Tuesday, December 14, 2010

Back to the OR

I got a note from a friend tonight. Her little girl is scheduled for a "routine" surgery in January. What a day to hear that news!

In our little family, we've endured 8 surgeries in just over 3 1/2 years. EIGHT. Some of those surgeries have been labeled as "minor" or "routine." some of them have been "difficult cases." As I listed them off for Shannon, I started thinking. My five year old has had 2 "routine" surgeries. My three year old has had 3 "routine-ish" surgeries and 2 major, "difficult" ones. The thing is, NO surgery is easy, routine, minor, when the patient is your baby. I'm praying for my friend and her little one as I know she prays for mine!

It was an interesting day for the news, though. Today we tentatively scheduled surgery #6 for our little man. Another big one. Another inpatient hospital stay. Much harder this time because he'll be almost 4 and he'll have some idea of what's going on.

You see, our little man was born with craniosynostosis. That's a big word that means sutures in his skull were fused. When Bugsy was born, 4 of the 6 sutures in his skull, the gaps in bone that allow for the head to "collapse" and the brain to grow, were already fused. His skull could not collapse during delivery, there was no room for his brain to grow, and he had no soft spots. Bugs spent the first 5 1/2 months of his life with severe intracranial pressure. He lived most of that time on Tylenol with codeine around the clock, rarely slept, and cried nearly nonstop. At 5 1/2 months he had his first surgery which provided nearly a month of relief...and then it was back to constant pain. At 9 1/2 months he had a second surgery. Since that time he's been relatively pain free, aside from the occasional headache!

We've known since that surgery that he'd likely need another surgery. There have been some large gaps in his skull that haven't filled in. Today we met with his surgeons to discuss surgery to fill in those gaps.

Good news! The gaps have finally begun to fill in on their own! There are just some small gaps remaining, and it looks like they may not need to be filled surgically!  We were really excited and thought we were going to leave the office without scheduling surgery.  Then the plastic surgeon came in.  It didn't take long before he said, "There's no advantage to waiting for Isaac's next surgery.  There's no disadvantage to waiting for Isaac's next surgery."  Basically, through observing Isaac's skull shape and talking with us for a few brief moments, he's determined that the asymmetry of his little skull and the height of his forehead need to be addressed.  We don't even know, yet, what all the surgery will entail, as the surgeons will wait until they see a CT scan, which will be completed about a month before his surgery.  He left it up to us to schedule surgery when it's "convenient" for our family.

Is surgery ever convenient?  Wow.  I don't think it is.  Thing 1's in school, though, and Bugsy will be in a year and a half.  Some quick conversation brougt us to the conclusion that June 2011 will likely be the best time for us.

And so, we begin yet another year "looking forward" to surgery.  We covet your prayers for our little miracle man, for our other children (particularly Thing 1, who will be nearly 6 and will much more fully understand what's going on), and for ourselves as we look toward this next operating room visit.  There'll be a lot more to our "prep" this time, as we'll have to make a 3 year boy and a 5 year old girl understand that even though Bugsy will look different, he'll still be the same little boy.  We'll have a harder task keeping that same little boy calm for recovery than we've had before.  We may even have a harder time watching it all happen than we've had before. 

So again, we covet your prayers.  We've come so far in the last few years with this little guy.  We're hoping this will be our last trip to the OR with him.  But no matter what happens, we'll praise the Lord for the work He's done in our family and the work He continues to do!  Thank you Lord for being You!


kbilley said...

God has great plans for "my Munchkin!" He has been through so much already, but is one strong little guy! You have been a blessing to other families who share your struggles. We will all continue to trust in God's care and safety for Isaac.

sarahkier said...

Your family will be in my prayers always.
Sarah (aka: Wyatt's Mom from CK)

My Life as a Mom said...

Surgery is never easy, no matter how big or small. We'll get through this together.

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