Superparent terror

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Shortly after my last post, I tried to get some shut eye. And as every baby does, Marshall fussed shortly after my head hit the pillow.

His dad was on duty and scooped him up. Nothing comforted him.  So his fuss turned to wails. The wails turned to cries. Then things got crazy.

I got up to suggest a diaper change (he hates being wet and/or dirty).  Michael could barely hear me over Marshall’s hysterics. 

As soon as I unwrapped our baby burrito, I saw and heard the issue: his chest drain was letting air into and out of his little body.   The more he yelled, the more air went in and out.  And the air was whooshing rapidly with each yell.

I immediately paged the nurse.

Seconds later we had four nurses, a nurse practitioner,  and a surgeon in the room. The chest drain was too far out to go back in.  So the surgeon finished taking it out.

The nurse practitioner gave us the run down on what to expect and insisted I was “Supermom” for reacting as I did.

Apparently she missed the terror I was feeling during the incident and then as we watched all of his stats register again.

His lung could have collapsed. His heart could have been overstressed.  His xray could have come back with more air in his chest in addition to the air in his abdomen.

But thankfully it didn’t (so far).

He is superthankfully fine.  And Michael stood guard til the wee hours of morning so I could get some much needed rest while Marshall slept off the painkillers administered during the drain removal. 

And his dad got to get some rest close by – in the playroom of all places! 

What a first night…

Full house

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The CICU was full (as of last night.)

From what I’m seeing and what nurses have told me, the step down is full.

All of this and I wonder if every patient here feels like Marshall does.

It seems Marshall hates medical apparatus.

I won’t share the horrors of the ventilator experience.  Yesterday Marshall yanked 6 inches of his NG tube out. Today we pried his nasal cannula out of his hands at least 100 times. He kicks off his monitors regularly.   He Houdinis his leads.

This kid is something.

But he graduated.

No more CICU.  No more oxygen.  And best of all, no more being away from us.

We finally get to flex our parent muscles (under supervision until we demonstrate our ability to care for him)!!!!!

And per Dr C (who is really a nurse practitioner as I found out this evening) “Dr Luis must really like you. He gave you two weeks instead of a month of skimmed milk.” 

Perhaps. I think it is more likely that I have worn him out with my endless interrogations ;-). 

Im shooting for medical magic to appear out of thin air tomorrow.  Else we have a couple of weeks more in Boston as the chylous effusion gets treated.

Marshall’s team still must smooth out the details of the path going forward. It’s a bit worrisome but as Dr Baird said, “Leave the worrying to us.”

Tomorrow afternoon we will have more answers regarding this pesky air bubble.  And we will have skimmed milk for the hungry hungry little man.  Best of all, we get TIME WITH ALL FOUR WILD BOYS!!!!

We can’t thank everyone enough for the good thoughts and prayers.  Please keep sending them and perhaps extend them to the families here? 

Happy 2 Week Birthday, Marshall

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Today has been rough for our little man.
He stepped down to the chaos of 8 East. He has a pic line, a pair of leads, and a small chest drain.  He gained I.V. fluids and is again N.P.O.

His team discovered some air in his abdomen.  Dr. Baird, Dr. Luis, Dr. Friedman, Dr. C, a surgical assistant, a nurse, and his already worried parents (that’s us) gathered around his crib to discuss why.

Luckily his dad was with him as they did xrays to source the air issue.

And I’m hoping/wishing/praying that it isn’t bad.  He is so hungry. And sooo little. And so pale.

We sourced yesterday’s grumpies

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I noticed Marshall’s chest drain was full of gunk yesterday while he was with THAT nurse.

THAT nurse is the one who made him cey EVERY SINGLE TIME she touched him.  The good news is most hospitals are full of THAT nurse and you are lucky to get a good one.  Not here.  This place is full of good nurses and we were just unlucky to get THAT one.

End rant.  We will not have to see her again for some time. I hope.

Needless, the drainage is chylous effusion.

It is serious.
It is scary.
It is a big road block.
But it is treatable. And Dr. Baird predicted it would happen which is why Marshall’s chest tube is still doing it’s job.

The Great Nurse K (his nurse for the past three nights who radiates a special kind of rare charisma/pure joyishness) delivered the news at 6 a.m. via phone call.

And she assured that since there isn’t a ton of drainage, he will be ok.

So today we explore treatment options. And celebrate the wins: she cleaned out his pick line so he doesn’t have a million i.v. caps & tubes attached to him, she removed his arterial line (daddy has no excuse for avoiding diaper duty!), spruced up his bassinet, and happily gave him a “bath” (a real bath is still weeks away) to bring out the red in his hair.

Time to go get my hands on a sweet little boy…36 hours til all of my big & little boys are together again ♥

Greetings from Mr. Grumbles

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Dr Luis was here when we arrived this a.m.  Marshall’s progress has been great.  Though his mood isn’t so much.

He is just a grumbling grumbler today.

Considering all he has been through in the past week, (I CAN’T BELIEVE IT HAS BEEN A WEEK SINCE HIS SURGERY!!) this little man can be as grumpy and grumbly as he wants.

His blood gas levels are ok though his lactate is back up. Dr. Luis isn’t concerned and there are strategies they can take if there is concern.

Annnddd Marshall is losing the last atrial line. Which means….drum roll please….WE CAN HOLD HIM AS SOON AS IT IS GONE!!

There are no words to fully express how thankful I am… even for THAT nurse 😉