Last night and today have been very challenging for pain control and sedation. Sutton has built up a tolerance to many of the medications we are using because he has a history with using them in the NICU and because of the high doses he has required during this stay in order to achieve any level of comfort. We did finally achieve a good balance after doctors changed the dosing of certain meds and added new ones. Unfortunately, the levels of medication he is requiring make this a (very) short term solution.
Some of the problems we are running into include maintaining the integrity of the graft in his esophagus as well as the tissue flap on the exterior that allows visualization of whether the tissue internally is holding up. Sutton flails about in the bed when he is not well sedated and the movement at his neck could damage these things. It seems some of what he flails about for is pain, but the majority seems to be agitation. After much discussion it was decided some of the agitation could be the result of being intubated. There are inherent risks with remaining intubated if he can be extubated, but if he can't be cooperative then he would need to be sedated in order to protect the graft. And he can't be sedated using the levels of drugs we are currently using without being intubated. We have a catch 22.
The current consensus seems to be that he return to the OR tomorrow to attempt extubation in a controlled environment. They want to visualize his vocal cords because, if they are not moving sufficiently, then extubation will fail. If they are not moving well the doctors will reintubate with a nasotracheal tube (through his nose) instead of the endotracheal tube (through his mouth) in an attempt to reduce agitation and also allow for some of his pre-hospitalization self soothing mechanisms to be utilized (pacifier). This will allow more time for the vocal cords to heal and then they can attempt extubation next week when he goes back to the OR to remove the tissue flap.
Plastic surgery is tentatively looking at next Wednesday for removal of the tissue flap. If he becomes too rambunctious before then and it is no longer safe to have the flap, it will be removed. This would not hurt the integrity of the internal graft, it would just mean that visualization for how well it is healing would be lost.
Today he started a new respiratory treatment and the IPV was discontinued. The new treatment uses vibration through a small tube on the outside of his chest to help keep his lungs in good working order and help cough up secretions. He still doesn't like this treatment much (though he doesn't like much of anything these days) but he is more tolerant of it than he was of the IPV.
I think we are very hopeful for tomorrow. Even if he can't be extubated (which is a very sensitive issue for us due to the psychological trauma of his initial, failed extubation in the NICU) we are hopeful that he will be less agitated with a nasotracheal tube and that a decrease in sedation will allow us to interact with him more. As of right now we just sit at his bedside. He is so highly sensitive that we do not touch him or talk above a whisper unless we are having to hold him down until the next round of boluses kick in.
That has probably been the hardest part for me this time around and I'm sure it hasn't been easy for Kedric either. I can't calm my child in any way and when he tries to express to me that he is in pain or angry, the only thing I can do is hold him down (so he doesn't damage the graft) and pray that this round of boluses will work. I would love to not have to spend the next week like this, for him and for us, so please pray for well functioning vocal cords and a smooth extubation or, at the very least, less agitation for Sutton.
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