So yesterday I wrote about our upcoming visit to TCH regarding Q's heart repair and mentioned that somehow a
curve ball always seems to come into play.
Well, I wasn't wrong --- today we were thrown one, but in a really good way if that make sense at all.
(And you'll have to forgive me if I sound somewhat delirious during this entire post. It was truly an exhausting day).
We started off the day super early since Q had to fast most of the morning --- I was trying to make sure she got in at least 2 bottles before the fasting time of 8am, but she truly wanted no part of my plan. Thankfully she took a good amount of oatmeal and bananas (which by the way, do not resemble in ANY WAY any banana I am familiar with), so she was somewhat satiated. I was also somewhat stressed out about the traffic situation getting down to the med center -- which on a good day takes us at least 30 minutes -- but given the pouring down rain, the continuing construction down at TCH and the congresswoman's arrival at Memorial Hermann, I knew it was going to be a little hairy. By some miracle, we made it down there record time, even allowing me a chance to score another diet coke before our appointment. Sweet.
As I mentioned previously, they needed to sedate Quinn for her echo which was quite the unpleasant and unwelcome experience last time. This time around I was a little more prepared but still not thrilled obviously at the prospect of knocking my daughter out - and Q was even less enthralled with the situation. Yet, she was a perfect angel during all of the prep stuff, even laughing and showing off her newfound skills of standing & bouncing. (And in an awesome twist of fate, our nurse's name was "Eugenie" -- that is Q's middle name, my middle name and my mother's first name and has been in the family for years, like over a hundred years. Although she pronounced it a little differently removing the french accent from it, I still thought it was pretty amazing. You would have to know how rare that name is to be as amazed as I was!) (And I just realized that I use an unreal amount of parentheses to share little "FF's" (fun facts) with you. My AP English teacher, Mrs. Presley, would not be impressed.)
Well, after Q was finished showing off her spunky little personality, she got hit with the "sleepy" medicine. Which doesn't taste good at all. Bitter apparently. Which she wouldn't swallow and would just spit it back in our faces or let it dribble down her chin. Maybe if my dietician saw that little display she would understand why my kid is so hard to feed! Nurse Eugenie just told me to wrap her up and cuddle and rock her with lullabies playing in the background. Quite frankly, it works wonders for my sleeping abilities but with fiesty child Quinn, she could care less. She is not a cuddler, rocker, etc. and never has been. I have never taken personal offense to it but today I really wished she would have just snuggled in for a slumber. Instead, she fell asleep for all of 10 minutes and as soon as we started to move to prep her, she opened her eyes WIDE and stared at us like "you idiots, I am not asleep yet.". So I tried rocking for another 15 minutes to no avail and then we had to hit her with the 2nd dose of the meds. Bless her heart. And I just realized the irony of typing that phrase.
Finally, she fell into a deep sleep (and could I just mention that I could watch her sleep that peacefully for hours??) She was so sweet and innocent looking and even let the paci drop because she was so relaxed. I just wanted to jump on the bed and hold her but obviously couldn't given all of the wires and probes and such. Oh yeah, and totally intefering with the echo. (The echo by the way is basically an ultrasound of her heart -- picture an ultrasound of your belly when you are preggers.. it's just like that, except it's just on the heart and focuses in on the blood flows, and specifically her pulmonary artery narrowing and VSD (hole in her heart))
Ok, so long story short - echo was finally completed, Q finally came to for a brief time to fight me over getting dressed again, then passed out on and off for the next 3 1/2 hours. Yes, we had to wait 3 more hours to see our doctor in a very crowded waiting room. TCH cardiac wing is an experience to say the least on Mondays. I tried to find a quiet little corner for us so I could at least chow down on the sandwich I brought with me and keep an eagle eye on Q to make sure she was still breathing after all that sedation medicine.
Of course, the waiting room filled up to capacity and I ended up next to a very loud mother with her even louder son, who kept threatning to give him away if he didn't behave. Or in the very least give away his pacifier. God no, don't give away his paci. Yet, you cannot truly get annoyed in a place like this --- all of these kiddos & families are dealing with very serious defects and/or diseases of the heart. If they want to run around like banchees, then I suppose they have earned that right. Although, I hope Q surely doesn't in a few years. We'll need to work on that.
FINALLY - what you have probably been waiting for through all of that nonsense... we finally met with our doctor, a good almost 2 hours late (not his fault, there was a transplant that pushed back everyone's schedules and all the rooms were blocked up). If you'll recall, the plan that was laid out in October-ish was that Q would like have surgery around 9 months of life and this was supposed to be her "pre-op" visit and be presented to the surgeon team this Friday. Well, surprise, surprise. That won't be happening.
