Sorry I have not updated since surgery day...but not much has changed. We are truly blessed that Caleb has not really had any major issues since surgery, just the low blood pressure. The only major issue we are having are his wiggles. Apparently, kids with Trisomy 21 have the extra chromosome which can cause them to metabolize some meds quickly, this of course includes narcotics and sedation. So today he was given a different combination of meds to sedate him, rather then the paralytic they were giving him to completely knock him out. He needs to be so sedated b/c it is very risky to let him wiggle and possibly pull on the ventilator or an IV, etc. He is certainly more of a danger to himself when hands and feet start moving. He can not come off the ventilator on the paralytic, so heres hoping he remains stable on the new sedation meds so they can start to wean him off the ventilator tonight/tomorrow. They were talking about trying to remove the breathing tube tomorrow, but there are a lot of things that can cause that to change. His floppy airway is certainly playing a major factor. here's hoping for a perfect extubation! :)
He was moved to a private room today, out of the post-op/shared room he was in, so that is much nicer. It's just nice to have a place to sit down!
Thank you all so much for walking with us on this journey. We have some very rough, long days ahead once he truly is allowed to wake up...how in the world does one entertain a 12 month old in the hospital?!?
Joanna
P.S. I will post a pic of him when it is not so graphic. it is a little hard to see him so buried with IV lines, ventilator, etc. at this point. Not to mention his incision...
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