Post Op Update
Just as we weren’t quite prepared for how long, extensive and ultimately apparently successful surgery would be, we didn’t have much of a clue as to what recovery would be like. It has been a difficult road. The good news is that we have reason to be optimistic.
Surgery on Wednesday was long and exhausting, but the surgeons were very happy with the results, feeling like they got all hint of tumor. That hasn’t changed and they continue to visit very satisfied with the procedure and how Crash looks. Much of what they removed was tissue that had been consumed by the tumor but now had no active tumor in it, just tissue that the tumor had evacuated when the chemotherapy did it’s work. They removed the lower and middle lobes of his right lung, most of the right side of his diaphragm, a portion of the pleural lining of the lung, and a portion of the pericardium lining of the heart.
Since then, it has been a step by step process of recovering, with the goal of getting him active as quickly as possible. There are clearly differing views / philosophies amongst hospital staff on best approach to many things, but it is particularly acute when it comes to recovery. Some, like daddy, favor activity over atrophy, others take a much more measured approach. I get that there is a balance and that rest is good but I almost always side with the staff that wants to push him a bit. Ami acts as a bit of a counterbalance but in the instance of this recovery we are pretty much in lock step.
The thing we weren’t prepared for was how vacuous the drugs (whether the residual effects of the anesthesia, the epidural, or who knows) would make him. The joyous personality/spirit that this little boy has is just gone. No matter what we do, we can’t get through. And it’s not even trying to get out. We both know that he will come back within a day or so but it is heartbreaking. Ami describes it as if his soul has been sucked out, and it feels a bit like that has happened to us as well - though we remain strong for him.
So our priority is to get as many of the tubes and attachments off/out of him as quickly as possible. And the same with the drugs. He spent the first days after surgery with IVs in both wrists, both sides of his port accessed, a main line through his neck, a chest tube (drainage) off of right side, a tube through his nose to drain fluid/air out of his belly, a breathing tube, oxygen strapped to his nose, an epidural in his back and a catheter. Not to mention the various leeds for monitoring his vitals. Given all of this they’ve also strapped him down to the bed to prevent him from pulling at any of these accessories. Not that daddy doesn’t mind a little recreational restraint now and then, but under these circumstances it is horrible for him - and for us to see.
So getting the tubes out (especially on his face) and those hands free was our top priority and would enable us to get to work on weaning him from the meds.
On the morning of the third day the new shift of staff was doing their handoff and in the midst of doing rounds (Ialways join for the rounds - and by join I mean listen, question, input - actively participate as no one knows the patient better than you) the chief Doc (I still don’t really understand the hierarchy) began questioning the team as to why he was still on oxygen, why this and that IV were connected, etc. This opened up a great opportunity for Ami and I to lay out our case, our bias. We were careful to do so in a way that was supportive of the previous shift but also made it clear we wanted to get a bit more aggressive. The head Doc agreed and over the course of the next 90 minutes, Crash was taken off of oxygen, the tube through his nose was pulled, his main line and one of his wrist IVs removed and his arm restraints taken off. Our nurse (usually Crash’s biggest advocate) was essentially high-fiving us and the head Doc later pulled us aside and complimented us for being good advocates - at which point we told him that we really wanted to get Crash outside. He said “absolutely” and with that we set about figuring how to load Crash and all of his kit into a wagon for a stroll.
OUTSIDE
About the only engagement we had been able to get from Crash was a response to the question - do you want to go outside? He didn’t light up in response at all but merely would start repeating “outside daddy, outside” so our hope was that some fresh air might break him from his funk. Yale has an outdoor healing garden on the 7th floor with a small stream and a little trail through a bit of a garden Crash loves to escape here during his chemo treatments to play with the wind chime, throw rocks into the stream but mostly to find bugs - to basically feel normal.
Unfortunately Crash’s blank look and lack of engagement persisted despite the change of scenery - but I think it signaled to Crash that he wouldn’t be stuck in bed forever.
We returned to our ICU room more determined than ever to get him off the drugs and had a conference with the various disciplines during the evening rounds. Crash was still not engaging at all - and while we didn’t expect that this condition would be long lasting, it was difficult to get him to engage in the sorts of activity that in our minds would speed his recovery.
It was agreed to take him off of the strong stuff and put him on conventional meds with morphine to be used as a back up. The epidural team reluctantly agreed to cut his epidural dose in half but after a discussion with another family who we met here going through a similar process, we decided to keep the epidural running through the night. Needless to say, we went to bed not feeling particularly great.