On Her Way Back

It's official - I think I can finally say we are getting our Quinnie back! The last 24 hours have been a major turn around period for her. Our hearts are full of joy at seeing how well she is doing. It's actually sort of remarkable. Now I know that the last surgery went bad almost from the beginning. They just couldn't tell via echo that the patch was leaking - but my guess is that the pressures were already changing in her heart and affecting her recovery. The last time we were post-surgery and even on day of discharge, the child had not smiled once. We just blamed it on the pain meds, her being a little slower at recovery, the fact that she was ready to be at home, or a bazillion other things. Now we know the child was already starting the downhill trend that would continue for the next three and a half weeks.

Yesterday (Wednesday), she gave us her first smile, genuine smile, and began being more playful. On Tuesday, she just looked sad, sad, sad - but I can definitely blame that from coming off the sedation meds. But by Wednesday she was already starting to look bright-eyed and beautiful. This was from first thing in the morning when Matt walked into the room:

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.

We call the IV on her hand her "paddle" - they have to tape it all up and put this splint thing behind it so she doesn't pull it out. Trust me that it didn't slow her down at lunch even though she prefers to use her right hand for everything. This makes Daddy a little sad because he was hoping to have another fellow lefty in the family. Sorry, babe. She's gonna be a "righty".
Wednesday was a big day in a couple of ways -- her xrays from that morning showed little improvement of getting the large pleural effusion on her right side to drain. The left side looked just fine, but for some reason the chest tube was just not capturing the right effusion. (by the way, the word "effusion" is going down as one of the words I absolute HATE to say, write, or hear. It joins the words "moist", "tee-tee", toddler, kiddo, and panties)

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.

She spent the rest of the morning playing with me, reading books, sticking out her tongue, babbling, playing peek-a-boo with my hat, reaching her hands out to everyone who came in the room, and smiling. I had to turn away a couple of times so she wouldn't see my happy tears.

We also received the good news that the tube worked just as it should and her xray remained clear. So they made the call to go ahead and remove both of the tubes at 12:30 today and send her on down to 15th floor to finish her recovery. Praise God! I was a little nervous about having the tube removed, but after 2 reassurances from both Dr. Fraser and the attending on 18, they assured me they had gotten it all and it would actually be more dangerous for her to leave it in.

So tubes came out at 12:30 and Quinn finally got a room on 15 around 5pm today. I have to say, I am really pretty sad to leave 18 - the staff up there is AMAZING. I cannot say enough about how much I love them, for their compassionate care, wonderful ability to explain things in terms I understand, how evident it is that they love their jobs, and their teamwork. Everyone is on the same page up there and on the same team. It's sort of incredible, given that it could be a very sad place, but it truly is a happy place to be. However, 15 is the only way out of the hospital so here we go :) I was totally dreading it but I have to say I think this time around will be much easier. This time I have a child on the mend, one that wants to play and one that is seemingly not in much pain at all. Last time(s) we were there, she was so sick and miserable that it was a very difficult place to be. You are pretty much on your own and when you have a child in pain and no one can tell you why, it's incredibly frustrating. This time will be different. I just know it. I'm not saying the next few days will be easy but prayerfully we are on the right trajectory now.

We will definitely be there through the weekend - the doctors are not going to take any chances especially with her history of the effusions (I just vomited a little in my mouth writing that darn word again). So if she continues to eat well, start drinking more, and showing all positive signs, then we will probably head home early next week. We are willing to be there for however long it takes. I am not eager to see the inside of the TCH ER anytime soon. Twice is about two times too many for anyone.

(Oh, and to answer a question that some of y'all might have --- I was really worried why she kept forming these effusions. My biggest fear is that this surgery will go bad as well. However, it was explained to me this morning. Basically, since most likely the patch started leaking from almost day 1 (although undetectable on the echos), it started irritating the heart and helping the effusions to continue to come around. Then we would balance it was the diuretics, get most of it to go away, but again the patch problems & pressure issues remained. So it would just return. This time, it's just a matter of the normal effusions that 90% of heart surgeries produce and a function of going on bypass and cutting into the heart. And because Quinn's body likes to do things the hard way, she happened to form an effusion in just a very difficult place for the chest tubes to drain. It was almost sitting in a perfect pocket that was unreachable by the tubes placed during surgery. So they assured us, while she will likely go home on diuretics as a precaution (and 85% of their kids do), as long as the repair holds up, we should not have a fear of the effusions returning to the extent that she was experiencing them. It may take awhile for her lungs to completely clear, but that's going to be more of a function of time and her moving around, being more active, coughing, etc. I don't know if any of that made sense at all, but I did my best in my non-medical, non-technical, "I hate science" background).

So anyway, Matt is up with Quinn now on 15. I pray they both have a smooth night and a nice transition. For now I am hanging with my little man and watching him do this:

Peaches and crackers, yummy!

He has gotten tons of attention the past few days thanks to Gigi being here. So yesterday after she left, he was  little stir crazy so Matt summoned up the energy to take him to Little Gym to burn off a little steam. I swear he has grown into a little boy during these last few weeks. He's become so much stronger, much steadier on his feet, talking all the time, and so "boy", if that makes any sense. No more baby. All boy.

Anyway, we will flip flop again tomorrow and "Ma" (Matt's mother) is coming in town tomorrow morning to stay with Ryan. We are so blessed to have incredibly strong and caring grandmothers during this difficult time. They have both been incredibly generous with their time and have taken such good care of our little boy. Maybe too good of care. He doesn't seem to like Mommy's rules anymore :) ha.

And I leave you with a picture of Quinn on 15. Wearing clothes instead of a gown for the first time in 5 days. You can tell that Matt got her dressed because she is lacking a bow. In all fairness though, I don't think I packed a bow to match that top :)

I promise she's happy - she just hasn't really gotten a good nap today so she's pretty zonked!

Love to you all & thank you for your continued prayers. We have so much to be thankful for tonight.

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1 comment:

Kathryn said...

So happy for your progress! As a Grammy who loves to take extra good care (ie...spoiled) of her grands, I totally support your parents and in-laws. Quinn and her parents and docs are in my prayers! Grammy Kathryn