Mighty Heart Update

Today, we went to the doctor to see if the efforts during the Cath Procedure paid off.

To make a long, agonizing story short, they did. Sierra's pressures are holding steady.

Someday she will need open heart surgery.

But that day is not today. And it's not in the next six months.

And I'm hoping it's not for several, several years.

Thank you for your prayers and support, it's meant so much to our family. And let me tell you, prayer works.

Remember when I said her ratio number needed to be under 1.5? And everyone was praying?

It was .92. A miracle.

You folks are an amazing blessing, our angels on this earth. Thank you!

In PICU, after some sleep

Ok, I've finally had some sleep, so I can probably be a bit more coherent.

Sierra, when she was two, under went a procedure called angioplasty - you hear about it a lot for older folks with hardening of the arteries. Basically they needed to widen the area near her pulmonary valve and to do so they insert a ballon inside the catheter, inflate it, basically stretching that area.

There's a good article with a great diagram here on all the anatomy around her kind of heart: http://med.umich.edu/Mott/congenital/services/patient_con_pul.html

About an hour and a half into her procedure, they called us into the viewing room of the cath lab. On the screen was her heart, the dark thread of the catheter on the screen. They'd squirt dye and you could suddenly see the moving heart, Sierra's mighty heart, clearly on the screen. The pulmonary artery, The one marked as 1 on the image in the above article, kinked in severely, like a tight corset around a rotund woman.

This is what they think is causing one side of her heart to over develop, the muscle to build up because it's having to work too hard.

A bulky heart muscle, particularly bulky on one side, is a terrible thing, it's what used to kill tetralogy patients. The muscle gets too big and eventually fails.

We left the room stunned, because if angioplasty fails, then we were in for valve replacements, and that means a lifetime of replacements.

But so far the news is good. It looks like it worked, just as it did when she was two, after our first miracle.

I'm here with her, grateful, grateful.

It will be so nice to get back to normal - or at least as close as we get to it.

In PICU, resting

Sierra is resting finally, having been pretty achy for the last two hours.

We had a rollercoaster day today, first good news - the wacky vein didn't seem to be a problem. But there was a whole differ problem, a severe narrowing by the pulmonary valve.

The problem is the pressure against that valve was 75% too high. Very long story short, the doctor ballooned it and he is cautiously optimistic.

I'm as tired as she is, going to crash. Just wanted to get an update out

Thank you for the prayers. Depending on the word we get tomorrow, it looks good.

Almost home.

Through the prelims

Today we got through the prelims : blood work, x-rays, EKG. It was over fast and wonderfully uneventful.

The family all made it in. I have a terrific family. I have to fight my desire to curl up in a tight ball around my girl and just be alone. At times all the attention is simply exhausting, I feel like a terrible host at the worst theme party ever. The tiniest things - making beds, getting drinks, dealing with food or such overwhelm me.

But I do need my support system because the wind blows hard.

Tomorrow we go in. Sierra says she's not scared, has her courage at the ready. I'm not scared either either, just a little worn around the edges.

Maybe more than the edges.

Mighty Heart the night before

It's raining, that long draping curtain of rain that lays over the sky in a billowing arc, the horizon disappearing in the folds of gray.

Seems like perfect weather for this night, seems each time we've had a big medical procedure it's rained. I appreciate the emotional symmetry of rain, it allows me to sink into thought. A wide blue sky would seem like a contradiction, or worse, maybe like what was happening here was being ignored.

Silly to see the world this way. And yet the rain falls, the clouds bow their heads and reminds me we are all in this together.

Our bags are packed, we're ready to go, as the song goes. Sierra is in good spirits, Adam and I are weary, Mireya is excited with all the company.

I'm just tired. I'm looking forward to a nice long sleep. On Friday.

I'll be updating here. Thanks for thinking of us.

Sierra In Hospital Next Week

Everything is set. We go in for X-rays and such on Tuesday, spend the night at the Ronald McDonald House (every time I buy french fries at McDonalds I remember the first time we stayed at the House in San Antonio). Wednesday we head over to the hospital.

Sierra is late in the line up and isn't allowed to eat from midnight on. She'll be there over night.

Family is all coming in, over a dozen people will be there, which is crazy, because it's not like this is the Big Thing, if the Big Thing even happens.

But I'm very glad they are all coming anyway.

I know, I know. This procedure isn't big or dangerous, yet I feel raw anyway. Inside her chest is the mystery that they will probe, then reveal what lies ahead for her, for us.

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On the positive side of things, Sierra's vertigo is improving and the doctor has said not to worry about any of the scarier things often linked to severe vertigo.

"It will resolve," he said to me, looking me in the eyes in that way doctors do when they are both emphatic and comforting.

Resolve. Yes, I thought. Everything does, in the end, resolve.

Update on Sierra or how vertigo is driving me crazy

The date for Sierra's test has come and gone, thanks to her extreme attack of vertigo. In case I haven't mentioned it to you (I've lost track of who I sent a note out too), she had an extreme attack of vertigo, to the point that she couldn't walk. At. All.

We tried numerous treatments, but nothing worked. Finally they put her on steroids and it was mostly gone in three days, but now it seems to be coming back a little bit. Vertigo is notoriously hard to get rid of, sometimes taking just a week or two, but sometimes attacks linger for months.

The doctor wants to do an MRI. I want to try some alternatives first. She's already had a CT scan which exposed her to the equivalent radiation of 50 x-rays. Sue me if I want to try alternatives.

I spoke to someone who talked about the US medical emphasis on expensive diagnostics that preceed general treatments, even relatively low risk treatments. It's interesting and not something I put much stock in before this experience. But now I wonder about the logic. When symptoms say you have a cold, they don't scan your bone marrow for luekemia. The fact that steroids worked indicates inflamation is a factor. Anti-inflammatories should help then.

Anyway, with all that I cancelled the test. We agreed that we couldn't handle that stress. She was walking the Friday before and we just wanted to be normal after two weeks of having our daughter basically an invalid.

Now they want to do the test in January, but I'm going to request we push it to February. Remember, they won't be able to do anything about this until the Summer anyway. What is the point of rushing?

I am calling tomorrow. We'll see what they say.

Thanks to everyone who has kept us in your prayers. Sierra is walking and somewhat normal (she is 13, afterall, one must be realistic). I'm hoping we can get through this relatively intact.

My very best to you and yours...