Tick, Tock, Tick, Tock...

Update: Since this last post, surgery date has changed. Catheter procedure will remain on Monday, September 19th. However, the actual open heart surgery was moved to Tuesday, September 27th. We will check into TCH on Monday morning, September 26th to complete all pre-op work ups. Please continue to pray for God's timing & His hands to be on the doctors, nurses, and staff at TCH. To God be the Glory. Geaux Team Quinn - we would be tickled if you would remember her on these dates by wearing green (our team color) or if you have a TQ shirt, throw it on :)

There goes the clock. Countdown to stage 1 of Q's heart repair. We are now officially one month out. September 19th we will check in for her catheter procedure and then surgery is still scheduled for September 21st. Just to recap for those who don't know: Quinn has a congenital heart defect called "Double Outlet Right Ventricle with Pulmonary Stenosis and Ventricular Septal Defect". She also has sub-arteries/veins that have formed due to the lack of oxygen pumping through her body. To be honest, when I see people I haven't seen for awhile, they ask how Q's surgery went. That's because this surgery  was supposed to happen MONTHS ago. But little girl has rallied and her sats have stayed constant (in the 80-82% range) so there was no huge rush to surgery until she got a bit bigger a little bit of weight on her.

But now we are getting to "go time". We are coming up to cold & flu season and the doctors would like to see it completed before then. And if she continues at these levels, eventually they will drop and she will go into heart failure. No bueno.

So I've had a few people ask specifically what's going on, so that's why I am writing this post.

This is what I know as of today:

We will check in on Sept. 19th for the cath procedure. She will have a catheter with a tiny camera attached inserted into her groin. She will obviously be under general anesthia (ughh why can't I ever spell that word - I need to go back and spell check that one) -- the procedure is scheduled to last 3-4 hours depending upon what they see. The idea is to give them the best idea possible of what they will encounter on surgery day. They have a general idea, given the multiple echocardiograms she has endured, but this will give them better pictures. She will be in recovery for at least 6 hours after & once they make sure she is eating, playing, peeing, all that good stuff :) - she will be released.

This is a change from what we originally thought and been told. The idea of having the cath and followed by the surgery 2 days later was that we would only admit to TCH once. Now we will go through the process twice. Likely, we will check out late on Monday evening, come home for the night, play Tuesday, and then check back in Tuesday night. They like for the cardiac surgery patients to be on their floor prior to surgery, especially if it is an early morning surgery. I was thrown off a little by this change of plans (remember, A-type!), but thinking about it, I think it will work well. It will be nice to come home, emotionally and physically regroup, even if it's just for 24 hours, before we check in for a what could be a potential stay of 2 weeks, give or take.

So that being said, we will be admitted AGAIN sometime Tuesday the 20th or early Weds the 21st for the actual surgery. For those who wanted to know more details, yes, it's completely an open heart procedure. It's estimated to be an 8-12 hour surgery, depending upon what complications, if any pop up. We will get updates every hour or two, which I will post here and on FB for friends and family who are following along. At some point during the surgery, they will have to actually stop her heart to rewire the main pulmonary artery and the right ventricle.  She will require at least one, if not multiple blood tranfusions. Thankfully, Matt will be able to donate directly for her, but it's still up in the air whether I will be able to or not (that's a long story).

After the operation, it's really just a shot in the dark -- we know we will go to the CVICU for probably 2-3 days until they can remove her breathing tube. Then she will be moved to a more regular hospital room (that they call "room-in" for the parents to stay) for anywhere from 7-14 days - shorter or longer depending upon how quickly she regains her strength, starts eating, moving, etc. 

And then we will come home. We will lay low for at least 4 weeks after surgery to avoid any unnecessary germs and protect her immune system - and then prayerfully we will be back to our old tricks. There will be restrictions in how we lift her (not from under the arms, but almost a scoop position) because of the scar. And her play will be restricted - ummm k.

Honestly, I don't know how they will keep this little one down. I see her sprinting (literally, sprinting!) around this house, and I'm not sure that any sedation is strong enough for her. I warned the cath lady today that she is a tough bird, and that they typically have to double or even triple-dose her for just her echos. So I can only imagine how much medicine they will have to give her for the surgery and to keep her calm afterwards. But that's my fiesty girl. She doesn't want to stay down for long - so I know this won't keep her down.

So that's the basic plan of what's going on --- I wasn't planning on writing this until a little closer but I have had a lot of questions lately so I just thought I would give you an update. It was supposed to be brief, but if you've read this blog for any amount of time, I am rarely that.

On a personal level, we are doing ok over here. We are just trying to soak up both of the kids as much as possible. We definitely won't see Ryan as much during Q's surgery & recovery time, and our time as a family of four will be put on hold (for just a little while). And of course, we are loving on Quinn as usual. But I can't say that we are doing things too differently with them. We are just trying to prepare our hearts and minds. Thankfully (and thank you, God!), we don't have to explain this procedure to Quinn. That is one conversation that I am not ready to have.

