Time to call in that favor

What a slap in the face.

Yesterday we were disappointed that Max didn't get extubated, his Co2 numbers had gone up a fair bit, so the plan was to hold off until today. We went in last night to say goodnight, and were met with the very happy surprise of getting to hold Max. The nurse said since he was getting extubated tomorrow (today), that it would be alright if we were comfortable. I hate that this post isn't just a silly sappy happy post all about that. Jordan will post those happy pictures later, but there's lots of news to share for now...

I held Max for a bit (best feeling of my entire life, long awaited), and then the nurse took him and Jordan traded places with me. Once settled in, Max just couldn't calm down and get settled, which was weird because he was totally peaceful with me. The nurse and respiratory therapist could see he was struggling a bit, so they raised his oxygen up a bit, and tried to make him comfortable. He was sweating bullets and gagging and getting a bit pale, so they had to take him back for his safety. (I felt badly that Jordan didn't get a better run with it) They figured he got a mucus blockage in his tube which isn't a biggie.

Once back on his bed, it became quickly apparent that he had major build-up in his lungs, so they tried many times to suction him out. (Inside his breathing tube, there is an inner tube that can be slid down into his lungs to suck out fluids) This is a normal process, they do it a lot, and Max has been hacking up a lot of mucus the past few days, so they thought he just had a big large "hunk" in there that got knocked loose from being passed around. That DID happen, but turned out not to be the main issue, sort of a symptom, signal, or side effect of what's next. The doctors guaranteed us that it wasn't our fault from holding him, not technically at least. Whenever he was moved it would have happened, but you can't help but feel at fault when you ARE the "literal" cause at that moment, whether or not it would've come to pass regardless.

They couldn't get him stable on the vent, and his blood saturation (sat, from here on), was terribly low in the 40's for a while. The sat is just how much oxygen is flowing properly throughout his whole body, from toes to head. He is normally at a perfect 100, and below 70 is poor. They detached the vent and "bagged him" with a hand pump, so that they could flush saline in and suck it out, while controlling his breaths better. They paged Dr. Kays at this point, seeing that he was worsening.

They called for an X-ray, and saw that his left lung (the "bad" one) is completely "whited out" as they say. After not being sure for a bit, they learned that it was full of blood completely, and his left lung is 80% full of blood also, so he was not getting oxygen through his lungs really, mostly through the machine assistance. The cause is not clear, they just know that it had probably been happening all day, coming to a head when he was moved around.

His cerebral sat monitor (the little forehead monitor you've seen) was not on his head yesterday because he was going to be extubated. His nurse jumped the gun by removing that, it was against Dr. Kays directions. Because of that, we don't have stats from a monitor on what happened to his brain activity during this episode, and Dr. Kays said we can't know if he suffered any brain damage during the trauma of stabilizing. Also his lungs are damaged from this; they can heal, but it's a tougher road.

Dr. Kays put him on an oscillating ventilator rather than his regular one, because it is specifically "good at" keeping the lungs open and maximizing oxygen intake. It sounds like an engine running, and it makes his chest and body kind of vibrate. :( This is a step to try to avoid ECMO, the heart and lung bypass machine, which is a very serious step. They are also keeping his body temperature cool, to help protect his brain. Dr. Kays said that studies have proven it can help lessen and/or prevent brain damage when cooler.

Jordan and I stayed through the night in the NICU3, and did sleep in a waiting room for about 2 1/2 hours. When we woke up a bit ago to check on Max, but he is no better. They said that he is stabilized, but not improving yet. His Co2 is at 125 (normally around 55, above 70 is bad), and his oxygen is fine because they are feeding it to him. His lungs are still full of blood, and they sedated and lightly paralyzed him so that he would rest. He was really squirming, fighting and crying for a while last night.

So, he basically crashed hard last night. Thank God he wasn't extubated yesterday, because if he hadn't had the tube already, he may have died last night.

We are at the Ronald McDonald House now. We are both kind of delirious, so we're going to sleep (try) for a bit before going back, and we can't touch him, so it's best just to let him be for now.

Obviously, please be praying for Max. Not just saying "we're praying for you", please really stop and pray. Call in that favor with God you've been saving, Max needs it more than us right now.
I'm just totally devastated, and just now kinda feeling all this. I guess we wont take progress for granted anymore. We will keep this updated when anything changes, and thank you for the true support and concern. Thanks for understanding if you don't hear back from voice mails or emails for a time.

Thanks,
Claire