Harder Than Hard

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Marshall is in the same bed space (#23) as he was after his first surgery.

If no one had told me he was him, I am not sure I would even recognize him as my own.

To say the baby we saw last night looks like Frankenbaby isn’t intended to be rude.  It is the absolute truth.

It. Is. Horrific.  And. Harder. Than. Hard. To. See.

He is intubated… doubly so. They team did so much with his lungs he is also on nitric oxide -a powerful lung preserver in this sea of surgery.

His chest is still open.

He’s an absolute mess.

Seeing him was far, far, far worse than I had expected.  I haven’t taken the time to adequately address those feelings.  But, hey, there is no time for any of us to break down now…

I keep mentally begging him to find his way back to us.  What a massive challenge… 

We have not yet seen Marshall this morning because there is a sterile procedure on the baby in the bedspace next to him. When I called in after our nap (less than 5 hours of sleep last night), his nurse said he is “stable” and last night was thankfully event-free.

The nurse believes the plan is to start the “Free the Pee” (diuresis) process this afternoon. 

But, since Marshall is Marshall, he started that one on his own. 

I think it is safe to say that so far and THANKFULLY those good thoughts and prayers are helping (again).  Please, please, please keep them coming.  My goodness he needs them.

Now he needs to get off the breathing tube.  The longer he is on it the bigger the risks.  And his lungs need to find the strength enough to heal…

And my goodness he needs to eat…though by the sounds they won’t even try that until tomorrow.

Breathe, Rebecca. ..

And I would give nearly anything to get his chest closed up sooner than soon.

In the back of my mind is the thought that when he wakes up, he is going to be so furious…

Hopefully.

Timing is everything

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We Just talked with Dr Baird

Surgery was a success. We now need to wait and see how the recovery goes. If he makes it through the next 8 hours, his chances will be very good.

As for technical details, Dr Baird repaired the total anomalous pulmonary venous return and attached them where they belong at the back of the heart. He also attached the superior vena cavas to the atrium where they belong.

He unstaged the shunt and found a blockage. (So glad that didn’t cause another j stroke or worse).

Amazingly, Marshall’s heart function has improved. Dr Baird is certain part of the heart failure was due to overload (I can not tell you how many times I questioned them on this while he was inpatient this summer.) The team also suspects a heart infection also caused the failure.

And the timing was everything.

So. Thankful. For. Everything. That
Has. Gotten. Him. This. Far.

His pressures are great. His oxygen saturations are in the 80s.

So it is time for Marshall and the team to pull the fluid off…remember 8 months ago how we had to “Free the Pee?”

Pray for tons. And tons of it. His lungs collapsed and they spent a half hour getting them back post op.

Marsh has never had breathing problems. This unnerves me.

His chest is still open. They should close before or on Friday.

Please, please, please still keep Marshall in your thoughts & prayers. The next 8 – 36 hours will determine which way this is going to go. And, just as with his first surgery, as each hour passes, the chances of losing him diminish…

I am off to go see my baby (and fight if I must…10 hours is much too long to be away from him.)

Eight Hours Later

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I passed my baby off eight hours ago. 

I tried not to cry.  The only experience I can equate the.feeling of passing Marshall off to OR Nurse J, an anesthesiologist,  and a doc is it is a step above holding my dog at the vet on her last day with me.

My. God. This. Is. So. Hard.

A pre-op nurse provided ample distraction with chatter about Barbados. 

Marshall has been on bypass for 5.75 hours and counting.   I don’t know enough to know but that sure as heck doesn’t sound good.

Please, please, please think of him tonight.  Any strong thoughts you can spare for him and his team will be reciprocated one hundred fold.

And maybe send a good thought to the big wild boys.  I would give nearly anything for them to be here.  They miss us terribly (and us them).

(**Marshall’s nurse just walked in at 9:56 …he is off bypass finally…**)

Unanimous

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Dr Friedman stopped by following the medical – surgical meeting this morning.

For the first time since Marshall first fell heart sick in May, the team is in absolute agreement.

It’s unanimous.

Going forward now is in his best interest.  Apparently the team devoted more discussion to how they helped Marshall get well enough to be considered a candidate for the Glenn after how horribly sick Marshall had been.

Dr. Friedman stated most kids do not recover the way the Marshall did.

I think it is all of the thoughts & prayers everyone has sent Marshall’s way. 

And, of course, the team’s skill. 

For all of it, I am so thankful. :-…)

Time to find my breath…and more coffee…

Happy 8th Month Birthday, Sleepy Boy!

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Celebrating early today with a nap because of this afternoon’s events…

Yesterday’s cath knocked a lot out of Marshall and all he really has been doing is sleeping and eating.  Which is good.  My hope is he is laying here in my arms gathering his strength. 

Please keep our EIGHT month old baby and his team in your thoughts as he faces whatever today has in store for him. 

We can’t thank you enough ❤

First Case Cath

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This is how we left him…happily laughing (and just a little “loopsied” as Tristen once said.)

He is having his cath now. 

The team is going to try to place the stent (super cringe), check out and perhaps coil (cringe) the collateral arteries, peek at the coronary arteries (in July they discovered via CT scan one coronary artery was quite small and could have possibly contributed to the stroke), measure the hemodynamics, investigate the ventricular function, and gather as much info as they can as he faces the possibility of another open heart surgery.

That surgery could be as soon as today if things go differently than we all would like…

Please keep our littlest miracle in your thoughts and prayers if you have any to spare. 

So. Many. Thanks. ❤

You know you are in the right place…

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…when you are dragging your heels to your son’s hospital room and three of your favorite nurses are your welcoming committee.

When we first hit the floor, Nurse J encountered us in the hall on our way to our room (a private, luxurious, spacious place with a mini fridge in the new section of 8 East.)  She immediately gushed “Hi, Handsome! OH MY GOD YOU LOOK SO GOOD!! I LOVE YOU SO MUCH!!”

Then she hugged me.

Once we settled Marshall into his room, our favorite Nursing Assistant, the adorable Miss M, had written “Welcome!” on the white board.  And left a massive Elmo balloon just for our little man (he L-O-V-E-S balloons!)

Then we had some laughs with Nurse Soon to be Mrs A as she did her intake work. 

The night was long and significantly lacking in sleep.  MARSHALL WAS WILD FOR HOURS AND HOURS during and after the intake process.  Then he settled down and was woken up regularly for labs, vitals,  & feeds.

And he is powering through the NPO process now.   He nearly finished his Pedialyte around 5:30 a.m. and has been cuddling and playing since. 

We send him off for his cath in about an hour.  I should go get dressed but I don’t want to put Marshall down…