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,