There’s still a little of Marshall’s first summer left

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Marshall caught viral gunk from his brothers. That’s the bad news. 

The good news is he flew through the milrinone wean.  It’s effects last 5-10 days once it stops per one of the transplant & heart failure doctors.

So he isn’t out of the woods.
But he has found a clearing.

It is likely he will be discharged upon another echo & more labs. Then he will have a close follow up with his hometown cardiologist.   Then he will return for a follow up in Boston within two weeks. 

Marshall will remain listed for transplant for a little while then deactivated.  He won’t lose the time he spent on the list in the (hope this never happens to him) event he ends up in the same place…

So pray, hope, wish, & help please if you can.  There’s still a little of Marshall’s first summer left and he more than deserves some time to play & experience it with his family and friends 🙂

But that’s if he can pass the upcoming tests.

And if he can kick the viral gunk. 

And if we can make it through those doors downstairs.  And through the traffic.  And away from the noise. 

And most of all, home to my big boys.  My goodness I miss them sooooooo ❤

“Babies on milrinone don’t”

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When Marshall was fresh from his first surgery, a 22 year veteran nurse looked me in the eye and said he wouldn’t thrive with just breastfeeding.  That he and I just “can’t do that.”

He tripled his size in the months we had him home.  And grew and grew until his heart was so weakened and sick that he didn’t.  

But despite how sick and weak his heart was when we brought him in, all he wanted to do was nurse.  Our nurse noted way back in June “Wow he is a comfort nurser.”

My response was telling her about that day in the ICU and how the easiest way to get me to do anything is to tell me I can’t.  

Flashing forward to yesterday:
Our nurse looked at me and said “Babies on milrinone don’t nurse.”

Marshall broke a Harvard record. Maybe even a heart baby record.  I don’t want to pollute his fragile system with the fake stuff.  And he doesn’t want to either. 

Now the challenge lies in convincing his system to let him grow.  Since he is over the shunt’s supposed weight limit, his body will naturally just maintain its weight and form these evil collateral arteries as it tries to get more oxygen Some of his doctors think that he won’t grow without intervention.

I think the implication is we can’t…so now we shall see about that 😉

Officially weaning down

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Well it is official

Docs had meeting and sent social worker in to apologize: they are dropping the milrinone tonight.

He will likely be off of it tomorrow or the next day.

So your thoughts and prayers would be much, much appreciated (not that we don’t always but maybe more so than ever) because much could change in just one week’s time if this works!!!!!!! 🙂 🙂 🙂 🙂

Day 4, Start of Week 8

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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 ❤

Thank you, Tom Petty

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For helping me get n.p.o. (which I believe may really mean “not pleased and ornery”) Marshall to sleep.

Marshall has a thing for guitars…go figure, right?

Our nurse is double checking on the time as I type.  As of yesterday, the cath was set for noon. 

Breathe,  Rebecca…

Today is shaping up

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To be a little less mundane than usual.

But around here boring is better.

Some of Marshall’s labs came back.  His white blood cell count is high.  And he has a low grade fever now.

He is smiling still.  So it could be worse.

Hopefully this won’t change the cath plan for tomorrow…

Please send him some good, healthy thoughts & prayers.  Please.