Hold that CT Scan

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It has been postponed.  Three and a half hours into the npo (nil per os = no food by mouth) period for the CT scan, the docs rounded and said it couldn’t be done.

30 minutes before the procedure was set to start.

 

So, we’ll try again when they are able to fit him in their schedules.

 

While we wait, we’re going to let Marshall have his first taste of solids…

One Night Down

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Marshall’s first night in the ICU with his Milrinone went fairly well.    He is thankfully happy and smiling this a.m. And it looks like we’ll be stepping down to the floor once they are ready for him.   He will have a CT scan midday so that surgeons can get a better look at his extraordinary little heart. Then we will (hopefully) know which direction is best for him.   In the meantime, here’s to hope ❤

8 South Again

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Marshall is back in the ICU.  It is not the best way to celebrate Michael’s first Father’s Day but it also isn’t the worst.

So far, the starting of the IV meds has gone as expected.  Marshall gave the nurses a heck of a time in placing the IVs.  I warned them before they started ;-).

And now he is comfortable and sleeping in my arms after a great week with his brothers (what a sad, very difficult goodbye) and beautiful day in the Boston area.

Hopefully tomorrow will bring some answers and allow the surgeons to weigh in on what the best option is for our little man…

 

Happy Father’s Day

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Since it is Michael’s FIRST, I wanted to be the first one to say it ;-).  His abilities as Marshall’s dad are amazing (and sometimes amusing…my goodness how he makes Marshall laugh.)

All four of the wild boys (and myself) are lucky to have Michael in our lives.
And on a broader realm, all of my children are lucky their dads are really great at being fathers. 

We are all so very thankful 🙂

We hope today is great for all dads, step dads, and like a dads !! 

Everybody’s Hedging

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Yesterday Marshall (again) reminded us that he is the man in command.

He is the number one caller of shots.

He is the ginger little dude in charge.

His follow up appointment with Dr. Friedman and the transplant team left us with a whole bunch of unknowns.

There really isn’t a plan at this point.

It seems all involved parties, a crew of Harvard’s finest, are just waiting on Marshall to see what he’ll do.

Everybody’s hedging.

(If I were a betting woman, I would bet on Marshall. He’s a sure shot. 😉 )

A discussion with Dr. V (one of the heart failure and transplant team doctors) and Nurse Practioner E (of the transplant team) revealed some information but little reassurance. The cath last week showed the formation of the (evil) little collateral arteries which develop when a body has to compensate for not enough blood to the lungs (remember way back when I was pregnant? The lack of these little guys meant Marshall would be able to have his first surgery… ) Luckily, the presence of the collaterals has little affect on Round Two (the Glenn) and/or any other surgeries. And reaffirms my thinking that if the Glenn had happened a bit sooner, perhaps we wouldn’t be here now.  But there’s really no good in thinking that way.

There are so many risks involved that erring on the side of cautious is best.

Needless, back to yesterday: the transplant team needs more information regarding the anatomy of Marshall’s extraordinary heart. The surgeon requested a CT scan to get a better look at the Total Anomalous Pulmonary Venous Return issue. If there is a possibility the pulmonary veins could eventually become stenotic, the likelihood of a transplant diminishes significantly.  So that’s that.

The good news is, Dr V announced that a member of the transplant team is certain he can “make the ventricle stronger” by deploying some more of the magic medical management which brought back Marshall’s smiles over the past week.

So we’re going to try the bigger “guns.”

The wild boys head back to New York tomorrow (hopefully as late as possible so I can soak up more quality time with all of four of my wild boys together).

And Marshall heads back to the hospital Sunday.   Between the ventricle function, collateral formation, and other factors, Michael and I just can’t justify waiting this out longer.

We don’t want to chance things getting worse. And the Boston team knows his heart function will improve once they deploy an intravenous drug called Milrinone.

So Monday he’ll go through a sedated CT scan to get images of his heart.  And another echo at some point soon I hope.

Hopefully by Tuesday we’ll know if he makes the transplant list.

And in the meantime, I can’t thank everyone enough.  From the team here for their work helping Marshall to those sending strong thoughts, prayers, wishes, and positive energies to our little miracle,  I just don’t have words enough to express my gratitude.

My goodness, the support means so  very much it often brings tears to my eyes (the good kind of tears :…-) ).

Sooooo I will send the thoughts & prayers back to you tenfold if you promise to please keep them coming…

The fragility of life and delicacy of Marshall’s condition

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A wise person taught me that it is easier to ask for forgiveness than it is to ask for permission.  So stop reading now because this is where I beg for your forgiveness. 

Breathe.

Thirteen days ago we received the very unexpected “it could be worse” news.  And I haven’t mentioned it on the site because I hadn’t spoken to the big wild boys until last night.

And it took ten despairingly tearful days to find the words to tell only family.

The cath was brutal on Marshall.  And really tough on the rest of us.  It confirmed what two previous echos had indicated: Marshall’s only ventricle was not pumping as it should.

Marshall was/is really really sick and in severe heart failure. 

Michael and I lived near sleepless in a state of suspended disbelief.  Marshall looked so healthy and strong.

And deep in my own heart, I just wouldn’t accept losing him so easily after I had fought so long and hard for him.

Thankfully, the magic of the Boston team managed to slow down the sickness of our baby’s heart. Marshall remained inpatient until yesterday.  It took a ton of meds to stabilize him.

And during that time we were bittersweetly consulted by the heart failure and transplant teams – a remarkable team of brilliant people dedicated to preserving the lives of babies and kids like Marshall.

I will leave out the details and likely won’t mention them in his book.  Some things are better left unsaid.

And some things I don’t have enough words to express.  Like how incredibly thankful I am for the nurses and doctors who got us to now.

Our little miracle is much happier. So far he has responded pretty well to the meds.  We know this won’t last for long but it is a small victory.  And those are what I live for these days.

From what our team has told us, we may be able to spend the next few weeks discharged locally.  And by some massive grace of medical magic, we may make it home before we have to get him rechecked.

Or, more likely, before his heart further deteriorates and they put him in the ICU. 

Breathe, Rebecca…

So I steel myself in today.  My three big boys are happily splashing in a pool.  My baby is sleeping poolside in my arms. 

And my husband, my mom, & my aunt are here for all of us.  We have a meeting tomorrow to make a plan for going forward. And Dr Friedman is following up on Marshall’s heart.

Then maybe just maybe we can go home for a little while.  Knowing Marshall as I do, I have slowly accepted things could go either way at any minute.

So if you don’t mind, maybe send some strong thoughts to my boys (all five of them including Michael 😉 ), our family, and most especially Marshall to help us through whatever happens next.

Given the delicacy of the situation & fragility of life, I thought it best for the big boys to see him while he is doing well so that if the almost worst happens, they won’t see the really bad stuff.

Breathe,  Rebecca…