Alisha and I have cried a lot today. It is an awful feeling to know that your son will die, but to be unable to hold him, make him laugh, or explain to him (or yourself) why this is all happening. We have alternated between sobbing uncontrollably to speaking very openly and candidly about his condition. There is still a glimmer of hope, but as of now it is just a twinkle.
The good signs are that since the last blog post, Roscoe has been more tolerant of touch than he was yesterday. His oxygen came back up to the low 90's and aside from one large drop down to 10 which lasted 7-8 minutes, he has been stable. His heart rate stayed high (160-170) for most of the day because he was on albuterol (which is used for asthma) to expand his breathing system. A side effect of albuterol is an increased heart rate.
Alisha and I had a very hard discussion about whether we wanted to turn off his paralytic drugs. On one hand, the paralytic drugs were keeping him immobilized to minimize the chance of triggering his pulmonary hypertension. On the other hand, if he is going to go, then we want to be able to say goodbye to him face to face, with his eyes looking knowingly back into ours. We had a hard time making the decision, but we finally settled on turning off the paralytics. I went downstairs to inform the doctors. The doctors had told me that once we headed down this road, we wouldn't go back and re-paralyze him. If Roscoe didn't tolerate it, then that would be the end.
When I got to the room, I didn't find the doctor, but I talked to one of his regular nurses (Rena). Before I could tell her what we had decided, she told me that she didn't think Roscoe was ready. She told us that when Roscoe was ready, he would let us know. The fact that his oxygen was doing better and that he recovered (albeit very slowly) after suctioning the mucus from his lungs told her that he still had fight left in him. God was watching.
I didn't tell the doctor what we had decided, and so now having doubts I went outside to tell Alisha. We said that we wished we didn't have to make a decision like this about our son. We figured that we'd really regret it if we did pull the trigger, and then wondered if he would have lived on. We went and got lunch, then came back to our room to eat it. We prayed sorrowfully.
Then the room phone rang a few minutes later. It was the doctor that I had missed earlier. The doctor said that he didn't know what we had decided about the paralytics, but he had made the decision to start weaning Roscoe off of them. We never had to make the decision.
The doctor said that it was a combination of factors, good and bad, which led him to his conclusion. The bad signs were that Roscoe had developed a bedsore on the back of his head and had stopped receiving feedings. The good signs were that Roscoe's oxygenation had stayed high for the past several hours and that he was seeming more tolerant of being touched. I dont think it was a coincidence that this happened, since this blog has been viewed thousands of times today and people all over the world have prayed unanimously in support of Roscoe.
The doctor restarted feedings and reduced the paralytics by 40%. When I went to see Roscoe 30 minutes ago, he tolerated some adjustments and let me hold his hand (still lifeless). I even saw his shoulder twitch a few times and his tongue move once in his mouth, as a sign that his nerve endings were returning to function. The doctor also discontinued the albuterol treatments every two hours, so Roscoe's heart rate came back down to the 120-130 range. It will undoubtedly climb again, but I was happy to see such numbers.
Alisha and I will be staying here at the hospital overnight again, hopefully posting more good news. The situation is still very terrifying, because if Roscoe's cold is subsiding he still needs to recover from surgeries, painkillers, pulmonary hypertension flare ups, and any damage that all of this has done to his heart or brain.
We are at a loss of words for what to say to all of you for your words and prayers of support, and we are at a loss of what to say to God for what we hope is a response. Roscoe is still very much in danger and may not survive, but we have a glimmer of hope.