Surgery this week... and an anniversary of sorts

On August 25, 2004, Gracie was admitted to the hospital for scheduled open heart surgery - - an ASD repair and mitral valve repair. As heart surgery goes, not too complicated (although when that surgery is for your child, it's all too complicated). We were told the average hospital stay was 5 days... we braced ourselves for "more than average" given all of the intricacies of CHARGE Syndrome and expected that Gracie would be inpatient for about 10 days. Ten weeks later, she was discharged... with a 'repaired' heart, an internal pacemaker and a tracheostomy. All things, for the most part, went as planned on August 25, 2004... but the days that followed brought many twists & turns, few ups, many downs, excruciatingly terrifying moments and agonizing decisions. I don't dwell on the date of August 25th (it does live in my memory) and I am not particularly superstitious, but I do have a "thing" with dates.

So, when I met with Gracie's surgeon two weeks ago to discuss her pacemaker generator replacement (I always called it a "battery"... who knew? ) and he gave me two dates - - August 25 or August 28, I jumped on August 28. He noted my preference and said his office staff would call and let me know. I did not tell him that it was the "anniversary" of her first surgery, although he had her chart in front of him and quite possibly realized. I just explained that it would be better for Gracie and school, therapy appts, John's ability to be around more over the weekend, etc. I did not breathe a word about my sheer terror of having another "August 25" surgery... but in the back of my mind, I was thinking, "why on earth should we tempt the 'date fate'"? So, when talked to his office and they confirmed "Thursday, August 28th," I was so relieved. And, to be totally frank, I am not sure why. The 28th was no picnic four years ago either. But, I associate the 25th with "before her surgery" and "after her surgery."

The bulk of Gracie's complications were not related to her heart at all. In fact, the issue was her delicate airway that was further damaged by the ET tube (the ventilator tube) and once she went into respiratory failure, she became completely dependent on the external pacemaker and, thus, was implanted with a silver-dollar sized pacemaker on September 8th, 2004. The trach followed on September 15th.

I will always wonder in the back of my mind what that 10 week stay did to alter her path... how much different would she be developmentally had she not been deprived of oxygen so many times? Or had toxic CO2 levels? What if she hadn't been so heavily sedated for three weeks? What if she hadn't needed her trach? Would she still have needed yet another and another open heart surgery? What if... what if...? I will never forget the four failed extubations, the look of sheer terror in my husband's eyes when he was always my pillar of strength, the crash cart that sat next to her crib and then just outside her room for over two weeks. I will never forget holding her as she slowly turned a dusky grey and started slipping away from me... over and over... as we tried to put off the inevitable trach (the trach that was supposed to be "temporary" and is now, based on three opinions, a likely "life sentence"). I will never forget not seeing her face for three weeks because she was intubated and covered in tape to hold the tube in place. I will never forget any of it. But I don't think about it too regularly... if I did, I'd be certifiable.

I think of it just enough to remember how far she's come. I think of it to remember how we got to the other side of it all. I know that I can't change any of the things that happened. I can't turn back the clock and make people do things differently than they did then... and there were some mistakes made, I am quite certain. Nothing will change that, though. Instead, I marvel at where she is today given what she's been through in her life - - her birth, the NICU, the PICU (repeatedly) and what she's been through since those ten fateful weeks. Her road has been bumpy at best... with many other medical struggles, both GI and neurological.

I marvel at where she is today because TODAY (Sunday) she spent over an hour in her gait trainer... happily. TODAY she wore her glasses for over twenty minutes before she threw them off. TODAY she wore her hearing aid and sat independently on the floor while we played finger games. TODAY she played at her bar and bench, side-stepping back and forth, standing up and sitting back down for over a half an hour. TODAY she protested because I gave her (what I thought was) much needed down-time and she was bored. TODAY she gave me some doses of "challenging" behavior because now that she's doing more, she's got more attitude! TODAY, she blew (actually, threw) Preston and me kisses. And, TODAY, when she was saying "bye" to her daddy for the week, she signed "I Love You" without any prompting - - she just waved and signed "I love you." She's happy, she's super loving and social, and she's growing, changing and making great strides each day. I choose to dwell on that.
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Please think of her this Thursday as she goes in to have her pacemaker generator changed. For all intents and purposes, this is a fairly "routine" procedure (a surreal thing to say about my five-year-old and her pacemaker) and barring any complications with the leads (the electrical wiring that goes from the pacemaker to her heart), she should be in surgery less than an hour and in the hospital two days.