Steele has had a rough couple of days after the IVIG treatment. The side effects have made him really fussy and puffy. His oxygen sats were trending on the low side, so they had to up his O2 flow. I mentioned in the last post, that his medical team is looking at two pathways, park him on Milrinone until a donor organ arrives, or start tinkering with the Milrinone and replace it with an oral medication called Capropril (Manages High Blood Pressure). So, they have lowered the Milrinone to .4 mcg/kg from .5 mcg/kg. This automatically changed his status on the list from a 1A to 1B. Yes, it's disappointing.
The medical team is testing his ability to respond to these changes, so they can get him off the central line and therefore look at the possibility of doing the Glenn surgery. That scenario would be a gift from above. Rachel and I are constantly battling the team on making too many changes at once. Finally, our battling is working so they can pinpoint the issues that come up with his blood pressure or oxygen sats. One thin at time, not four. Don't cloud the picture with all the mixing and unknown changes that will follow. Do one thing at a time, that is my advice to all you parents with kids in the hospital.
Again, it's hard seeing him fight through this, but if he can it will shoot him over the moon. One of the Attending MD's who we really like has this chant going on everyday during rounds:
"Line Defense! Nurses unite, keep Steele Alive!!"
You would think that medical professionals would have the good sense to not change too many variables at once - sheesh! Keep advocating for your boy... I am sure it sometimes seems like you are pushing a boulder up a mountain, but it makes all the difference that Steele has you fighting in his corner. Love you guys.
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