The club we don't want to join

I feel like a broken record saying this but it looks like Avery's going to have to face yet another surgery sooner than we thought.  We had a visit with Dr. Sood, her neurosurgeon, this morning, and due to the size of her ventricles, and the fact that she's been getting randomly sick from pressure in her brain since January, he feels a shunt revision is necessary.  Even though this issue has kept us up at night (literally) for months, we both had hoped he'd say, "just keep doing what you're doing - everything is functioning fine."  Instead, he showed us the most recent scan of her little brain, pointing out that her ventricles (which hold the fluid in her brain) are larger than he'd like.  He explained that the shunt is draining too slowly and a clog is most likely the problem.  The clog is probably tissue forming around the catheter in the shunt.  Tissue forming around important objects in Avery's body is something we're super familiar with... it happens with the little shunts in her eyes, and around her cornea grafts.  It's never good and it's never preventable.  Gravity has been helping her thus far (being elevated when she sleeps), as well as us manually pumping the valve every night and early morning.  However, he believes a serious clog is inevitable, and we're worried we may end up in the ER if we let it go.

A few months ago, while in the waiting room at Children's, we heard a mom referring to her daughter, who was in surgery for a shunt revision, say to Dr. Sood, "we don't want to become members of the 'Shunt Revision Club.'  Basically, some kids get shunts and go years and years without needing a revision, and their revisions are easy and totally successful.  There are other cases, though, where revisions happen multiple times a year, because doing one causes problems that result in needing another.  Each time they do a revision, it requires cutting into her head and a minimum one night stay in the hospital.  After a revision is done, for one year following, there is a 30-40% chance that something will go wrong with the shunt.  These don't seem like horrible odds, but if you know our history with odds, we have reason to worry.  Like always, I hope for the best, but expect the worst.  The Shunt Revision Club seems like the worst.

So, again, I have that numb feeling that is so familiar after receiving information like this.  We are faced with putting Avery through more pain, more anesthesia, more time off school, and more risks.  We have to face a very real possibility that while we are bringing home our second child this fall, we may be dealing with Avery's health issues at the same time.  Two or so years ago, this is news that I'd flip out about.  I'd be inconsolable and hide under the covers for a few hours, then be angry with God for awhile.  Today, I am sad, I am disappointed and scared, and I am angry at God, but I'm handing it.  I'm in control of my emotions more these days because I've had so many experiences under my belt to know that losing my mind will get me nowhere.  I can worry all I want that this surgery will cause more problems than we already have, or that we'll be carting our newborn to the hospital to visit Avery.  But worrying about things we cannot control is useless.  We can be proactive and bring up concerns, which is how we got in his office this morning in the first place, but we can't dwell on the unknown.  I am typing this to also try and convince myself, honestly.  It's hard to believe these words.  I am 110% worn out, and tired of bad news every other week.

The good this week was the fact that Avery started communicating the words, "on" and "off."  She's tried these words in the past, but now she's using them correctly and consistently.  She is so proud of herself and this morning, the first thing she did when she got up was point to my lamp and say "ah," (which is "on").  It's such a small little word, but means so much progress.  And "progress" is a word that Dr. Sood brought up this morning.  He asked us, as he always does, about her development.  We explained that it's still slow, but it is not regressing.  He did confirm something that he has only alluded to in the past.  Something that John and I both figured she had, but never heard him say for sure.  She has a mild case of Cerebral Palsy, or CP.  In some way, it's a bit of a relief to put a reason with the problems she has, but it's never fun or easy to hear your child has a diagnosis like this.  It is mild, and we know that it could be so much worse, but it's hard to swallow.

Please continue to think positively for her ... days like this, I wonder if praying and positive thinking even work, but I suppose that things may be much worse without it!