And for good reason. She is doing so well. So well in fact that they want her to continue to grow and give her heart the best chance possible to only go in for one repair. If they did it now, it still may be iffy that Pulmonary Artery would be large enough to ensure a lasting, life-long repair. And since her 3 previous echos show that her PS (pulmonary stenosis) has remained unchanged and not worsened, her stats remain stable in the 83-85% range, and overall she is doing well, they want her to keep going. And going, going, going. All the way to a year or beyond. Apparently, most DORV babies (about 80%) have started showing signs of worsening PS by this time or earlier and that's why the 6-9 month of life timeframe for surgical repair is typical for most DORV babies. However, 20% are like Q and the PS just remains stable and it allows the babies more time before being thrown into a surgery. Go Quinn. Go God!
So whoa, talk about news that just threw my head and my head's schedule book into a tailspin. Of course, and I knew this would happen, I had already subconsciously planned out our spring and how it would look like when Q had her surgery soon. But obviously I am THRILLED for Quinn and what this means for her recovery and her potential to have only 1 lifesaving sugery. The timeframe we are looking at right now is late summer/early fall. They will DEFINITELY do it well before cold/flu season goes into full effect -- so I guess we are thinking late August or September now. Summer is difficult to get surgery space and surgeons because of all of the school age kids having their "tune up" surgeries or more elective time frame surgeries - bless their hearts on their summer break :(
We also had the surgeon discussion again - I reminded my cardiologist that there is one for our family at this point. He remembered and in fact had spoken to Dr. Fraser just that day about us and he remembered Q's case from a few months back (and not to mention the previous emails and conversations with one of my besties, Katie). I guess the difficult part is this.... in the world of CHD's, Q's particular case of DORV is not the most complicated out there. TCH has several highly qualified & respected surgeons on board that would all be wonderful. Yet, the way I look at it, it's pretty black and white. My daughter's defect, the most severe or just simply a "complicated, different heart", still requires surgery. An 8 to 10 hour surgery. Where they stop the heart and alter the blood flow to her arteries. For that kind of surgery, I want the BEST. And by the best, I just mean the guy who is the most experienced with performing all types of CHD repairs and has seen just about everything. I think it's only natural that Matt & I would want that for Quinn.
Thankfully we have a really good rapport with our cardiologist - he's a younger type guy and pretty easy going and open to talk to. We laugh and joke a lot when we see him which is nice, but he also knows his stuff. Anyway, I think my cardiologist may have made some comment like "Meagan, can I remind you that Dr. Fraser is the Chief of Surgery over all of Texas Childrens? He's pretty difficult to get into because he does a lot of travel and performs most of the extremely complicated cases."
Given our rapport with said cardiologist, I believe my response was something of the sort (mostly joking of course & please forgive my slip of the tongue), "Dr. S, I could give a damn if he was the Chief of Surgery for the entire city of Houston. He is the best with this kind of stuff. Period. I want the best for my daughter. Fight for him. Pull whatever strings you need to. Play my best friend card. I don't care. Let's make it happen. If my job for the next 3 months until we see you again is to work at fattening up my daughter, then your job is to make sure Dr. F continues to remember Q's case. Period."
Whew. That was coming from a momma who desperately needed a diet coke and who had been cooped up in an airless waiting room for way too long. But the sentiment was right - my mother hen instinct just kind of took over.
(And here's my disclaimer again - if we end up with another surgeon, I will be happy because I know it will be orchestrated from above. And I know that each surgeon on that team is simply amazing because if they are a part of the TCH cardiology team, then they HAVE to be. It's that simple. But I'm going to fight like hell to get the one I want first. Then we'll let the pieces fall where they may.)
So as a wrap up to the long, and as promised - delirious post, we go back to the cardiologists sometime in April for just a check up - no echo thank goodness! Then we have been given the ok (assuming her stats remain stable) for a family vacay in June - yay! After the short vacation, we will see the team again one last time before her surgery date. The idea is that Q will be presented at the beginning of the month and then our meeting in June would be with both our cardiologist and the surgeon. Surgery would likely follow in August or September. So we'll see what happens. Everytime I lay a plan out in my head, it's blown to smithereens. I think that's God's little way of continuing to remind me that the only thing that matters is His Plan, His Time, His Child.
Got it, God. Working on it. Pleeing for your patience with me.
And thanking You for your incredible faithfulness in supporting us on this journey. You have never left Quinn's side - and that's the only way I can explain how very GOOD she was during a very difficult day. You must have provided her some kind of peace because Lord knows, her momma wasn't doing a great job at doing that. Thank you, my sweet Lord & Savior for not forsaking or abandoning us. Knowing Jer. 29:11 is true today more than ever.
In His Blessed Hands,
