Well, that was fun!

Thank you to everyone who prayed for and sent well wishes to Avery these last couple of days.  It's been chaotic and difficult, but I'm glad to say we're home after just one night in the hospital and Avery is well again.

When we woke up Tuesday morning to the sound of Avery getting sick, neither John or I imagined where we'd end up by the end of the day.  She's had these intermittent episodes since January - it is why we scheduled the shunt surgery on June 12th - but her body had it's own agenda, as usual.  I feel guilty that we didn't schedule her surgery sooner, or that I didn't take her into the hospital right away yesterday, but we see this kind of "episode" so often lately, that we sometimes second-guess whether it's going to pass.  Unfortunately, yesterday's was the most serious since December 2011, when she first had to have her shunt placed.  When the pressure from extra fluid builds up, she gets extremely lethargic, cannot lift her head off the pillow, is very irritable and sensitive to any movement.  If she does try to move a lot or take a drink of water, she vomits.  For anyone that knows Avery, she's never down and out like this, so it's unsettling to see.  This typically goes on for 3-5 hours, and then she magically snaps out of it and is back to normal.  Her body usually just needs to regulate the fluid that built up in her head, and get rid of the massive headache that it causes.  This time, her shunt had completely stopped working (which we found out later), so she did not recover.  A few weeks ago, her doctor warned us of this happening, but there was no way to tell how soon it would, so scheduling surgery for June wasn't that odd.
By 2:00pm, there was no improvement, and I called the doctor's office and was told to bring her down to Children's.  Luckily, my mom had just come over to help me out, and John would have to meet us down at the hospital.  I instinctively packed an overnight bag because I knew where this was going.  When we got down to the hospital, neurosurgery had anticipated the inevitable as well, and sent us for a CT scan and some x-rays to get current images of her brain.  She threw up twice in the process of getting these, which panicked me even more.  She hadn't kept any fluid down yet, which is totally unnerving for any mom.  I was so thankful my mom had come, because someone was there to hold her hand while she got her scans - my pregnant self had to wait outside the door, listening to Avery cry.  She was so miserable and it broke my heart.  This, and the fact that both the x-ray tech and the CT tech asked me, "when was her last shunt revision?" as if I'm a pro at these.  And the sad thing is, they are used to asking shunt patients this question because multiple shunt revisions on one child are so common.  The aforementioned "club" I was dreading.

Then, followed the worst test ever.  It's one we've experienced three previous times, but it's always awful to watch.  They have to draw fluid off the valve (to test the pressure, and to get rid of some of the fluid and provide relief) and they do so by inserting a needle right into her head with tubing and a syringe attached.  The first time she had this procedure, it was a spinal tap when she was a newborn, being diagnosed with meningitis.  I wasn't in a good place at that time and couldn't watch, so I left John to do it alone, which is something I've always regretted.  The first time I witnessed this test was a little over a year ago, before her shunt was placed and she was just as sick as she was yesterday.  It's quite upsetting, but we know it's the only option.  This is when you have to put your big girl pants on, hold your daughter's hand and calmly talk her through it.  What upset me just as much as seeing my child screaming on that table, was knowing my own mom was sitting right behind me, watching this for the first time.  My mom is aware of all Avery goes through and there for us all the way, but normally doesn't see the really bad stuff firsthand.  And I know she worries about me, so I was sad that she had to see that.

They were not successful in drawing any fluid off her valve, which meant it was not functioning.  So, they called her neurosurgeon and boarded Avery for surgery in the next hour, at 6:30pm.  They are an amazing team there, and they always make us feel very confident in them taking care of her, despite how quickly the decision had to be made.  They know of our past experience with Avery's first brain surgeon and her horrible infection, so they do what they can to reassure us, but they still have to say, "with any surgery, there's a chance for infection."  The PA told us we have every right to be scared.  This is brain surgery.  Although we've gone through it many times, it's still hard to wrap your head (no pun intended) around the fact that your baby will have their brain operated on, and be safely handed back to you afterward.  This one was the most rushed too, so we had to make sure we explained her most recent eye precautions to the rest of the OR team checking us in.  The surgery was very quick.  Just as he suspected, scar tissue had formed around the tubing that drains fluid from her ventricles, so he removed it and replaced it with new tubing.  This is the sucky part.  Every time this is done, your body treats the new part as a new foreign object, and basically wants to attack it.  Great for a cut or common cold, but bad for shunts.  Then the thing clogs again, and you're back getting another shunt revision, and so on, and so on....
He did explain to us that there's another possible option if this keeps happening.  It's a different kind of shunt, and the risk of failure is much lower.  The problem is, she has to be a little bit older (closer to 4), and they have to do some tests to see if she would be a candidate.  And even then, it still is not guaranteed to work.  Nothing is, I suppose.  But it's an option, and we'll cross that bridge when we get there.  We went up to her room (private, thanks to being a squeaky...annoying...begging wheel), and waited for our little trooper to come out.  Remarkably, considering the pain associated with this surgery, she had a pretty great night, only getting up a couple times.  I think she was more annoyed with the IV, bandages and wires all over her.  I always dread staying overnight at the hospital, and even though John insisted I go home and sleep while he stayed with her, I couldn't leave my baby.  She is now old enough for a 'big girl hospital bed,' so I was able to sleep right in the bed with her.  Although the constant interruptions from nurses and beeping of her monitors sucks, I have to admit it was one of the easier times I've had staying.

By 3 am, she was trying to talk and get up.  She slowly but surely came "back to Avery," a sleepier version of Avery, but nothing like the day before.  There is nothing that makes us happier than seeing this transformation.  (See pics below - she also was fascinated by the little red light on the pulse monitor attached to her toe, and kept looking at it, saying, "off," as in "turn off the light").  They needed to monitor her numbers for awhile today, but she was good to be discharged by 3:30pm.  When neurosurgery went over the instructions for her incision, it was the most upset I felt for two days.  The memory of what we went through with her first surgery's infection will stay with me forever, and I'm so scared of it happening again.  It's hard to believe they let you take home this raw, brand new head incision, and wash it and lay it on stuff that's not sterile, and it freaks me out to no end.  But, they assured us it was okay and reminded us of what to watch out for.  The incision is bigger than we expected, and they took off more hair than they expected, but it is what it is.

So, we're back at home and trying to recover.  I have to admit, this all would probably be easier if I weren't pregnant, but I am!  A thought kept popping into my head (rather, it kicked me in the tummy) over the last two days: "you have a second one coming." You will soon be doing all of this with two.  Again, cross that bridge later...I just hope and pray that we are not back for her brain anytime soon... And hey, now we can cross this surgery off our list from June and maybe have an easier summer.  Hopefully.