Oh, how I loved seeing those bright eyes. Compare with Tuesday:
Pretty girl but definitely a little sad and confused.
Anyway, Wednesday was a big day - she was all about her food and drinking her milk. And did it all from the comfort of her bed :) I started crying (what a shocker) when she grabbed the fork from my hands to begin stabbing the chicken herself. That's my independent, fiesty girl! She also ate about 18 Yo Baby yogurts - hey, whatever works. Thank goodness we keep a large stock at home!
|Big girl eating with her fork - and she didn't even mind that it was hospital-issued plastic. Or that the chicken was cold. And nasty. She liked it anyway. Bless her heart because I couldn't even eat it.|
I digress. So, when I walked in for my "shift" yesterday, they had her laying almost upside down in the bed, trying different positions to see if they could get some drainage. This was after they almost did little flips and back bends with her in the chair and having her lay on her tummy. No drainage. So by 1pm they had to make the call to go ahead and drain it with a test tube. It was just in a difficult position and sort of stuck so it was our only option. We could have tried to wait a bit longer, but the diuretics weren't really making a dent in it, and it was likely that time wasn't going to change that. And Quinn would not be able to move onto the next stages of her recovery if we didn't get rid of it. So yesterday afternoon I signed yet another consent form for them to thread a needle (followed by a thin tube) through her ribs and into the space between her chest and her lungs to capture the fluid. I will say that it was finally nice to sign a consent where one of the risks was not death. Only bleeding and infection. Funny that didn't bother me - but in relation to the number of forms I have literally signed away her life, I was happy to sign it.
So they gave her some "happy meds" similar to what she had before her surgeries - only these made her super goofy. She immediately looked at me with these googly eyes and started babbling away. Loudly. And constant. She became dead weight and we lifted her into the bed and she looked straight at me with these huge eyes and exclaimed "Dada!" That got a good laugh out of everyone. As they kicked me out of the room to go wait out the 20 minute procedure, I heard her laughing away down the hall. Good for my heart to hear that, even if it was drug-induced.
The procedure went perfectly and they drained 70cc immediately. In the hours that followed, they ended up getting out almost a liter total. That's A LOT of fluid, y'all, especially in a tiny little girl. She recovered nicely from the procedure and ate a bit of dinner and 2 yogurts and seemed to be down for the count by the time I left.
|Post-procedure. I'm feeling better, Mommy! She looks a little irritated with my constant picture taking but whatever.|
I returned super early this morning to make sure I caught the surgeon's rounds (they typically come around between 6am - 7am). As soon as I walked in, she opened those big ole eyes and gave me a big smile. Sweet girl. She has been sitting up perfectly as well the past couple of days --- another thing that she really had no desire or energy to do the last go around.
|I know she's not smiling exactly in this picture but trust me that she was. She just wouldn't let me get a picture of it.|
|Peaches and crackers, yummy!|
|I promise she's happy - she just hasn't really gotten a good nap today so she's pretty zonked!|
Well, it kind of feels like Groundhog's Day sitting up here in the Ronald McDonald lounge area and anxiously waiting for the buzzer to go off indicating an update. A little eery. Except it's definitely more quiet today than last time - we are the only surgery happening on the cardiac floor given that it's a Saturday so it's pretty much just us, the coffee maker, and ESPN Game Day.
Onto the update: they took Quinn this morning at 8am to get her under anesthesia. She slept great last night (thanks to some Lortab) and was not too irritable this morning thankfully. She was all about daddy and cuddling while we waited for the team to come to 15. Dr. Fraser came in to speak with us again and offered some reassuring pats on the back. I asked him if he had a good night's sleep and he assured me he did :)
It was a little different on the hand-off today than the last time. The first surgery they took us up to a holding room on the 18th floor until the team came to take her away once administering the "happy drugs". This time, that holding area was closed (again given that it's a Saturday) so we literally traveled up with Quinn to the 18th floor and stood right in front of the elevators and the dreaded double metal doors leading to the operating room. Then they gave her the drunk drugs, waited until she was nice and happy, and then took her away. I'm not going to talk about how I felt about my little girl being taken from me again, but you can imagine.
We just received our first update and Quinn went under fine. She is 100% stable and stats are good. They have placed all the chest tubes and ivs in preparation for opening and used their endoscopic echo to visualize and confirm the findings from the exterior echo yesterday. No surprises so far but they won't truly be able to see everything until she goes on bypass and they can see how the patch is leaking.
They were just about to make the incision when the nurse came to speak with us so they should be in now. Once they get in, they will spend a considerable amount of time clearing away any scar tissue that started to form from the first surgery. Once that is clear, then they will begin to get in place the instruments to go on bypass. We expect we will be ready to go on bypass at around 11:00am. If you remember from last time, going on bypass is a critical juncture. Please be in prayer at around this time that she goes on as smoothly as last time.
And just a couple of notes that I left off from my last blog post as my mind was so rattled yesterday:
-Quinn's liver function tests came back a little high, but not unexpected for someone who has an enlarged or swollen liver. Nothing to be hugely concerned with - it simply is a symptom of what's happening in her heart. However, to give you an idea, not only is it swollen, but it's also been pushed down by the pressures in her body almost 5cm (about 2 inches) below where it should be. That is a HUGE amount for a little girl. This explains a lot of her being uncomfortable.
- And one thing I purposefully left off until I could tell my family is that Quinn's right side of her heart was virtually going into heart failure. Scary. It doesn't mean that she would have coded over the weekend or anything but that's why she continued to trend downwards. Thank God we have an amazing surgeon willing to operate on a Saturday and get her back on the road to recovery. We are more and more at peace with knowing that while we hate that she has to endure another open heart surgery, we are desperate for her to feel better again - and this is the only way.
We love you all and will continue to keep you posted in the hours to come. I promise not to be as lengthy with the next updates :)
Believing in God's power to heal. Jeremiah 29:11.
In His Mighty Grip,
This morning I drove back to the hospital to relieve Matt - and got a very welcome surprise present... the news that we were being discharged today (Weds, I think :) ) Quinn's xray was about 90% normal so they decided that it was time for her to go. They feel the rest of the effusion will clear up at home and her pain has definitely decreased in just the past day. I was a little (ok, a lot) nervous to bring her home again, given the pain I saw her in Sunday. I would spend 40 days and nights in the hospital for her to not hurt like that again. However, they assured me she was ready --- that it was actually going to be more dangerous with her weaker immune system to just hang out in the hospital getting "back to the business of Quinnie". We didn't want to risk any secondary hospital infections just by the sheer number of people caring for her.
So we are safe and sound at home --- she did so well coming home and barely moaned. And once we got home and she saw her Gigi, she was all about it : ) She even found time to be a little playful. We took the kids out in their little Tykes cars for a spin around the block & she look refreshed and pleasant to get the fresh air! We haven't seen many smiles yet and certainly not any giggles but we are trying to be patient. It seems almost every hour we see an "old" part of Q emerge. Tonight she sat her in highchair and casually pitched her sippy cup off the tray just because. And I cried. Why? Because that's what the "old" Quinn did -- the newest, hurting Quinn didn't have the energy to toss sippy cups. So for once, it didn't even bother me - it just made me happy. How weird is that??!! Treasure the little things as much as they may annoy you :)
We are still, no doubt, in for a long road. Recovery for Quinn is not in days, but in weeks. But prayerfully each day should be better than the last. We will pray for no more hiccups and no more pleural effusions. Once was enough, thank you very much! And now this very, very tired momma & daddy are off to bed. Love you all, thank you for your prayers. Blessed beyond measure,