Rounds happened. So far Marsh has been sleepy but ok.
Marsh is presently on an o2 mask instead of high flow cannula and nibbling on some food. It is a lot of work for him but he is managing it 🤞
The rounding plan is to get meds straightened out and maybe an echo.
Dr. Smith was here at 6 pm reviewing yesterday’s events. And stayed for hours.
Dr. Smith is convinced that if anyone can turn this around it is Marsh.
Marsh had a mostly quiet night. The only change is they had to go up on oxygen. Xray showed no change from yesterday. Waiting for labs and rounds now.
Cardio version has been done
His heart rate and sats are low. He is on high flow oxygen
But we all know how much Marsh makes plans of his own
So thankful for this ginger boy❤
I didn’t too much celebrate the arrythmia break knowing Marsh as I do.
In fact, I asked a family member regrettably what he would do next…
As for the bad night: Marsh had been mostly stable and sleeping. But a mess.
The night brought only 6 hours of relief from the arrythmia.
Then restarting of the cardizem. Then a series of desaturations.
And now high flow oxygen following an xray which showed a focalized spot on his lung.
The good news is Marsh fought like a UFC champion against the oxygen mask… it took 4 adults to wrangle him into it.
Labs are ok. Liver and kidneys are recouping from heart stress. Bnp is 375 ish and trending down 🤞.
I reached out to Dr. Friedman about this situation. Now waiting to talk to Dr. Smith and Marsh’s dad.
The arrythmia broke.
A fluke yet none the less scary desat and
poof:
His resting heart rate is normal.
Dr Smith is at a Binghamton outreach today and not here again tomorrow. On call cardiologist and another cardiologist from the Syracuse team evaluated Marsh via echo this a.m. They determined that the atrial flutter is somewhat settling down. It is not gone but not as bad as it is without the iv cardizem on board.
Soooo no cardiac conversion (electrical stimulation ) at this time. They all agree to pause until they can determine the best way to treat the atrial issues. I think the team here is hopeful the right medicine combination will do the trick.
I reached out to Friedman and encouraged him to lean in.
Rounds happened. They are adding another antiarrythmic to the home medicine regime. Marsh is presently comfortable and using the tablet (gigantic progress forward in comparison to yesterday). They will draw labs and place a new iv site because the first site was causing tremendous and constant pain.
He is allowed to drink finally and 🤞 we can feed him soon to try to get some nourishment in…
Please keep sending those big thoughts and huge prayers
Hugs and love and so many thanks ❤
The plan was to correct the atrial flutter via electrical means but the plan has changed some for a while.
Team is reconvening and 🤞 reaching for Friedman as well.
Marsh has been with us 2,099 days (yes I am still counting)💖
One year ago today we were bringing him home from Boston post 3rd surgery.
92 days until he turns SIX!🥳
