Waiting....

I feel like I have composed way too many posts from the Ronald McDonald Room at Primary Children's Hospital.  Definitely more procedures this year than I anticipated!  But I also feel like writing is my way of coping, and right now I need to process.

Today is Procedure Day for Miss Annika.  

Having thoroughly enjoyed her trip to Hawaii, it's time to get back to the business of healthcare, squeezing in whatever is necessary before the new year.  We were asked to report to Outpatient Surgery at 5:45 am in order to get prepped for three to four different procedures.  Glad we live close!  First order of business was a micro-laryngoscopy/bronchoscopy with ENT Dr. Park, just to confirm that her airway is clear of the granulation tissue that accumulated there last spring.  Check!  That procedure finished quickly and everything is fine.

Next up was a visit to the cath lab, overseen by our friend and surgeon, Dr. Mary Hunt Martin.  When Annika saw Mary Hunt, she immediately greeted her with the biggest hug and asked how her dog Comet was doing.  Best of all, Mary Hunt seemed just as delighted to see Annika.  What a huge change from when Annie was brought into the cath lab on Christmas Eve nearly a year ago!  The purpose of the cath lab is to take pressure measurements of the different chambers of her heart, hopefully ruling out restrictive cardiomyopathy as a diagnosis.

The final scheduled procedure is being overseen by our electrophysiologist, Dr. Mary Niu.  Dr. Niu placed Annika's ICD (Implantable Cardiac Defibrillator) last January.  Over the year, we've discovered that Annika's ICD often needs to function as a pacemaker as well because her cardiac meds drop her heart rate.  Right now the ICD paces her left ventricle directly.  In an effort to pace her in a way that better replicates our heart's natural electrical conduction, they are placing an atrial lead today as well.  This sounds fairly minor (just stick in another wire), but it actually means that they will have to surgically remove the first ICD and put in a new one.  That means a pretty sizeable incision right across the earlier keloid scarring and eight weeks of restricted movement.  It also means a pretty lengthy procedure--at least three hours.  

And then, as a last minute bonus add-on, they told us this morning that they will try and squeeze in a cardiac CT scan since she will already be sedated with a large bore IV.  Way too much excitement for me to wrap my head around.  We are already three hours into the final procedure--four and a half hours since surgery started.  Even though I know she is in great hands, I am an anxious MESS waiting for news about my baby!

All in all, Annika handled the pre-op really well.  Perky and talkative, she chatted with all the doctors with an obnoxious amount of enthusiasm for 6 am.  She was a little concerned about saying good-bye to "Fred and George" (the name of her first ICD)--understandably so.  We suggested she name her new ICD "Ron," but we'll see what she decides.  She likes Primary's and is excited to both play Minecraft and have them deliver her food on a fancy tray.  She wasn't even very sad about missing her school music concert or class auction.  I suspect she's going to feel a bit more uncomfortable than anticipated, but she's a tough cookie.  Fingers crossed for a simple overnight stay, then back home tomorrow!