Friday, March 11, 2011

Selah's MRI Results

Thursday (March 10) morning at 10AM, we met with the craniofacial reconstructive surgeon, the neurosurgeon, and a team of other medical staff to receive the results of Selah's MRI and CT scans.  We expected this meeting to be an opportunity for the team to construct, review, and explain the plan for Selah's case.  What we didn't expect was to be told by the neurosurgeon that he recommended Selah have brain surgery the following day due to a massive brain bleed that was discovered on the in-depth MRI.

Matt and I asked if we could delay the surgery until Monday, March 14 (instead of Friday, March 11).  The neurosurgeon said that he could do the surgery on Saturday or Sunday as well.  That signified to me that it was something urgent, but the neurosurgeon said it wasn't an emergency, as he would have done it immediately if he felt it was an emergency.  A nurse will be calling Friday morning (this morning) to let us know the time/date of the surgery.  (She needed to review the neurosurgeon's schedule and decide what would work best for everyone.) 

There's a huge collection of blood on the lower right side of Selah's brain that has caused that portion of her brain to be teeny tiny, as there is no room for both the brain and the blood.  (The blood is between the brain and the skull.)  The brain cannot grow, as there is no space, and the blood collection is crowding the rest of the brain as well.  They need to drain this blood, and they'll do so by inserting several catheters into Selah's skull, directly into the blood collection, then they'll drain the blood over a period of days in the hospital.  They hope the brain will stop bleeding, and then without an active bleed and the current blood removed, Selah's brain will have space to grow.  (They believe the source of the bleed is a vein that is torn.  I'm not sure how they'll fix that.)

It was also discovered that Selah's shunt is draining too much fluid from her brain too rapidly, so they will need to do a shunt revision.  They'll replace the shunt with a programmable shunt that can be adjusted to drain fluid at a rate that works best for Selah's hydrocephalus.  They will most likely revise the shunt at the same time that they place the catheters to drain the blood collection.

They said to expect a minimum of 2 days in the hospital, but to plan for up to a week, depending upon how Selah does.  They're not too concerned about Selah's reactive airway with anesthesia, as they'll fully intubate her and the ventilator will provide lung support, so hopefully that will keep Selah from having any blue episodes from lack of oxygen.  When I asked if we should wait longer to make sure Selah's lungs have completely recovered from RSV, the neurosurgeon said no, the blood needs to be addressed now. He said that if Selah's lungs still have lingering RSV issues (RSV affects lungs for up to 8 weeks), she will have a harder time getting off the ventilator, but that risk is less than the risk of the brain bleed, so this must be addressed now.

All of us feel a little nauseated over this, as it's just really hard to be in such a vulnerable position so soon after Chrissie went to live with Jesus.  It's hard to just trust that everything will be OK because that's not the way it always works out, no matter how much we pray, no matter how much we believe, no matter how much we claim life, healing, and health in Jesus' name.  Our God is the one in control, and we are not.  He is sovereign, and He has asked us to walk this path.  Again.  God knew all of this before He chose to place Selah with our family, and He has a plan in this.  We just have to trust that His plan is best, no matter how it turns out.  That's hard.  So very hard.  But God never leaves us, He never forsakes us, He gives us a peace that surpasses understanding, He gives us strength, for when we are weak, He is strong.  How could we ever get through this without our Rock? 

In addition to the immediate needs of addressing the brain bleed and the shunt revision, Selah has numerous other brain issues.  One of these is that Selah's brain is being pushed down into her spinal column/cord, but this might be due to the lack of space in that lower right cavity of her skull.  They'll have to monitor this after the blood collection is removed to see if that relieves the problem. 

The technology of today completely blows me away.  The CT scan of Selah's skull looked like real photos of what her bare skull would look like without a scalp and hair.  Crazy.  The craniofacial surgeon said that it will take atleast 2 major surgeries to fix Selah's skull, and those will occur most likely at the age of 10 months and then at 11 or 12 months of age.  (That means around August for the first skull surgery and September-October for the second skull surgery.)  Selah's skull issues are rare and only happen in less than 5% of cases.  Selah's skull will need to be cut all over in order to fix her skull shape, and this is necessary for her brain to be able to grow and develop the way it's supposed to. 

We are so grateful that Chrissie has left us with a legacy of prayer warriors.  This is such a scary, unknown time for us, as we walk a new path of special needs/high risk with another baby girl whom we love dearly.  Selah's been with us four months now, and she's been such a blessing to each of us.  She's such a special miracle girl who every member of our family has a special relationship with.  Gosh, it's just hard to imagine how we'd survive if we lost another baby girl.  We must walk in faith that whatever God's plan is, that it is not a mistake.  He loves us more than we can fathom, and all our days are written in His book.  We praise Him for loving us, for trusting us, for holding us, for teaching us, for molding us, for enabling us to walk His path.  Even though the path is narrow, and often times rocky, there's no other path we'd rather be walking.

Thank you for praying.  We are grateful.

PS  Once the surgery is scheduled, I'll let everyone know via the blog.

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