I hear there’s a Benefit today…

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A group of incredible people joined forces to host a benefit to support Marshall “The Miracle” Sepello.

I don’t even know where to begin to thank them.

Every kindness means the world to all of us on this rollercoaster ride as we help Marshall wage his war against congenital heart disease and heterotaxy.

I would give anything in the world to have all of my boys there and more importantly, together. But since we can not be either of these things right now, I am sending my gratitude, hugs, and love to all.

(Please, please send/post pics of this tremendous event if possible!)

OOOooohh and anyone who is reading this is officially and cordially invited to Marshall’s First Birthday Bash to help us celebrate and be properly thanked for everything they have done to help my family.

Extubated!!

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Marshall was taken off of the vent!!!

They did the extubation around 6 a.m. 🙂

He is tolerating it well so far.

He has lots of secretions and has to have chest p.t.  It seems when he struggles, he retracts his chest.  Then they suction.  And I am sure that makes him mad.  So that makes his numbers go up and they give him morphine…

Around and round we go…but at least
Marshall’s coming back!!

Knowing him as I do, he is going to be furious like the Incredible Hulk.  Often after the Glenn they get “glenn head” (a bad headache and extreme fussiness)

Send some good thoughts to him please…

Sending our thanks and hugs!

Take Aways

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The team has finally begun the “take away” process.

They are weaning down the vent and had to suspend feeds in that process (just in case they need to reintubate).

They have taken away the morphine drips and replaced the suctioning chest drains with much smaller ones.

They have moved to bolus Lasix rather than continuous Lasix.

And through all of this, outside of some wacky numbers, Marshall is holding steady. 

Let’s hope he keeps up the good work…

So Much To Be Thankful For

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As I have been sitting here watching my little miracle sleep and recover, I was hit by this wave of extreme gratitude.

While the rest of the world is living their lives, complaining about the weather, hugging their kids, cleaning their houses, kicking back to watch t.v. and other wise living their lives, I am here.

And my goodness I am so thankful for that. 

And I am so thankful for everything that brought us to this very moment in time.

For the Boston team who has given us 8 months and 4 days (and counting I hope) with this incredible little boy.
For every good thought.
Every prayer.
Every hug.
Every kindness.
Every bit of advice, comfort, and support.
Every family member who was there for us.
Every person who cared for my big boys in my absence (and let me know they were ok when they saw them).
Every friend we have made on this journey.

You forever have my gratitude.

Still sedated but still mischievous

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Marshall is slowly being weaned from the sedation.  I stepped out for a (really late) brunch and came back to Marshall in what the nurses call a “Welcome sleeve.”

Seems he was up to his mischievous ways in the 1/2 hour I was out and was pulling at his vent and n.g. tube.

I believe this is his signal that he’s ready to go forward…wink wink…

As for recent developments, the team nearly laughed me out of the ICU these past few days when I told them Marshall needed to be extubate no later than today.

Four days out of my arms is long enough. And I have big boys back home who need me too.

And Marshall is captaining this ship.  The crew’s job is to balance his pain & sedation with wakefulness & breathing without vent.

The diureses process worked so well Marshall is too dry.  His nurse is presently switching hus duiretic meds around and giving him a new shorter acting sedative in preparation for tonight’s…

Drum roll please….

EXTUBATION!!!

Send big thoughts please… my “momcation” needs to end as soon as possible.  All four of these boys, especially my ginger baby, need all the hugs and cuddles I can give them.

I miss them all SOOO much ❤

Happy Progress Friday

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Marshall is shedding fluid like a champ.  And the team has begun the process of getting rid of things.

They took him off dopamine. 

They took away the pacer.

His saturations are great.

His pressures are great.

They also slightly decreased the oxygen in his vent.

And there is mention of getting his chest closed today if he continues on this path.

Thankfully he is also looking less like Frankenbaby and more like our ginger miracle.

Thank you so so SOOO much for the good thoughts & prayers.  They are working and mean the world to us all.  Please keep sending them if possible.  He still has so far to go. ❤

Not Much For News

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My apologies for not updating sooner. My phone is uncooperative and my Internet connection is wacky.

Here’s what I know: Marshall is “stable” and “looks good.” That’s just the team’s opinion.

He is my baby. He has been through hell and it shows.

The good news is things are progressing slowly but surely. And very very late last night Marshall gave us a sign he is fighting his way back to us.

Despite the sedation, the paralytic, and the ventilator, Marshall started breathing on his own last night just around midnight. As I was sitting bedside I noticed that a wave on the vent was different from the others. I immediately alerted his nurse. She tried clearing the machine by unhooking the vent, dumping the water, and then finally accepted he was taking breaths of his own.

But then she walked down the hall explaining in a circular discussion (when I pressed her to let him be) all of the reasons why he couldn’t continue to breath on his own. It was an (insignificant) and additional three to four breaths per minute. Yet she had to “make him stop doing that” with very powerful meds because “now isn’t the right time.” (Direct quote.)

EXCEPT Marshall told us it was time when he started breathing on his own…what irony.

Asking questions about it just to get more information didn’t uncover much. All I know is it is likely best he rests a while longer and he needs his chest closed before they can let him do the work.

So he is still on the vent, his chest is still open (though there is mention of closing as soon as he sheds more fluid), and they have him on a ton of medicine.

Though I know better than to expect anything, he recovered much differently from his first surgery than he is now.

But that surgery was not nearly as complicated.

I have to remind myself of the good stuff often: he is stable and he is in the best hospital he can be in. And he has the best team in the world. Just hours ago they took away one of the meds to see if he starts to breathe on his own a bit.

Pray hard/send big thoughts for the ventilator to go soon please. The ventilator is a necessary risk but the longer he stays on it, the potential for not so good stuff increases.

So here’s the plan I know of so far:

They are fiddling with meds to get the balance he needs to “Free the Pee” with the diureses.

They want to begin feeds today starting with I.V. nutrition followed by miniscule amounts of breastmilk. I tried to convince them to go straight for the breastmilk since it helped him thrive for 8 months ;-).

His super sensitive skin isn’t very happy between laying around and all of the meds. Though it doesn’t take much to cause a reaction, he seems to offer an inflammatory response to things he doesn’t like (sounds like his mom, eh??!)

What I know as his mom is he will hopefully soon be waking up screaming mad (as soon as they let him.) And hopefully HOPEFULLY by this time next week we can be packing up to get home to his brothers.

I miss all four of my boys so very much. It has been far too long since I have held any of them in my arms. And it goes against every cell in my body to have my boys spread over 300 miles apart.

So please, please, PLEASE just pray or send good thoughts or something strong to Marshall. I would give anything for forward progress, lots of freed pee, the chance to ditch some of these meds, they close his chest, that they pull the vent, and that we get to hold him by no later than Saturday morning.

Soooo. Many. Thanks.