He smiled!!

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Marshall ROCKED THE CATH!!

He is extubated, stable, been fed twice, and in the luxurious new section of the 8 East floor.

That’s right: he bypassed the bed waiting on standby in the 8 South ICU.

Dr Friedman consulted with us as they were waking and monitoring him post cath.

The problem seems to be in a main (his natural) vein in the confluence.  They are going to watch him closely and see what happens.  The cath doctor thinks they may need to revise the glen and plug each pulmonary vein into the atrium individually. Dr Baird has not reviewed the cath information.

There is no way they are going to take Marshall back to the OR this soon unless that is the only option available to him.  He hasn’t fully recovered from Round 2. 

Plus, heart stuff aside, last night he just started rolling over again.  He needs time to fatten up, time to thrive at home with his brothers, and time to just be before he goes in for more surgery.

The cath lab fellow who assisted the cath doctor said the tissue at the blockage that they cleared responded as scar tissue does…and once they clear it, it doesn’t often grow back since he is now healed.

The pressures in the Glens are too high.  The heart function is “ok…not great.” And he still has this vein issue to address.

But he is here.

He is in my arms.

And he smiled.

When Marshall doesn’t feel well, he doesn’t smile.

For all of this, I am SOOO thankful.

Busy Day in Beantown

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We arrived safely here in Boston at 10:45 a.m. and have been running ever since.

Marshall had his pre-op testing: labs, a chest xray, a check of his vitals, a check up with a nurse practitioner, a meeting to go over consent for the cath, and an echo with Dr. Friedman. 

He sailed through all of the tests but the echo.  Dr Friedman measured the gradient at 14.  And jokingly picked on me for “letting” Marshall get this way.

As if I am not kicking myself enough…
Hindsight is always, always 20/20 ;-).  I looked at pictures from two weeks ago and saw the changes I shouldn’t have missed.

I am just an exhausted mama.  And unfortunately not a doctor (yet.)

At this point (9 1/2 months!!) all I can do is live, learn, and seriously consider going into medicine… which would be helpful in this moment as we face so many unknowns regarding Marshall’s condition.

We will know more after the cath tomorrow at 11 a.m.

Dr Friedman thinks that after looking at Marshall and his echo that the blockage could be caused by three things. 

One I won’t mention because there is nothing any of us can do except hope for the best with everything we have got (which we already are.)

The other is the connection where the veins plug into Marshall’s atrium is too small.  So they will help it get bigger again.

The other is scar tissue formation or other not so great stuff is causing the back up.

Dr Friedman said it is likely that the cath will take care of the blockage.. a little balloon dilation and volia! 

Perhaps they will need to place a stent.

And perhaps they will reoperate. Still with bypass. Still with open heart surgery.  Still with Dr Baird.

I know with every cell in my body that Marshall’s on his own path.  It’s our job to help him to keep going in the right direction.

Knowing this makes me feel still pretty messy (just entirely cried out.)

And sooo tired.  Three hours of sleep last night for Michael and me doesn’t really help what Marshall is going through. 

On that thought, it is time to cuddle my baby and hope all of my boys are together again soon…

Please keep them in your thoughts & prayers & whatever you believe.  Especially this little ginger miracle lying next to me jabbering to his “da da daaaa”…

…sooo many thanks ❤

A Good Cry & Please Help Me Carry This

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The pace of my life can only be equated to riding a rollercoaster.  Sometimes I white knuckle it and scream, other times I laugh.

And once in a while when the ride s-l-o-w-s down, I catch my breath and have a good cry.

Yesterday the ride kind of crept to a snail’s pace.  And it seems that I’m not the only one having trouble catching my breath.

Marshall’s appointment with Dr S in Syracuse yesterday was tough.

Having four boys in this crazy world isn’t easy.

But my GOD it’s so worth it.

Helping the youngest of the boys fight the evil of Congenital Heart Disease with every beat of his heart only adds to this feat of daring we all so gladly undertake.

Marshall is one of the most amazing humans we’ve ever met.

Ask anyone who meets him.

He was such a good boy during yesterday’s appointment.  He showed off his new sitting abilities in the waiting room by squeezing in on the bench between Michael and I.

He waved at the reception desk.

He sat still for his EKG.

He wiggled all over running interference with the 02 monitor and blood pressure cuff.

He babbled and held my hand watching Baby Einstein through the echo.

Then we went back to the exam room and waited for Dr S who was juggling some terrible emergencies and apologizing profusely for the wait.  (He’s the best in our homeland and we don’t mind waiting at all!)

Then it was time for Marshall’s exam. We mentioned how purple Marshall’s head seems and how these tiny vessels have crept up all over his little chest.  Dr S lingered (too long… mommy radar is always right) listening to Marshall’s heart.

Then Dr S rather nervously offered he needed to re-review the previous echos in the other room.  As he stepped out, I couldn’t stand the wait any more.

I posed: “So, what about the echo?”

He said he’d get to that when he came back.

Then he did.

And I am thankful he did though I rather wish he didn’t in some ways.

It seems the total anomalous pulmonary venous return confluence made in the repair during Round 2 is still blocking itself off. Dr S rattled the numbers ( he has other lives to save in addition to Marshall’s) stating that when we left Boston Sept. 19, the gradient was 4.  Then it went up to 7.  Then 10 at our last visit with him.

And Dr Friedman’s “only worry if it goes to 10-15” when we were heading home rang so loudly in my ears I had to fight panic in my eyes.

I didn’t cry in Dr S’s office (thankfully sparing Michael and Marshall that humiliation).

But nothing could stop the unswallowable lump in my throat.

The gradient is now 17.

Dr S had already called Friedman while he was out.

We’re heading back to Boston for Marshall’s cath as soon as scheduling tells us to (likely on Sunday if not sooner).

After the appointment we met with some really great friends who fed us and supported us through this not so great news.

Then I cried the entire ride home while Marshall slept.

Tears greeted me over coffee this morning knowing we have to leave again.

Each trip to Boston gets harder and harder.  The best place for Marshall is home with his brothers.

Something I never, ever take for granted.

I feel rather foolish for wallowing sappily like this.

The timing is awful because we’re only halfway through birthday season.  But things could be so, so, so very much worse.

There’s nothing about this experience that I expected to be easy.

(Please don’t misunderstand this next part.  I am not complaining.)

Here’s the BUT.

Sometimes carrying all of this is so hard.

So please help for the sake of these boys.  Please send some big, strong thoughts that Marshall will rock through this as he has everything else.  Please send support.  Please send a good thought.

Please.

These good thoughts and the world’s best team are what arms Marshall’s fight.  Your prayers and good thoughts are the artillery of his war.  They are what have gotten him this far.

And though I find it ridiculous to even worry about something as trivial as money as my heart just aches for my baby and big boys, please send financial help if you can.  Our fourteen weeks at Boston Children’s this year in addition to keeping food on the table and a roof over our heads has consumed all of the savings I had (plus all of the proceeds from the benefit.)

So yes, it’s without shame or pride I ask.  I ask with forgiveness that I even have to.

Because I don’t know how we’ll get through this next hurdle without each other.

And I don’t know how we’ll keep it all together.

And I don’t know what the future holds.

But I do know the only time my heart is at peace is when all four of my boys are under the same roof, in the same place, with me.

As always, thank you so very, very much ❤