Catheter Novel, Part 2 : )

So I was reading through the post I wrote when we got home late on Monday night. Wow. If any of y'all made sense of that, then bless you.

Anyway, I said I would discuss a few more details, so for those who may be interested, here's a little
 more - and some pictures.

First of all, if you are a friend on facebook, you saw that our wall was coated with people taking pictures in their green supporting our little girl. I was absolutely taken aback as we were sitting in the waiting area and these pictures kept coming across my screen. Tears filled my eyes on numerous occasions as each one popped up.

And the amazing part? Most of these people didn't even know Quinn or our family. They just had heard about her story and wore green for a little girl they've never met, never heard of until recently. That's absolutely amazing to me. Thank you to all of you who spread the word about wearing green for Quinn. We will print those pictures out and keep them in our "keepsake" box that my wonderful friend Ashley got for Quinn to track her special journey.

Anyway, some of you may not know why we wear green, so here's a post describing it. This was wayyyy back when we thought we were looking at a spring surgery but the color still represents new life, renewal, healing --- plus, if you haven't noticed, our last name sounds pretty Irish, so why not green? Plus it's a pretty lucky color :)

I also promised a couple of more details on the catheter procedure & why it was so important to get that coil in place. We didn't even understand it ourselves until it was all over. When Q had her last echo, they picked up that she perhaps had a collateral vessel that had formed. This collateral vessel served no function to help her heart, but it was the body's way of trying to pump more oxgenated blood into her system. From what I could see on the pictures, it was basically pumping blood into the chambers of her heart, clouding some of the other structures. So by "coiling" it off (literally popping in a coil that looks like a little spring in a mechanical pencil), they stop that blood flow and effectively block it off. For life. So now, little one has her first new piece of hardware. Apparently, it will grow with her and should never have to be replaced. It was amazing to see the  before and after pictures of it just doing it's job.

My biggest question of the day was why they wanted to take care of that vessel on Monday and not just wait until the "big" surgery. Well, first of all, it was in an area of the heart that Dr. Fraser won't necessarily be concentrating on and would have required a more extensive surgery and scar had he had to take care of it too. Also, with the extra blood it was pumping in, it would have made the surgery more difficult. So that's why a 3-4 hour procedure turned out to be a couple hours longer than it should have been.

Anyway, so that's the coil. We are immensely grateful for the cath team who were so careful to take their time and incredibly diligent about getting that thing in place. I can't even imagine the steady hands and patience you must have to do a surgery like that. And like I mentioned in our previous post, our doctor was very honest with us about how she was minutes from quitting --- she was having such a hard time getting the cath to bend in just the right way to reach the vessel and it was in a hard to reach part of her heart. It would not have been the end of the world had she not gotten it in there, but it definitely saved us from some complications next week.

She was also able to share with us some more of the detailed findings from the pictures they were able to take. An echocardiogram is good but sometimes it just can't show all of these tiny structures. So these cath pictures are key to helping the surgeon and his team next week getting into the right place and making a game plan as to what they will go after first.

As we have previously noted, her pulmonary artery still measures on the small side. We were hoping it would have grown a bit more, but no such luck. However, the cath surgeon was quote "hopeful" that it was still large enough to be able to repair instead of replace. We definitely want to aim for REPAIR. Replacement of the PA means that she is guaranteed at least 3 more open hearts in her lifetime. While a repair doesn't guarantee that this is a one-shot, lifetime repair - it does lessen the chance that she will be on a surgery schedule until adulthood. So that was good news -- we'll take HOPEFUL for sure.

They also picked up that in addition to the large doubly-commited VSD that lies below the aorta and right ventricle, Quinn also has several (previously undetected) smaller VSDs located lower in the chamber of the heart. Not horrible news, just makes things a little more complicated. Dr. Fraser may decide to repair them or depending upon the size when they get in there, he may choose to leave them open and see if they close up later in life. It just depends - another one of those gametime decisions I love so much : )

A few people mentioned to me that they didn't realize that the cath was going to be so serious and intensive. Well, partially I may have down-played it a bit AND I also don't think we realized how lengthy it could or would be. I think anytime you put your child under general anesthesia for that long, it's pretty scary. Signing all sorts of consent forms that we understood the mutliple risks was pretty scary. Letting her go through those double doors with the team was extremely scary. And yet, when you compare it to the open-heart surgery coming next Tuesday, then it was less serious than that, and I guess that's where my focus was. I don't want to say that I was blind-sided but I definitely don't think I was 100% prepared. But I don't think you are ever 100% prepared for something like that. And yet, now that we are on the "other" side, I am actually grateful we've had this first step. We are more familiar with the layout of the surgical prep area & the waiting area. We know the things that will comfort Quinn (her shoes and headbands) and things that will not (surprisingly most of the toys and lovies we brought).

