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,
Y'all. Seriously. What day is it?
I believe it's Tuesday. Don't ask me to tell you the day of the month. You could say we are in a bit of a fog right now to put it mildly. So I will attempt to be as coherent as possible on this update. Then we'll all say a collective prayer that my son is in a mood to take a LONG nap this afternoon so I can shut my eyes in my own bed for a minute.
First, thank you ALL so much for your wonderful message, texts, emails, and facebook posts. Overwhelmed with the love for our little girl. I mean, we think she's a pretty special one but it's oh so lovely to know that we have so many people who have taken the time to pray for us.
Second - here is the latest.... I can't recall where I left off on Sunday but I believe it was that we were being checked into the 15th floor (back where we did post-op recovery once we were out of the CVICU). Kind of like going home - except to a home that you don't want to visit ever again :) It was nice to see some friendly faces that remembered us though.
Anyway, yesterday (we'll call it Monday), the doctors took a "watchful waiting" approach to her care instead of going in immediately to drain the pleural effusion. Unfortunately, they didn't do an awesome job of actually letting us know they were in a watchful waiting pattern, so there was a poor resident that was the recipient of a little mommy wrath and irritation of the non-communication late yesterday afternoon.
You may want to pray for her. I feel a little bad about my tone with her but bottom line, I am there for my daughter and not to make besties - I feel like I could have been a little sweeter though. Maybe pray for some patience for me, too.
Monday morning she was taken for another echo to check out her heart function and another chest xray. Fortunately, it seemed the effusion was less involved than on the previous day. So they decided to continue with the IV Lasix (diuretic - now given 3 times daily at a higher dose we were doing at home). The hope was the meds would continue to dry up that effusion. She also remained on the Motrin every 6 hours and didn't require any additional morphine save for the single dose given in the ER on Sunday.
Yet I was with her all day yesterday and last night, and the child just moaned and moaned almost 100% of the time if she wasn't sleeping. And she wouldn't really sleep in her crib - only on me. So we had some good snuggle time and watched Serendipity on Lifetime. She didn't eat breakfast or lunch, except for a few crackers. She was actually interested in drinking milk and water so that's good. Anyway, after speaking (talking firmly) with the resident, I finally got to talk with the attending who ended up prescribing her some Tylenol with Codeine again. We gave that to her about 7:30pm and she started to perk up and stop moaning. What a welcome relief.
By the time I sat down to eat my dinner, she was totally fine with sitting in my lap and pulling out BBQ baked lays and stuffing them down. Who knew the child like BBQ baked lays??? I tried to sub them out for a healthier cracker but she pitched that on the floor. Whatever. At this point if the child wanted to eat a gallon of Blue Bell, I would let her. Anyway, the chips gave us a fun distraction for about 30 minutes as she would continue reaching in the bag and passing them to me after she was done. I even heard some babbling. All good stuff.
We tried to hit the hay around 10pm, but pretty sure she didn't fall asleep until 11:00pm, only to be reawakened at both midnight, 1am & 4am for meds & vitals. Uggh. I surrendered sleep at about 5am and walked to McDonalds for a break after she went back to sleep.
So after an early morning xray, this is where we stand: the effusion is looking about 75% better than it did Sunday and marketedly better than yesterday. Her echo came back completely normal so there is no worries that the repair isn't holding up or that she has some sort of infection around her heart. Praise God for that. Her labs are normal, so there is no signs of infection at all.
So this is where things get a little confusing. If we had an infection, we could treat that easily with antibiotics. And while the doctors don't doubt that the fluid in her lungs was putting heavy pressure on her diaphragm and causing pain - they still don't think that's the only cause. (In fact, I found out later that the fellow who met us in the ER on Sunday told our attending that he had not seen a baby in that much pain in a long, long time. Awesome - we love to be memorable)
So this is what they think may be another cause - she has been on the Motrin for a LONG time for a baby, almost since 2 days post op. That's a lot of irritation on the stomach, especially if the child isn't eating great. So if the effusion made it painful to eat, then giving her the motrin was just exacerbating the issue. Basically, they think there is a good chance she has a good-sized stomach ulcer, or at the very least, a raging case of gastritis. The rest of her symptoms and behavior match with that.
Unfortunately, the only way to see if she has an ulcer is to go in endoscopically - not something the doctors want to do at this point because it won't change the way we are treating her. Sooo, long story short - we pitched the Motrin this morning & she is now on Zantac to help counteract the irritation. Yet, it still will take a couple of days to tell if that is working and actually helping the problem. The hope is that between continuing to dry up the fluid with the IV (vs going in with a chest tube - which now there isn't even enough fluid to make it worth while - praise Him for that), release that pressure, ease the stomach discomfort, and provide pain relief through the Tylenol 3, then we should be on the right track.
Tomorrow a.m. they will do another xray and check out the fluid in the lungs. Then we will examine her pain levels again, discomfort, feeding, etc and go from there. At the minimum, I think we are looking at 2 more days in the hospital IF this plan works and is the cause of her pain. If it hasn't helped, then we start looking at other causes. As someone who likes to plan ahead and research, I asked them what those may be and they wouldn't even go there. Probably better than me sitting her googling everything during Ryan's nap.
Interestingly enough, our cardiologist (who was out of town from Friday to today - perfect timing), was shocked that the resident who discharged us last Monday sent us home with 7 days of Motrin instruction and no Zantac. It sounded like (without throwing that resident under the bus) that it's almost protocol to prescribe Zantac to a child when taking Motrin for that long. Hmmmmm. We'll address that later but if that turns out to be a part of this equation & something as simple as an antacid could have helped her discomfort, then I will be LIVID. Right now, I can't focus on anger or blame because that doesn't help Quinn. I just want her to feel better and get back to the business of being Quinnie. And the pleural effusion would have happened anyway (it just sometimes occurs after these long heart surgeries - not totally rare)
So anyways, confused? Yeah, me too. So we know some things but it's still somewhat of a mystery. However, what is not a mystery: we are 100% focused on getting Quinn better and we pray every day to see just a little more of a glimpse of our spunky gal. Matt and I are back to passing each other in the morning as we take our 24 hour shifts at the hospital with a crossover for about an hour as we debrief each other on the respective children and their nights. That way one of us is always home with Ryan (who still obviously needs us as well) and that person is getting at least one good night sleep.
We have faith that this will prayerfully be a short-lived setback. We pray that they will find the answers soon or confirm what they suspect already. It's quite a tenuous balance in caring for this age child - they can't tell you where they hurt so a lot of it seems like "we'll try a bit of this, a bit of that". I told the attending yesterday that I don't envy her job one bit - you have to have such a special gift to determine what's wrong with a non-speaking child. No thank you.
So that's where we are - hmmm wonder if it even makes sense. Anyway, Matt is "on duty" now and I'll switch out with him tomorrow. And we'll just keep doing it until Quinnie can come home. As I was feeling a little sorry for our family the other day, I remembered all of the things we need to be grateful for --- we both have bosses who understand that our child comes first right now. They have been amazingly compassionate. We have so many friends that continue to support us & a church family who is still providing us much appreciated meals every other day. And I have a wonderful husband who is the most amazing father in the world. I am ultimately grateful that he gives me time to rest and has no qualms about taking his turn at the hospital. In a perfect world, we would all be up there together but it just doesn't make sense right now.
Ok, enough of the ramble jamble. Hopefully my next update will be a good one & maybe one with a potential for a discharge date.
Love you all,