Thanks to our awesome RN, Nicolette (Nico) for making the kettlebell and barbell patches.
CrossFit changes lives in so many ways.
"Strong as Steele!"
We were moved to own room yesterday! It may not seem like much, but it is so much less stress on everyone being out of the "Pod". His Milrinone has been dropped to 0.2 mcg/kg, which is the lowest dose he will receive. His oral med, Captopril, has been increased and he continues to show everyone that his heart function is moving forward on the trajectory that his medical team is happy with.
If he can go off of the Milrinone, then he can be moved to the Third Floor and out of the CVICU. May not seem like a huge move, but it is a giant step forward in his heart condition. His status is still 1B, so if the heart came, he would take it. As time moves forward however, he will outgrow the shunt that is supplying blood flow to his lungs and body. His coloring will start to turn blue and his oxygen saturation's will lower. The heart failure team will begin to evaluation his second surgery if the shunt becomes a critical issue.
The original plan was to get him to the second surgery, which would be a gift from god. We have been told by several pediatric heart physicians that keeping the original plumbing is always a better option and would by him more time before a transplant was necessary.
His left arm mobility has improved a great deal this week. He is opening up his fingers and moving the wrist around on his own. It looks like he can start to roll over on his side for short periods of time.
Overall, Steele is moving in the right direction! Thank you all for sending items for the "Wall of Steele", it is so nice to come home in the evening and look at all his support and love from everyone. If you would like to send something like artwork, pictures of your family, or just positive thoughts, we would love it!
Please send to:
Ronald McDonald House
ATTN: Thwing Room M307
520 Sand Hill Road
Palo Alto, CA 94304
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