I've waited a LONG time to be able to say that! Tomorrow is the day! Now, I should say, this is barring any significant issues between now and then, but we are believing that there will be NONE!
Today has been a WHIRLWIND! Trying to pack up our room, finalizing our CPR instructions, Med instructions, getting a BILLION prescriptions filled, getting Oxygen delivered (more will come to our house next week... so NO LIGHTING FIRES around house, kay?!? *grin*), getting our feed pump and supplies delivered, and getting trained on USING all this stuff!
Going home for Annabelle is NOT an easy task. But it is well worth it, let me tell you! I ordered my lunch about 2 hours ago... and have yet to eat it, to tell you how crazy it's been!
Cardiologist had a long discussion in the weekly "heart meeting" with ALL the cardiologists and the heart surgeon.
This is where some not so great and a little scary news comes in. So, we are coming home now because a.) we are a stable family and since we've been so involved in her care, they trust us, and b.) we only live 40 minutes away vs. hours away like many families. Otherwise, we'd be staying.
What the surgeon WANTED to do was try to wait until Spring, hoping that she would grow bigger, and the pressures would decrease. But her heart is having serious issues functioning well with such a large leak. Her liver is distended, which is a very bad sign, and not to mention we are still having occasional fevers and bloody stool.
Still, they feel comfortable enough for us to go home for a while. It might only be a week. It might be a month. But at the moment, the feeling is that soon she will have to come back in and have yet ANOTHER heart surgery to fix her leaky valve sometime in January. And this still, probably, will NOT be her Glenn. That depends greatly upon the pressures in her heart.
They would do the leaky valve fix now... but the surgeon wants her to grow a little bit, as her heart tissue is VERY delicate, and as she grows, it toughens it up, making it better tissue to stitch up I guess.
I know this is all complicated... and probably too much information... but long story short, we are going home, but we have NO idea for how long. And now we have 2 heart surgeries to prepare for in the next few months, vs. one. *sigh* That is overwhelming to think about, but I'm not going there right now.
I'm just thanking God for our CHRISTMAS MIRACLE!!!
PLEASE pray that we have a very UNEVENTFUL weekend! I gotta tell you, they trained Scott and I on CPR, and it scared the crap out of me. Mostly because I know there's a decent chance we might have to use it on her someday, and knowing she's had chest compressions at least 4 times in the past to save her life. It made me really stop and grasp the reality of it all.
GOD IS AWESOME THOUGH, and has brought us through thus far. We are believing in GOOD things for our Annabelle, and look forward to a happy, family-filled Christmas, celebrating the birth of our WONDERFUL Savior!
I can not WAIT to post our coming home pictures for you guys!! Not sure if I'll have time tomorrow with everything... but I WILL sometime this weekend!
--krista.... skipping away to actually EAT my lunch while doing the snoopy happy dance!