The Roller Coaster Ride

After being admitted to ICU, we had quite the wild ride. Michael continued to get weaker until he basically had no movement at all in his extremities. Early Monday morning, the doctors started coming around. I'm pretty sure every doctor in the building came by to see him, but we were warned in the ER about that happening because his disease was so rare. Doctor after doctor came by and listened, poked, probed, and prodded him -- only to tell us they thought it was GBS and start giving the standard explanation of what that is and what it would mean. Then they would start with the worst-case scenarios -- ending up on the ventilator. The good news was that they all said he had a very good chance of recovering fully with time. That is still what they are saying, so we are very thankful for that optimism and prognosis. They also began on the only treatment option we had, which was 5 rounds of IVIG (IV immunoglobulins). That would hopefully slow down the disease, but it can take a couple of weeks for us to know if it worked. 


Tuesday was much of the same. Nurses came in every hour or two to do neuro-checks and respiratory came in constantly to assess his ability to breathe. The doctors continued to stream in too. They began talking about all the long-term possibilities, like putting in a better IV line and more talk of the ventilator. He still seemed to be getting weaker and losing more abilities. Nosebleeds also started because of the blood thinners he was on, but they were pretty scary because it would mostly come out his mouth. It seemed like it was a LOT of blood, but they said it wasn't as much as it looked. This meant we also started seeing an ENT (ear, nose, throat) doctor. 


On Wednesday, he was having a harder time breathing, but his numbers will still good. At this point, he was having a lot of mucus that he needed to cough up but just couldn't do it. We had a very, VERY good Pulmonologist that we really trusted, and he said he thought it was time to consider putting him on the vent voluntarily to avoid an actual emergency. It was very difficult, but we decided it was best because he was struggling so much more to breathe. We decided to do a tracheotomy because the doctor thought that would be best, and he would also need a feeding tube. That was the hardest decision ever!! The doctor told us to get our affairs in order because he would no longer be able to talk with the trach. We asked him how he could communicate because he couldn't move ANYTHING at that point, and he told us it would have to be with blinks -- 1 for yes & 2 for no. They also did a spinal tap that day to try to confirm GBS, which scared Michael too. He did not want to do that, but they said it was important to check. That was the LONGEST day too because we had to wait until 3:30 - 4:00 for the surgeon. After it was all over, he was pretty freaked out and thought it was all a dream. He told the nurse that he wasn't ready to see us because he was so confused about what had happened. They gave him so anxiety medicine to calm down and finally allowed us back. He still does not remember hardly anything from that day. He wasn't knocked out too much because they gave him the "Michael Jackson" drug (the doc's words -- not mine), Propofol, which does not put him in a deep sleep but makes him not remember anything. But I still remember it ALL too well!