Marshall went back into the ICU late yesterday afternoon following a four hour incident. 

He is ok.

The neurological team is evaluating him and we won’t know more until later today. 

We know he had a stroke.  I knew before the team and as it happened.

In fact, I told Michael he was having a stroke as I waited for help.

A mother’s instincts are stronger than years of medical training.

Please, please, please, please send Marshall big, strong, powerful thoughts, prayers, wishes, or whatever you believe in.  I beg.

Ironically during the incident yesterday is when all of the teams decided to inform us of interestingly timed information regarding his health situations.

The echo showed the dysfunction of his heart had improved. It is now at a moderate level. 

What this means is his heart is responding well to the IV meds. 
That’s my proof all of the good thoughts sent his way are working. 

So I am sending gratitude filled thoughts to everyone who sent them.

And pending devestating or catastrophic events I don’t even let myself consider, as well as insurance, he can be placed on the transplant list.

What this means, only time knows…but I m choosing hope.  Fiercely.

The wonders of technology allowed Marshall & me to witness Isaac’s kindergarten graduation ceremony. 

Thank you, Facetime, and all parties facilitating the endeavor,  for such an opportunity. 

And, more importantly: CONGRATULATIONS ISAAC!!

It is so close I can see it.

And it looks like it hurts.

He is pretty grumpy about it…poor kid

Marshall isn’t one to sleep through the night.  And tonight I am having trouble getting back to it. 

So not only do I get to watch the little man sleep but I have the time to share a really powerful story.

In the company of a great nurse who Marshall is quite fascinated with, I heard a story worth repeating. 

Over the course of our late night transplant and heart babies conversations, Marshall’s nurse offered me ample reassurance regarding the possible paths before us.

For his patience with my endless questions, I can’t thank him enough.

And, more importantly, Marshall’s nurse reminded me again of how lucky we are that Marshall is here.

Tonight’s discussion revealed that Marshall’s nurse has a remarkable history with Boston Children’s.   He bears the scars.  

We all have them…they are like stories carved into our flesh.  His raised my curiousity and he graciously offered to share this:

Marshall’s nurse was a patient here. AT age 11 a roller blading incident and “minor” helmet-less fall caused a brain bleed. His father rushed him to the hospital in his undercover Boston Police Department car.  He underwent brain surgery within minutes, went into a coma for two weeks, and remembers only the events of his recovery.

And now he is standing in the middle of the night watching over my youngest son. 

In the years since his experience as a patient here, he volunteered his time helping any way he could – “from holding babies to playing with kids.  I would have been cleaning floors…there wasn’t anything I wouldn’t do.  So when I finished nursing school…”

“Of course you came here!”  I helped.

I don’t know how I managed to finish his sentence with the lump in my throat and gigantic goosebumps on my arms.

My son’s life was (and still is) in the hands of the Boston team.

Just as our nurse’s life was.

And we are all still here, supremely thankful and exchanging stories. 

Breathe…

All I can really say after days of hearing “after we know x, y, z, we can make a plan” is this: Marshall will have the final say in any plans all of these teams of doctors try to make.

I have found a tremendous amount of (restrained because he is still in the hospital) freedom in accepting that.

So today was a big day for him.  He had a line placed (a more stable site than an IV on a baby who loves exploring everything he touches).  He had his CT scan (a chat with Dr Friedman left me wanting to know more about the findings).  He returned to us fed and “loopsie” as his older brother once described following a sedated medical procedure.

And he was smiling.  He took a nap for a long time in my arms (my favorite place for him).  Then had a big dinner of pears (his second night eating solids!!   🙂 )

And now he is sleeping soundly. 

We are still waiting on his bloodwork from earlier. They shifted his meds around some. 

Maybe we will know what Dr B has to say (he is the surgeon who did round 1) about the possibility of a Glenn.

And maybe will hear more from transplant team. 

And maybe just maybe I am one day closer to having all of my babies under the same roof.  The whole NOT having them together is wearing me down. 

I miss my big boys soooo very much.

That said, I am so thankful to the team here, for the folks home caring for the big boys, for Marshall’s amazing smile, and for the tremendous support ❤