So it's just on us - which is fine. We are parents, that is our job. To take the burden. BUT, we need to learn to pass that burden onto God and just give to Him. This is obviously where I struggle. I cling to it, I want control of it, and I want to take care of it. I don't know why I have such a difficult time entrusting that He knows best. I know (in my mind) that I have done everything possible to arrange the best possible care for Quinn & Ryan. We have lined up the best doctors possible, the best hospital, and we have the best babysitters of grandmas and aunts coming into town during that time.

So I KNOW I need to just give the rest of it to Him. Yet, I still find myself waking up in the middle of the night lately, yelling Quinn's name (seriously, that was TWICE this week) or waking up at 4am and unable to go back to bed. My subsconscious is trying to deal with all of this - because outwardly, really I feel ok about it. Going about our day, I rarely think of it because she's just such a hot mess (and I say that in the fondest of terms!). You would NEVER know that her heart was so different.  Yet, inward, in the dark of the night - that's where I have the hardest time.

So I suppose I am asking for this - it's hard for me to ask for prayers - but if you do pray, I pray for a few specific things:

1. Continued smooth preparation for Q's surgery - that the surgeon team of doctors and nurses would be preparing for her case and be ready for this little fireball!

2. For logistics - that the surgery occurs when it should. There is a chance we could be bumped if there is a more pressing case. Pray for God's timing in this.

3. For Matt and I's hearts and mind - may they be at peace. Be excited about the odds of our daughter surviving this surgery & recovery, and coming to peace that nothing is 100% guaranteed.  Let Him be enough for us and know that both of our children are just "on loan" to us no matter what-- that we may raise them in a way that would please Him.

4. I am sure there are other ways to begin praying -- pray as you feel led. Wear green if you like on September 21st for Team Quinn (our team color). I'd love it if you would circle it in your planner or mark it in your iphone or whatever (I am not fancy, so I would be a planner girl).

We love you all. Just wanted to keep you posted.

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Robbie said...

I'll be sure to wear Team Quinn Green on the appropriate days. Please let me know if there's anything we can bring you when you're in-house. You know we've spent most of the past 10 months down there so if there's anything I can help you with or any questions I can answer, please feel free to bend my ear.

Also, I'm not sure if it would be helpful or scary, but I did photo inventories of the gear that Linus came out of surgery with each time. I, personally, like to know what to expect, so I can prepare. As for the cath, is there a reason they're going through the groin instead of the neck? Linus had major complications when they went through his groin so they did the next 2 through his neck. They were much faster procedures and he had zero issues. Just something to think about or possibly ask for clarification on.

Anywho, good luck and we're thinking of you. :)

Lisa Johnson said...

You are ALL going to do great. You will be in great hands and most importantly, the Lord will be holding you close...giving you more courage then you ever dreamed possible. Feel free to go back and read our posts from January 2011 to prepare yourself for what you might see/feel/hear etc. It will be hard to see your sweet girl after surgery, but day by day more tubes will be removed and she will be back to your sweet little girl with a ton of energy! :) I feel certain that Ryan will be in the best hands during this time and I know he will miss you guys, but it won't be too long before your fam is all back together again. We love you guys!!

The Brewers said...

lifting you guys up!!! would it be okay with you if I mentioned it on my blog so our prayer warriors could pray as well??

HeartBabyHome said...

hey - just saw your comment on Shannon's blog (from the Every Heart has a Story..)
I hope everything goes well for Quinn's upcoming cath and surgery.
I was going to ask if you wanted me to draw a heart image for you - DORV w/ PS and VSD...but then I noticed I've already draw it - was that for you or someone else?....
anyway, here's the link and you're welcome to use it if you want: http://www.heartbabyhome.com/2011/05/double-outlet-right-ventricle-dorv-with-pulmonary-stenosis-and-vsd/
My Seraph had a heart cath last month. It was so much easier when she was too tiny to know what to expect. Sometimes its hard to be the adult.

CathyBB said...

Hi! I came here from Kelly's Korner and just wanted to give you a virtual pat on the back. I had open heart surgery when I was a small child, so heart babies always catch my attention. =)

I will pray that your child's surgery will go beautifully and that she'll have a full recovery. My parents saw an immediate and profound change after my surgery, and I was able to be a normal child, a teen athlete, and I am now a mom of three. I also - 30 years later - still proudly carry the scar on my chest as a reminder of how blessed I was, not only to have great doctors and a wonderful outcome, but loving parents to see me through it. While I'm sorry they had to go through the worry, I appreciate their care so much! I'm sure your daughter will, too. God bless you.

Becca said...

I will be praying for you and your sweet little one! I know just what you're going through and it's a privilege to pray with you!

Beth.. One Blessed Nana said...

From one Louisiana girl to another, I am praying for little Quinn! We serve an awesome and amazing God and I am lifting this precious one up to Him even now!