The Family

The Family
For Christmas 2010

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Wednesday, May 26, 2010

Trying to Come Up With a New Plan...Again

The weekend Nathan was admitted to the hospital happened to be the Friday of Memorial Day Weekend.  So we had a really, really long time to think about Nathan's shunt problems.  Which was both good and bad.

It was hard having Nathan in the hospital again.  And it was especially hard having him with an EVD again.  But most of all it was particularly hard not having a plan on what to do next to finally take care of these blasted shunt problems.

At the same time, though, it was nice to have the extra time to really, really think about things.  And there was a lot to think about.  And some of it was heavy stuff to think about, too.

Having the shunt fail again was completely devastating.  This shunt was supposed to work.  This was "the golden shunt."  Since we had previously exhausted all of our good options, we were at a complete loss of what to do next.

When we met with Dr. Walker, he mentioned a ventriculocholocystic, or gall bladder, shunt.  They are quite rare, and Dr. Walker said that he had never done one in anyone as small as Nathan before.  And when you factor in how many procedures Dr. Walker has done, that is making quite a statement.  And throw in the fact that it would likely be very, very dangerous, we were quick to put that one near the bottom of the list.  

He also mentioned a ventriculo-ureteral shunt, or placing the shunt into the ureter, the muscular tube that connects the kidneys to the bladder.  You don't have to worry about absorption with this type of shunt.  Instead, the patient just pees off the excess fluid.  But, especially in someone as young as Nathan, you would have to watch electrolyte levels due to all of the urination.  So maybe a better option, but still not a great option.

All of this weighed heavily on our minds and spirits.  We weren't really worried that Nathan was going to die, but rather the quality of life he was going to have.  Was he destined to be stuck in a hospital room draining into a bag forever?  Would we ever get to have him at home for more than just a few weeks?  These were all questions we didn't have answers to.

So in an effort to seek some type of spiritual guidance or inspiration, Bekah and I went together to our church's highest place of worship.  There, we were reminded of the bonds that we share with each other and with our son.  And that he will always be our son in this life and in the next.  We remembered the blessings and promises that the Lord has promised to the faithful.  It was nice to regain perspective, have a quiet place to think and pray, and be able to spend a little time together as away from our problems as we could get for about an hour or so.

We also decided to spend the weekend brainstorming as many ideas as we could that might be helpful to our neurosurgeon.

First and foremost, we wanted the cardiologist to perform another echo on Nathan's heart to see if there was any improvement that would permit the placement of a VA shunt.

Personally, I came up with what I considered a great idea that I called a "branching shunt" (check out the diagram below):

Our biggest issue with the shunts so far had been Nathan's inability to absorb the CSF.  Once his body had absorbed all that it could, it would just build up until the area was full and cause the shunt to back-up and stop working.  So under my idea, if the distal end of the shunt were to drain into two separate places, if one got full, it could drain into the other.  And then hopefully, before that spot got full, space would empty up in the other spot.  And it could just drain back and forth like that forever.

And those two things were pretty much all that we could come up with.  So we also started praying that the surgeon or one of his colleagues could receive inspiration on something that would help Nathan and give him the best chance to have a normal life.

To us it didn't matter who got the epiphany, the revelation, the inspiration, or whatever you want to call it.  Just as long as someone got it and that Nathan would benefit from it.  That's all that mattered.

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