The Family

The Family
For Christmas 2010


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We've decided to start at the beginning and work our way forward. You'll have to check back often as we chronicle the last 2+ years.

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Monday, January 24, 2011

Negotiations

When we met with the neurosurgeon the next day, we were honestly expecting the worst.  We had somewhat prepared ourselves to hear that the surgeon had decided to go ahead and try the shunt in Nathan's gallbladder, which would require a very invasive surgery, has a high risk of failure, has low odds of success in someone Nathan's size, and is generally a last resort for any shunt patient.

So we were more than surprised when he told us that he actually wanted to go ahead and do a ventriculoatrial (VA) shunt into Nathan's heart.  Generally, the VA shunt is the 2nd option for shunt placement after a ventriculoperitoneal (VP) shunt.  Unfortunately, because of all of Nathan's heart problems, his cardiologist had always discouraged VA shunts.

First, Nathan suffered from pulmonary hypertension, which was causing his heart already work harder than it should.  Second, the general beating motion of his heart had been altered following his heart surgery in October and the patching of his VSD.  Third, his tricuspid valve, which had been previously damaged and then miraculously surgically repaired, valve was still experiencing some regurgitation from the hypertension.  And fourth, Nathan still had another hole in his heart, this one between the two upper chambers (atria).

So with all of those issues, you can see why Nathan's cardiologist was hesitant to give the go-ahead for a VA shunt.  But the neurosurgeon informed us that he had spent much of Thursday afternoon in negotiations with the cardiologist on how best to proceed.  He had done what he could to convince the cardiologist that the VA shunt was in Nathan's best interest.  Fortunately, the cardiologist agreed. 

However, since Nathan still had a hole in his heart, it would pose a considerable danger to his life if the VA shunt were to be placed.  Therefore, he strongly recommended that the hole in Nathan's heart be closed, which the neurosurgeon agreed was a good thing.

So now they were running it past us to see what we thought of the whole idea.  And honestly, it seemed like a great idea, tons better than a gallbladder shunt!  Then when he informed us that they would need to close the hole in Nathan's heart in the Cath Lab, we became somewhat less confident in the idea.  After all, the Cath Lab was our arch nemesis.

Sunday, January 23, 2011

Decisions, Decisions, Decisions

I don't know exactly why, but it was becoming very important for me to have a full calendar month of having Nathan at home.  Three times now, Nathan had made it to 36 days in a row between hospitals stays.  But none of those streaks had encompassed a full calendar month.  And this time we had only missed it by one day.  But the really bad thing about going into the hospital on the last day of the month is that you're going to miss out on the next month too.

But what was weighing more heavily on our minds was what were we going to do about this shunt problem?  To this point our luck had been very, very minimal in trying to find something that worked.
  • VP Shunt #1 -- Failed
  • VPL Shunt -- Failed, nearly deadly
  • VP Shunt #2 -- Infected
  • VP Shunt #3 -- Failed
  • Third Ventriculostomy -- Failed
As we've mentioned before, with the failure of the Third Ventriculostomy, our choices of viable shunt placements were now down to what could basically be considered to be "bad" and "worse."  And honestly, we were very, very scared and worried.  Either way, we were looking at a very invasive surgery that unfortunately had no guarantee of success.  I don't know which was more sad and disheartening.  The fact that we were facing yet another major surgery or that there was no guarantee that the surgery would work.

So with heavy hearts and an uncertain future, we put our knees on the floor and our trust in the Lord and tried to hope that we could all come up with something that would work.