6-30

“A minor setback for a major comeback “, in the parlance of ECMO/ICU veterans like us :-).  

Late last night while sitting comfortably an hour into the Dark Phoenix movie after kissing Walker goodnight as he was finishing dialysis, I receive a text from Candy “he has been transferred back to the ICU “. Before even finished reading I am up heart rate rising heading for the door. I literally ran out of Winter Park Regal and all the way to my car. Then I drove quickly back to FH. 

The staff on PCU fl 7 decided to send him back to his old ICU floor 5 after his stats became challenging due to a new fever and congestion that was causing a drop in breathing stats. Yes, we were upset at first but after getting to see him we realized that he was okay. And we were happy that he was back with this familiar crew and docs who know his story. 

They cultured everything and found a bacterial infection and now they have to find out where it’s coming from so we are off to CAT scan tonight. So not great news but really not bad news either because we can see that Walker is continuing to get stronger and more determined. Yesterday he got out of bed and stood up by himself for the first time since ECMO in March 17. He told Candy, “I didn’t know I could do that.” 

“Rehab is for Quitters” And Walker is not a quitter, I saw this on a shirt this am while at Panera’s and had to laugh thinking how Walker went back to the ICU cause rehab is for quitters. I know, desperately seeking humor. And thank God for humor, as Jimmy Buffett sings “if we couldn’t laugh we would all go insane.”

So, Walker, his now famous Beta fish , ECMO, and his Pothos plant, Never Give up are much more comfortable in familiar surroundings. Sometimes moving to a new floor especially a step down in care unit can be a little bit like being abducted by aliens. Faces you don’t know poking you and prodding you in ways unfamiliar is very unsettling for a patient and family. Happy to be home at the moment. But not for long!!

During rounds this am, I overheard Dr Silvestri say we may just have to discharge Walker off this floor into rehab. Which his mom would really appreciate I know, it stresses her out to have a lower level of care for her boy. As she will say, “those multi- million dollar lungs need the best.” Walker says to Dr. Silvestri and us while visiting this morning, “they didn’t even try anything, they just sent me back here.” By now, Walker pretty well knows what needs to be done and what things are called so that he helps the newbies along.

Our needed prayers are that they kill this new bacteria and find the culprit quickly. With continued healing of his lungs and kidneys. And strength for Walker to work hard at rehab and strength for his parents to keep up their roles. Thank you so much for your prayers. 👍🙏🙏❤️