And without question, the hero of the day was Quinn. She was such a spunky, happy little girl all the way into the operating room. They told us she actually laughed until they put the mask on her. How that warmed our hearts to hear that. To know that she wasn't scared and just took it in stride. Oh, how I love her.

And then the nurses in recovery told us that babies this age either wake up really happy and totally fine OR they are just plain MAD.

Guesses to how Quinn woke up? Anyone? Anyone?

If you guessed royally pissed off (can I say that word? Well, I just did) - then you would be correct. Ha. Little girl could not be calmed. I don't think she was in too much pain, except that her throat probably hurt from the breathing tube. Combine that with some dizzying effects of the medicine and being attached to a zillion wires made for one very unhappy little girl. Broke my heart. And she just wanted her daddy. Thank God for Matt - he was such a calming force with her. We did everything we could to get her to relax and chill and hopefully get some food and water down her.

The only thing that finally worked?

Her shoes.

The child is obsessed with her shoes. As soon as we strapped them on or let her hold them, she grew happier by the minute. By late afternoon, she was eager to take down some cold chicken nuggets and mashed potatoes plus 2 nutri grain bars I had brought from home. Then finally the day caught up with her and I crawled in the crib and she fell asleep on me for a good hour (and I even caught a little nap as well).

Thankfully, her pulse in her left foot came back nice and strong (when she first was brought to recovery, they couldn't really feel it so they had to keep her on a Heparin drip to ensure she wouldn't throw a clot. Ummm scary, too). So once she had all of that to eat, all of her vitals were good, pulses were evident, we were released to go home by about 8pm. Thank God. I would have kept her overnight in a heartbeat if she needed it, but we were so grateful to get her home in her own bed for the evening. She again was an absolute angel the whole way home, promptly ate 2 containers of yogurt and was asleep 2 minutes after we put her in the crib. Oh, what a blessing.

Yesterday (Tuesday), she was still pretty funky in the morning --- very tired and clingy, understandably so. Her face was also very swollen (we are guessing from all the fluids pumped into her??) so she had a little bit of trouble chewing. Thankfully after two long naps, by 5pm yesterday she was back to her old self and had started to regain some of her face shape again. We were even able to take the twins out in their little cars for a spin around the block which they always love. And her brother was so happy to have her back. He obviously couldn't exactly tell me that, but I am just guessing  : )  The sitter we had on Monday told us that Ryan was very good but just "out of sorts". He didn't really want to play or do much else except sit in her lap and cuddle. He was totally missing his playmate and their own twin language. That was hard to hear as well  because it's going to be a weird couple of weeks post-surgery for him too. But for all of us, while it will be difficult, we WILL get through this - and prayerfully in another month or so, this was all start to seem like a bad dream with a wonderful outcome --- a healthy, happy daughter!

Anyway, as usual, probably more than you wanted to know - but wanted to keep you all posted. Thank you again so much for your prayers. We are completely humbled and overwhelmed by the outpouring of love.

Here are a few pics from the day:

Big girl ready for her surgery

She didn't want to sit still - she just wanted to go visit everyone!

Little one after surgery

Holding tight to her pink shoe

Finally calming down

Watching tv in her crib

Stuffing chicken nuggets down

Playing (this held her interest for a blessed 10 minutes)

Yes, we had a bow on her --- she loves accessories and playing with them. It was survival tactic :)

We are finally passed out!

Sun setting from our recovery room.

 God is Good,

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Libby said...

What a sweet, calm-as-a-cucumber girl she is! We're so happy to hear that things went well with the cath, and will be thinking about you next week! Those pictures are absolutely adorable.

Lisa Johnson said...

Thank you for the updates! Sounds like you are right on track for next week. I am SOOOO happy that all went well and that they were able to take care of that pesky vessel. Quinn is a fighter and she is going to do awesome next week. So are you and Matt! Love, hugs, and prayers!