just a couple left out there but it's looking like he doesn't have Lupus. I'm so happy, but i'm not going to jump for joy till all of them come back. The test for the Lupus anticoagulant which he has tested positive for before has also come back negative so they no longer can use that excuse for his high PTT (clotting factor). Which makes things alil more frustrating as there is now no reason for those tone off other then the - BECAUSE IT'S DANNY - excuse. Sigh! I'm glad all these things are going getting rules out, but come on! Only my son can do all of this craziness with NO REASON. This morning I was able to have a nice chat with Danny's ortho surgeon and the decision has been made to fuse his back along with replacing the baclofen Pump in January. This will be his longest surgery EVER. The ortho said about 10 hrs, YIKES! There will also be a lot of blood loss that will require blood products. My anxiety is already UP :(. I'm hoping that this will improve his quality of life in the long run with illiminating lots of multiple surgeries down the road. After this BIG one he won't have a scheduled surgery for another 7yrs when the pump needs to be replaced again. The CO2 levels just came back great! I will be pushing for those discharged papers ASAP!