Surgery Day #3

Henry had a restful night. The nurse slowly weaned his oxygen "support" via the bipap mask from 65% to 30%, and his SATs maintained in the 90s. I skipped an explanation about bipap this hospitalization, but a quick description (via nurse Julie) is that this type of breathing support helps give Henry's lungs some positive support both when he inhales and exhales. When I talk about SATs, this is one of the measures on Henry's room monitor that indicates the oxygen level in the blood. Most of us are at 100% or close. Henry is usually in the mid 90s, so the higher we can get this number the better! They tried to take the bipap mask off this morning and his SATs were hanging out again in the 80s. During rounds they decided to put the bipap back on and continue to work on getting this mask off without deSATing.  They will slowly start weaning off the support settings again with some breathing treatments to help.

The team is also looking more closely at Henry's platelets, which continue to trend downwards instead of recovering post-op. There are several contributing factors that could be causing this including recent surgery, heparin exposure and Henry's genetic predisposition.  They are looking into all of them and running tests to narrow down what intervention might be best to help him. Henry is also feeling some pain this morning, and we are trying to help him "wake up" more in effort to breath more productively, but keep this pain managed. Ideally he would do all three- wake up, breathe more efficiently and have pain managed.  But pain medication keeps you sleepy, therefore setting us back respiratory-wise.  It's definitely a balance, and we feel fortunate that the team is not rushing him nor ignoring pain management during this process. We will continue to be at bedside to help him. It's a lot to manage, but his medical team has been awesome. I remember last time feeling the back and forth of progress vs setbacks. Today seems like we're straddling that line as he starts to wake more. Hopefully we'll continue to know more about what he needs as the day progresses and be able to comfort him more effectively as he starts responding to us. During a period of time that Henry's mask was off, he very clearly requested his iPod... which makes me know he's feeling more himself. We came armed with every possible distraction including phones, iPad, Lorax/movies, and books and we are very prepared to explore these with him for our own non-clinical symptom management:)

More soon- thanks for checking in on our guy!

Kate, Julie, Gus and Henry

Henry and Mr. Bear with their "space masks" on.