Surgery Update Day #2

Henry has had a relatively calm day... well, relatively speaking considering he's one day post heart surgery yesterday.  He has continued on with his path to recovery with only a few setbacks. The team decided he needed a little more oxygen support after extubation due to decreased saturations and he is now sporting a bipap mask.  To put it mildly, he is not a fan of this mask.  But this is a temporary thing and though a bit of a step backwards, he is still progressing well.  Last surgery Henry reached this step after a month of hospitalization!  They have taken him off most of the heart medications he needed during surgery, and will continue to wean the remaining as he continues to stabilize.  We are amazed that he is so strong and brave and pleased that he seems to have found comfort in family's smiles, support and hand squeezes.  Both grandmas have confirmed that Henry mouthed "Hi GG/GoGo" when they were with him... it warms our hearts that he is surrounded by such loving support when he needs it most.

Julie and I have shifted gears to "hospital time" and are trying to acclimate to the slower pace of sitting, standing and hovering instead of chasing, rocking and tackling (figuratively speaking of course:).  It is a strange time vacuum that is hard to explain other than complete unawareness of what day/time it is despite a huge clock in our room dictating these facts clearly.  You forget when to eat and sleep, and start to run on the 12hr shift of the staff that surround you who do neither in your presence.  As a parent, your job is to ease your child's pain.  There is definitely no right way to do so in this situation other than to do your best to interpret what your child needs to staff as best as you can.  Our "expertise" is from a frame of reference as parents of an infant going through this (when Henry was 22 months old!) and we are learning as we go about how to help him through this as a three and a half year-old.  It will be a relief when the mask is off and he is more awake in order to tell us what he needs, so keep him in your thoughts as we help him over this next hurdle.

Humor is always a coping mechanism Julie and I use when tough times surface, and several realizations that have made me laugh over the last day include: 1)  If Henry's hospitalization is as long as it was last time, our house will no doubt be the cleanest it has ever been.  I discovered a gleaming white microwave when I was heating up some soup for my Mom this evening when she told me she was a "nervous cleaner".  Pretty sure it wasn't that clean even when we bought it!!  2) My sister has found a secret addictive ingredient to add to a dessert she made us... I literally cannot stop eating it!  3)  I am surely going to need a social work "intervention" for breaking the rules of sneaking food into the PICU (clearly stating no food) due to said dessert above and the goodie bag my coworkers gave me!

Thanks for checking in on us and the continued support!

Kate, Julie, Gus and Henry

Picture of our (temporarily maskless) boy relaxing...