The Good, The Bad, and the Cutie

When we entered into this adventure, we expected some bumps.  We had read enough stories of brave little heart warriors who underwent similar surgeries to know that something scary was bound to happen in the days following.  We prepared ourselves and we leaned on those same stories' outcomes of happy, healthy and sometime naughty (you know who you are) children years beyond The Big Scare.  When we were moved to the step down unit, we were surprised.  The Gracer was recovering without a hitch, and we were being told it looked like we'd be on our way home soon.

Well, we let our guard down.  We should have known that part of the initiation of Parent of a Heart Warrior is to break you down to the point that all you have to hold you up is your belief in greater powers at work and the love of those around you.  I guess in order to properly parent these amazingly strong souls, you need to lead by example and exercise your own souls.  This weekend was our basic training.

As you know, we moved back to the CICU yesterday.  The move itself was a rough one because Grace cried - hard - and continually pulled her oxygen out of her nose the entire transition down the hall.   While they were setting her up on the ICU monitors, she cried hard and long enough to turn a nice shade of blue.  This coloring was fleeting, but was obviously unsettling.  Somehow, from that walk to the CICU, she turned into a really sick kid.  We knew this was the case, but she looked it.  She was puffy like she had been blown up with helium, she was so pale and mottled, and she just didn't look well.  From that point on, it seemed like we have been on a crazy ride of ups and downs.  Just when we’d get hit with something good, we’d soon hear something bad, and vice versa.

When we arrived, they put her on medicine geared to help the pressure system in her heart work more efficiently.  This was all IV meds, and her IV was on its last legs.  Because her veins are so small, getting a new IV was going to be difficult, so if this one didn’t hold up during the night, she was going to have to get an emergency femoral central line put in under sedatives which would be taxing on her sick heart.

While we were waiting for those medicines to kick in, we noticed a facial tic that Grace kept doing where her head and mouth would jerk.  It looked like Tourette’s and totally freaked us out.  We told the nurse a few times that we were noticing a weird tic and it was fairly frequent.  She kept saying it was just her breathing catching up after a good cry (she said this without looking at her).  It continued long after she calmed down and was happening 3 times/minute.  When our night nurse came on, we showed it to her, and she got the docs.  Finally, after my turn as pushy mom (I told them that if she had a grand mal seizure because the day nurse didn’t take my concerns seriously there would need to be some answers – don’t mess with a mama on no sleep), neurology was called to rule out seizures. They came in and did a video EEG setup so they could watch her actually do the twitches while they watched her brain activity simultaneously.  The setup of this was much more than we thought.  It took about an hour to glue 26 probes that were set with a compressed air gun.  Seriously.  She was so strong during it – we don’t know how she did it. 

Sunday night was a stressful wait-and-see to find out if she was having seizures or any abnormal brain activity and to see if her IV would last.  At 3 in the morning, we found out that they were NOT seizures but that her IV did stop working.  They decided to give a foot IV one more shot before doing the central line.  There were not high hopes for this considering no one has been able to even draw blood from anywhere but her femoral vein.  But the Sunday middle-of-the-night IV nurse did it.  She was taken aback when sleep deprived crazy mom hugged her, but she accepted it happily. 

This morning when Grace woke up, she was looking better.  She was less puffy and had become pinker.  Her eyes are clearer and she seemed so much more comfortable.  Her tic was virtually gone. 

During rounds, they decided that the tic was likely from morphine withdrawal, since she had basically been overmedicated with it the day and a half prior.  So in addition to recovering from open heart surgery, and new fluid in her lungs, she had to deal with withdrawal. We also learned that the reason for the fluid buildup in her lung is that the mitral valve, the valve between the top and bottom of the left side of the heart, is leaking significantly (we were told it was mild-moderate Saturday) and will likely require further surgery.  They can't know for certain when this will be, if it will be.  They are telling us it is unlikely that it will fix itself, and the amount of leakage is unlikely to sustain on medicine alone.  While this is a common second surgery for kids with AV canal, if it does end up happening the normal timing for when this happens is usually teenage years.  Grace’s anatomy is such that they think it could be earlier than that, and it’s possible that she’ll need to have a second operation within this next year.  That’s right, they said it’s possible we could be back here in a few months. 

This is a lot of information to handle in a short period of time.  We’d like to believe we are stronger souls than we were on Friday, but we’re not sure we’re the ones leading by example.  Our little Gracer is a champ, and while there are a lot of scary future unknowns, we are trying to focus on what is happening right now.  And what is happening right now is good.  She's eating better, her color and swelling are better and she seems more herself complete with morning chats with Big Bird and even the Graceland Smile.  


I will post pictures that go along with this post separately so that I can get this news out to you.  Thanks again for the continued love bombing, prayers and support.  At one point last night, I literally felt a weight lift a little off my shoulders and I know that was all of you sharing the burden with me and Darren.  Thank you,