About sums up our day!
Birk is having an ok day. We have maxed out his dosage of Fentenyl. We will then move to Morphine. In our opinion he is needing more and more pain medication (which they are doing an ok job of keeping him comfortable), but it also scares us that he is requiring more and more and we still have several days before the tube comes out and we remove the sedation.
They are going to start him on some Miralax to avoid constipation. We just want to keep him as comfortable as possible over the next several days.
He has been having periods of extreme discomfort. He will begin kicking his legs and trying to get his arms out of the restraints. He will shift his head from side to side (which is a big no-no as we need him to remain as still as possible and HEAL). This is especially difficult as his parents to watch as we want him to be ok. Some of this lashing out is the medication, some is pain, and some is fear. I think the last 2 are the worst to think about. I hate to think he is scared.
My prayer request is that the Dr.s and nurses can stay on top of the medication for pain and sedation for Birk. The episodes of discomfort are kept to a minumim. We have been asked to participate in a study changing Birk's ventilator's mode to see if he will require less sedation. It is a unique study and we're hoping for positive results (both for Birk and for all children going through this procedure).