Time for me to vent.

I try not to do that before an audience but I’ve soooooooo had enough.

I will preface this by saying the important stuff:
#1: I am really, truly, incredibly thankful that the world’s best have turned Marshall’s health around. Without them, our little miracle wouldn’t stand a chance. And he wouldn’t be better than he was when we brought him in weeks and weeks ago without the tremendous skill of this team.

#2: The fact that Marshall keeps getting bumped from the cath schedule means that they’ve made way for the sicker kids. So there’s some small relief in this for Marshall’s sake but such sadness for the other kids. (Plus I’m in no rush to send him off for a procedure which could interrupt with his pulmonary blood flow if it doesn’t work. And there’s no words to explain how we all feel about him going into the O.R. again with the stakes so high…)

That said, I’m really, really upset.

This is morning number FOUR of missed meds (at least 10 doses), missed feeds (I lost count of how many), missed sleep (to monitor how Marshall handles all of the interruptions in their “normally scheduled plans”), and massive stress (yup, Marshall gets stressed and picks up on others’ stress too…bingo! I am not as strong as y’all might think). All for a cath that I’m not entirely convinced is going to do a whole lot of good…

My patience is nearly gone. I have plead with the team to use this time we’ve spent vacillating to wean down the milrinone to see what this kid can do on his own.

It seems I am the only one confident in his abilities.
All I get in return is nothing but resistance: “We need to see how he does with the cath…”

But they won’t do the cath because there’s no room in the ICU just in case…

You see where I am going with this?

This is Harvard University. The world’s best. And we are so lucky to be here. And so thankful for the miracles they pull off every day.

But we want to go home. And I think (could be wrong but I’m pretty sure) Marshall is ready.

Marshall improves every day. It’s time to see how he does beyond the doors of this great place.

Life is meant to be lived.

And I have three boys at home I am dying to see. My own heart doesn’t get a rest unless these four boys are together. Bringing the big boys here is too ridiculously expensive. Swinging the expenses of another trip here for the big boys to visit takes away from the constantly dwindling resources I have to pay for our living expenses and cost of Marshall’s care.

And Michael has a job he can’t really have with him here.
And his FMLA is running out soon.

And Marshall needs us both…and he needs his brothers. And he needs to continue to be well.

Please send good thoughts. That seems to be all which works. Many, many thanks ❤