Such a lovely morning. We both went in today, armed with several pieces of… wait for it… clothing! Yes, he’s allowed to be dressed, now that he’s in the big bed. Most of the pieces we have were too big, but this one (thanks Mrs Edwards) is the best fit.
Before that, though, he had a bath – yes a real bath. He was a big squirmy, but I didn’t drop him, and he was very well behaved throughout. Mark videoed the whole event – first film we have of Max since last November. Max stayed off CPAP the whole time, then we put him on low-flow and I got a cuddle, for another hour before he started getting a little tired. So overall, about 2 hours off CPAP.
His surgery is set for Monday. He’ll have to be re-intubated, and will stay ventilated for 2-3 days afterwards. Obviously he’ll be in some pain after surgery, so the morphine comes back into play, which may affect his breathing. I’m actually very nervous about it all. I know I was pushing for it to happen, but the process sounds very scary and very traumatic. He’ll have a blood transfusion (mine, probably) on Friday to prepare for the surgery. The operation itself will take a few hours, and will only be for his bowel, not the hernias as well. They’ll come later!
Yesterday his oral feeds were upped to 7ml per hour (and 1ml TPN + 1ml lipids per hour), so total volume remains the same, just an extra millilitre orally. His stoma losses were about the same, though, so he’s digesting more. Weight (from yesterday) is now 2230g.
Very nice day. Well done, Max.
Before that, though, he had a bath – yes a real bath. He was a big squirmy, but I didn’t drop him, and he was very well behaved throughout. Mark videoed the whole event – first film we have of Max since last November. Max stayed off CPAP the whole time, then we put him on low-flow and I got a cuddle, for another hour before he started getting a little tired. So overall, about 2 hours off CPAP.
His surgery is set for Monday. He’ll have to be re-intubated, and will stay ventilated for 2-3 days afterwards. Obviously he’ll be in some pain after surgery, so the morphine comes back into play, which may affect his breathing. I’m actually very nervous about it all. I know I was pushing for it to happen, but the process sounds very scary and very traumatic. He’ll have a blood transfusion (mine, probably) on Friday to prepare for the surgery. The operation itself will take a few hours, and will only be for his bowel, not the hernias as well. They’ll come later!
Yesterday his oral feeds were upped to 7ml per hour (and 1ml TPN + 1ml lipids per hour), so total volume remains the same, just an extra millilitre orally. His stoma losses were about the same, though, so he’s digesting more. Weight (from yesterday) is now 2230g.
Very nice day. Well done, Max.
1 comment:
Love the account of little Max's life struggles. Our prayers are with him and You the parents.I log on every night just to see if all is well,Keep up the good work (Kitcha)From Baba Anolak
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