Surgery Day #8

We snuck out this afternoon and the weather is slowly changing on us!! The leaves on our block line the streets with orange and brown colors- it's beautiful. I know Henry will love playing in the leaves (maybe even raking them for us- jk!). Julie and I were able to work out, shower at home and clear our heads thanks to GoGo (Grandma B) this afternoon and GG (Grandma S) this weekend. A short run on the treadmill and a shower at home does a world of good for us and have helped us stay energetic and strong for Henry despite the long time away from the routine we usually know. And Henry even got to listen to some cool Jazz while GoGo was here... good times:)

Speaking of Henry... he has thrown us for another loop today! The providers started looking into why Henry is struggling so much with weaning from the vent and are looking at different ways to help him in his recovery. In rounds this morning the Intensivist mentioned that he was displaying symptoms consistent with something called bronchomalacia. This is a condition that affects the lungs in younger kiddos and makes weaning more difficult. She relayed that they would stop any aggressive plans for weaning from the vent for today and wait for more optimal conditions. If Henry does have this condition he might be at high risk of failure/re-intubation if his lungs aren't ready to be quite so independent. Things that need to change 1) his xray needs to clear up meaning 2) he needs to clear the junk/secretions in there and 3) he needs a couple days worth of Vancomycin, the antibiotic he was put on to address the strep he was diagnosed with yesterday. We are trying to be patient, but Henry shows us in so many ways how much he hates the vent. Ex. he has almost completely pinched the tube in his mouth and can now refuse suction with biting down. It's a very hard process, but the providers are all over it. Sooo, we're continuing down the slow and steady path- all in good time.

Henry's team discussed lots of other details that continue to help him move forward despite the vent help. He is slowly getting off a lot of heart medications, meaning his "new heart" is getting more independent! Since his hospital stay has been on the longer length of normal, his plan has shifted to accommodate long term needs. Henry is now getting nutrition with an NG tube for nourishment and tolerating them well so far. Henry has started with an Ativan/Methadone treatment in order to prevent withdraw effects from the amount of narcotics he's been given for pain control post-surgery. This was scary at first to hear, though he now seems so much more relaxed and comfortable today as a result.

I haven't mentioned lately how great he looks- his swelling is down and color is great with warm toes and hands! Several ways to take this next comment- Henry is very feisty with his vent, and requires almost being held down to be suctioned. I was sad at first to watch and help him through this, but amazed that 7 days post-surgery the man is pulling his feet up and grabbing onto his providers with his arms to keep them from doing anything he does not like. I think we had no clue how strong he was and now know this man is a force to be reckoned with... inside and out:) We will continue to foster this strength (not the biting) and help him through these challenges as it's hard for him to understand the day to day tasks here.

Julie and I are good, and appreciating all the calls, emails, texts, conversations, letters and meals you all have spoiled us with. Please know that all this love is poured right into Henry to help in his recovery. He makes us smile everyday:)

Thanks for checking in with Henry- more soon!

-K&J