Friday, December 02, 2005

Waiting Game, Part Deux

We finally connected with E's lead neurosurgeon last night. Bottom line: January is likely the soonest the surgery will take place.

January? *Sighs and lowers her head* Another month?

Another month.

The grateful mom side of me is thrilled we'll have an uninterrupted holiday season. The worried mom side wants the surgery over with yesterday so we can learn what the universe has in store for us this time. The protective mom part of me stares at the phone incredulous.

But, doc, I want to say for the umpteenth time, we've first-hand knowledge of an aneurysm rupture. We've lived the downsides.

There was that bright humid day in July 2001 when we raced after that helicopter, wondering if E would still be breathing when we arrived at the hospital. And the chaplain who met us at the door. Not to tell us that she'd died, as we feared, but to tell us she was very, very sick.

We prayed by E's bedside that day and for days to follow, not knowing if she'd awaken from her coma, not knowing whether she'd recognize us if she did. Weeks later, we held E's hand as she pulled herself up to sitting for the first time, too weak to stay up more than a second or two because her muscles had atrophied from two months in bed.

Four years E has traveled this road, re-learning how to sit and stand and walk and talk. Four years, doc. Four long years. Knowing the downsides, you'd think clipping an existing aneurysm would be considered an emergency.

It's not.

Seems so counter-intuitive, hearing the doctor say the clipping of E's aneurysm is considered an elective procedure. Yet, the fact is--and this is the rest of what the lead surgeon reminded P of yesterday--the risks inherent with this type of surgery are extremely high.

Preparations must be deliberate and planned. All possible complications--however remote--need to be investigated beforehand to increase E's chances of success.


Counting down from ten to one.


Reminding myself that our children are on loan to us from God. Praying that the last red flag was raised because docs needed to know about it. And have time to investigate it before something awful happens. Because E's journey here on earth is not yet over.

Here are just a few of the very real risks inherent in the clipping of a cerebral aneurysm:

* E could bleed out during the procedure, the aneurysm rupturing too quickly for docs to react.

* The procedure could result in stroke or seizure or both during the surgery, or in the days immediately following the operation.

* The kidneys could be compromised because of the stress on her system.

* The surgery itself might raise E's blood pressure dangerously high, resulting in another kind of bleed or rupture.

* The surgery could introduce enough tissue into her internalized brain shunt that it becomes plugged or infected within days or weeks after the surgery.

* The surgery is long--every bit of 6 hours--increasing the chance of complications.

* Add to these risks the fact that E is a primordial dwarf, one of a very very small group of individuals (less than 50 known individuals exist world-wide with her type of dwarfism) with health issues that are yet to be fully understood.

It's sobering seeing this list on paper. And a reminder to all my mom sides of how blessed we've been to have come this far. Given the risks, I praise the fact that E's physicians are willing to take them.

And respect their need to take all the time they need to be prepared.

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