Getting the ball rolling

It's been an interesting day to say the least...what was supposed to be a relatively quick 3 hours at TCH turned into a 6 or 7 hour extravaganza. I'll start from the beginning...

If you remember from last week, we were able to remove Q's oxygen. It was a HUGE step for us and quite the relief. We were still keeping her pulse ox monitor on at night and then just checking her pulse ox periodically during the day. From Thursday to Saturday she did fabulous. Stats were good and nothing abnormal. However, from Sunday on, her stats periodically began to drop. And on Monday night, I was up virtually all night hearing her monitor alarm me that her saturations were consistently falling below 80. They were not staying there for long, maybe 30 seconds or so, but pretty much happening every 15-20 minutes. Now, our cardiologist had warned us about this --- eventually she would start trending downward and doing what they call "resetting her baseline". We just thought we would be maybe a month or 2 more down the road before that happened.

So on Tuesday I called our cardiologist to let him know it looked like she "reset" from about 87-88 to around 82-85. We were scheduled to see him on the 13th but he decided to get us in this week if possible. Thankfully he was able to schedule an echo for us this morning (Weds) and then he would talk to us afterwards. Well, as soon as they started the echo just to check on her pulmonary stenosis (don't ask me to explain exactly what that is or what it means!), it was noted that it had definitely worsened from her previous echo performed at about 4 weeks of life. At that point, he decided to go ahead and do a full echocardiogram/full pre-surgical workup. Unfortuntately, that meant they had to sedate little Quinnie so they could get all the pictures they needed. My heart just broke at that - especially when she woke up and you could tell she was just all confused and out of it.

After the echo & recovery in the "tranquility room" (which was NOT the tranquil place for Q since she showed everyone just how loud she can howl), we moved back to the clinical side to meet with our cardiologist and his boss (fellow?). Basically it was decided to get Quinn on the surgery schedule in the next 2-4 weeks. While she is not quite as big as they had hoped, they still think they can do the entire repair in one surgery. She will be "presented" to the surgical team at their weekly meeting on Monday and then we will find out shortly thereafter the date of her consultation & surgery, including who her surgeon is (we have requested only about 200 times for one particular doctor - and God willing, if his schedule is open, that's who it will be).

So all of this is happening a little fast --- I really thought we had more time to fully prepare, but quite frankly, I'm not sure you can really be prepared for your child having open heart surgery. In a particularly comedic turn, for about an hour today, I thought we would be having her surgery tomorrow -- our surgeon had an opening and it was between Quinn and one other baby on who would get the spot. I just about had a heart attack when the cardiologist mentioned that to me and breathed a silent sigh of relief when the other baby got the spot. That was actually good news because it indicated that our surgeon felt confident that Q was not that urgent of a case, at least not to have surgery in 24 hours :)

And to answer a popular question, no, her oxygen will not be going back on. With Q's particular condition, too much oxygen in a failing heart could potentially flood her lungs and end up doing way more harm than good. I don't understand all the dynamics behind it because high school Biology was my first "C" so I won't try to explain it much more than that. Now that her heart is starting to show signs of distress, putting oxygen in her body will not help it at all. The oxygen was basically there anyway to prevent any apnic episodes and extremely low desaturations (like 50s and 60s), which Q has not had in the entire time she has been home and has prayerfully grown out of. As the heart condition worsens, she will spend more time in lower desaturations (mid to high 70s) and the oxygen isn't really going to help with that.

(An interesting side note: I have found that Cardiology and Pulmonology butt heads all the time when it comes to issues like this --- cardio always blames pulmonary issues and vice versa....always fun for the parent to try to figure out the happy median between the 2 and what actually makes sense.)

And I'm pretty sure I completely butchered most of this post and giving the most accurate information -- I really am not strong in all of this medical terminology & how things actually work. But that's why there are amazing doctors --- and Quinn has the Ultimate Healer on her side. Mommy & Daddy do not have to understand all of that stuff, we just have to place faith and our child's heart in God's trusting hands.

We thank you again for your prayers for our family. I am touched by how many have followed our blog and our family's journey. Prayer is an awesome thing!

Coming soon when Mommy recovers from the very long day ---- R&Q's 3 month post and stats!

post signature


Katie Cooper said...

Praying for all of you!

Katie Cooper said...

Praying for all of you!