Hopkins - Post-Op Day Seven

Today marks one week since Max's surgery. Many things have gone right, many have gone wrong. After seven days we should no longer be in the PICU but rather "out on the floor" in a regular room. But Max has always followed his own plan and this is no exception. Today his plan included getting his breathing tube out!!

This morning the Attending doctor came to Max's bed very early, before rounds, to tell me that the AM x-ray looked very good. To quote her, "This is as good as it gets." Their plan was to extubate right after rounds early this morning. Their plan, not Max's. Shortly after the doctor's visit Max had had enough and attempted once again to push the tube out on his own with his tongue. This sent him off into a mini panic attack but not quite as bad as yesterday's. Because there were several other PICU emergencies (in the last 24 hours there have been several very sick children, please pray for them and their families) none of the doctors were able to get to Max's bed to get the tube out and thus the nurses had to sedate him again. Obviously a sedated child cannot be extubated so we were back to waiting. This last week there has been too much waiting especially for some very impatient parents but in the end I guess good things really do come to those who wait.

Once Max started to wake up this afternoon I walked the halls and rounded up the doctors myself, I have not felt the nurses' love for this lack of respect for the PICU rules and pecking order but this isn't a Miss Congeniality contest and I wasn't looking to make friends but rather do what's best for my son. Parenting a chronically ill child is tough work and sometimes being tough is the only way to get the job done. And done it is! The tube is out! Max and many, many prayers have done it! The tube is gone and we are now on bi-pap again until our next x-ray at about 8 or 9 o'clock, that x-ray will show us were Max is breathing on his own. Please, please pray for success, psychologically Max needs this success in order to make his plan work.

Stay tuned.....