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Bad night and another desat…Marsh woke with a severe headache at 3:30 a.m. and his heart rate dipped to 51 around 4 a.m. Tylenol helped the headache but then his last iv went bad so they had to poke him 4x.

His heart rate has stayed in the 50s since.

Bnp is up to 560+/-.

Dr. Egan has already been in. He is in clinic today and will return later

5 years ago today

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Dr Smith stepped aboard the SS Marshall heart disease “ship” and determined this was not a case of hypoplastic left heart and was a case of heterotaxy.

Our only goal is to keep the ship steady despite waves of rapid change.

It has been a long five years and I would do it all over again just for another five years with Marsh💖

Another Update from the PICU

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This has been the hardest hospitalization yet. I have not seen him this sick in all of his life. I can officially say that this “expensive, noisy hotel without a pool” is breaking our hearts. So please pardon the silence of the past few days..

For almost two days Marsh’s heart was > 200 beats per minute. When he wasn’t sleeping, he was vomiting and coughing.

For three days Marsh’s heart was between 130-170 beats per minute. When he wasn’t sleeping, he was coughing or gasping for air “I am a fish out of water.” Direct quote.

His baseline resting heart rate before last weekend has been in the 90s.

Cardioversion nightmare of Thursday blasted Marsh to borderline bradycardia in junctional rhythm which creates a slew of other problems Marsh doesn’t need.

His heart doesn’t seem to have the capacity to perfuse efficiently when he is up and moving. And it mostly lacks the ability to accelerate/compensate with motion. When he is sleeping he sinks to the 50s for o2 saturations and heart rate. And when he eats or system digests, the perfusion doesn’t sustain his o2 sats.

If that isn’t the worst, this is:

His chest is so filled with fluid that he gained 6 pounds since his last cardiology appointment in September. I can barely hold him standing up (he is too heavy. I used to carry him for miles!) And he can not stand on his own because of the 6 extra pounds on his core.

But he has been diuresing well the past two days. 🤞 that continues.

His veins are so fragile they can not get daily labs. And he fights so hard that what they can get is generally not enough. Marsh is wise enough to ask everyone who comes in “Is it going to be a poke?” And is so wiped out and traumatized that after attempting the poke/s, he sleeps for hours.

Daily human functions (eating, eliminating, moving position) make him winded and instantly tired. He can not stand on his own two feet especially with ivs in each.

But he will. He just needs time. And wants to go home. He is already making plans for getting out of here.

But despite all of the events of the week, Marsh is himself…the happiest person I have ever known (except for the grumpy/owie moments.)

Mind blowingly, entirely, completely his captivating little self.

The nurses here are great and love him.

The attending doctors here are great and love him.

Four cardiologists are great and love him.

Being close enough to home for family members, loved ones, and friends to visit is priceless.

If anyone can turn this thing around, I know it is Marsh.

I am just so thankful for this beautiful boy. And any sadness I feel (or that slips down my cheeks) is for purely selfish reasons.

He is a gift. 💖💖💖💖💖💖

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Dr. Smith was here at 6 pm reviewing yesterday’s events. And stayed for hours.

Dr. Smith is convinced that if anyone can turn this around it is Marsh.

Marsh had a mostly quiet night. The only change is they had to go up on oxygen. Xray showed no change from yesterday. Waiting for labs and rounds now.