Surgery Part II Day #32

Henry has had a great day! We are all settling into our new environment, and feel like Henry is really set up for progress here. Henry's team rounded this morning and outlined their goals for Henry while on the floor, which is (happily) a much different set of goals than we were used to in the PICU. While in the PICU we were concerned with Henry's heart recovery, becoming independent of the vent, etc. Goals for Henry now center around returning him back to our home resembling the pre-surgery Henry we know and love!

Pieces of this are medical: He is still on a little O2 help to keep his SATs consistent; he takes a handful of medications to ensure his body chemistry is balanced and getting all the vitamins he needs; he continues to be on breathing treatment every 6 hours to ensure his lungs are working efficiently; he continues to take medications to address withdraw and make sure these symptoms are managed while scaling them back to ensure he does not become dependent on them. Henry has been a trooper while we attempt to find a schedule that allows for taking all the needed medications he needs throughout the day, enduring the breathing treatments and easing back into starting solid foods without one making the other more difficult... it's truly an art, not a science.

The "non-medical" goals involve helping Henry relearn daily tasks he did pre-surgery. In the nutrition department this means increasing Henry's diet and fluid intake while being mindful that this might be a challenge for Henry to do safely considering his extended intubation. In the communication department this means ensuring Henry's vocal cords recover for the extended intubation and are healing while we anxiously await his beautiful voice to return. In the mobility department this means helping getting Henry physically stronger meaning sitting, walking and more able to do the normal Henry things he does when we're home. We'll be trying to help Henry accomplish this all while learning ways to continue to comfort him and ease this struggle for him as much as possible.

Henry has been a little drowsy today still but continuing to show us signs of progress. He played on GoGo's iPad (see above picture:) with no shaky hands or hesitation, and played on the floor mat a little with blocks- even knocking them over a couple times. We haven't been able to work with them yet, but met with OT and PT to discuss goals and frequency of our work with them while Henry is in the hospital. Henry has good head control, but isn't able to sit on his own yet, so he has a ways to go. Our PT said that he will be re-learning all of his skills pre-surgery all over again, but at a much faster rate. So, we may be uploading some videos soon with progress and get to celebrate the milestones all over again with Henry! This will no doubt be a challenge, but as always Henry continues to amaze us with what he has already been able to do post-surgery. It is an inspiration to be around and we're so thankful to be blessed with Henry in our lives. More news to come soon!

Much love,

Kate and Julie