Seven days post-op.
Oh, where to start trying to cram everything from the last week into words?
I'll start with talking to Ally about what was to come, which is a teeny bit difficult considering she's four. How do you explain open-heart surgery to a four year old?
Fortunately someone somewhere out there has thought of this, and we found a few articles/blog posts with suggestions based on age. For a 3-4 year old, the almighty They recommended keeping it simple (duh) and only telling the child the day before. Long enough to let them process, not so long that they might forget or freak out.
I still don't know how much she understood, but we asked her if she remembered the doctors taking pictures of her heart and explained that they had seen that her heart wasn't working the way it was supposed to. We told her that the doctors were going to fix her heart, that we would be sleeping at the hospital for a little while, and that Mommy and Daddy would stay with her the whole time. She didn't get upset, but again, I'm not sure she really understood much of it. Who can say?
5AM Tuesday morning, we checked in at UAB and were sent up to the fifth floor, to wait. Then we were sent into pre-op, to wait. And wait and wait.
Pre-Surgery chest
Ally was upset when we first arrived. Nervous and afraid about all the doctors and nurses, until Reggie the PCT found some latex gloves, blew them up into balloons, and drew funny faces on them. As our family started trickling in, Ally played with the balloons, hitting them all over the tiny room. Her anesthesiologist (Dr. Anderson, I believe) came in a few times, and after getting hit in the head by balloons once or twice, he started playing with her.
Silly Balloony
Ally was relaxed and happy while we waited (and waited and waited) on what we grew to refer to as "Kirklin Time".
Ally and Shaun the Sheep, all prepped for surgery.
A little over half an hour after surgery was supposed to start, Ally was given Versed to relax her, and I lay down on her bed with her, holding her until she fell asleep. The family filed out, leaving me crying over my sleeping daughter, until they came and said it was time to go. I can say without a doubt that I have never had to do anything as difficult as peeling myself off that gurney and letting them take her away, wondering if we were making the right decision after all.
An hour later, we got the update that surgery had begun.
My brother's mother-in-law is a nurse in the CICU at UAB, and she made sure she was on the schedule for that day (God bless you, Robbie), so as we waited and she had opportunities, she'd check on the progress and come out to tell us what was going on and, more importantly, that Ally was okay. She also brought out and introduced us to the nurses who would be responsible for Ally once she was out of surgery and moved into the CICU.
The surgery lasted seven and a half hours, easily the longest seven and a half hours of my life. Ally was put on and taken off bypass (heart/lung machine) three times.
The first time was what we knew would happen. Her heart was stopped, and the septal myomectomy (removal of part of the enlarged heart muscle) was performed. When that was finished, Dr. Kirklin took her off bypass to see how this would affect the Mitral Valve regurgitation. He wasn't satisfied with it, so he put her BACK on bypass and put a stitch in the Mitral Valve, and took her off again.
This is when Dr. Kirklin decided to flex his cardiothorasic surgeon genius muscles and put her back on bypass to go farther into her heart (mid-atrial something-or-other) to remove even more obstruction. Originally there had been no plan to do this - I don't even remember anyone mentioning it before the surgery - because it's highly complex and difficult to reach that far through her itty bitty valve.
Finally, after six hours or so, Dr. Kirklin finished up his part and left her in the hands of Dr. Dabal for the ICD part of the surgery, and left the OR (in theory) to come talk to us. At this point, we didn't know all of the above, in spite of Robbie doing her best to keep us informed. The information desk had been paging us frequently (sometimes to say "Everything's fine".... REALLY? Don't give me a heart attack like that, people) but I seriously doubt that any number of informative reassurances would've made a difference in how it felt to hear that the doctor needed to speak with us, without knowing WHY she'd been on bypass three times.
I mentioned the phrase "Kirklin Time" earlier, and to be honest it became the phrase of the day. Considering he estimated surgery time to be half of what it actually was, it was a good thing that we were warned - several times - that he just simply does not have any concept of time when he's in the operating room. I find that encouraging, because in my experience that means you enjoy your work. He's so focused on what he's doing that he's not watching the clock.
As it happens, he's not big on watching the clock any time, so we waited in the consultation room. Robbie went looking for him, reminded him we were there. When that didn't work, Dr. Kirklin's wife (yes, his wife) called him and said "You've kept them waiting long enough, Jim." and that was motivation enough to get him moving.
Fortunately, it was all good news. In fact, Dr. Kirklin told us that the initial goal had been a 50% reduction in the obstruction, and he'd successfully reduced it by 80%. Yay!
Just to throw you a few more numbers, the odds that she'll have to have this particular surgery again are only 10%, so that's good news. She WILL have to have the ICD replaced in 8-10 years when the battery starts to run out, but that - unless I am mistaken - is an outpatient procedure, maybe a two-inch incision. Not that big a deal.
Several people have asked me if that means no more heart surgery for her, and no, that's not what it means. The HCM and the obstruction they removed last week are related but that doesn't mean that having this surgery has fixed her HCM. The only fix for it is a heart transplant, and realistically that could someday be the course of action for her. For now, however, the reduction of the obstruction, the ICD, and keeping her physical exertion to a minimum are the best way to keep her safe.
So after seven and a half hours in surgery, my baby girl was brought into the CICU and we were allowed in to see her.
Two chest tubes, IVs in each hand and one in her neck, a breathing tube, heart catheter, lead wires, blood pressure cuff, blood oxygen monitor, and an incision from the base of her neck down to just a couple of inches above her bellybutton... it's extraordinarily difficult to see your child looking that way.
It's very, very hard.
Our family came in to see with their own eyes that she was okay - tubes and wires notwithstanding - and then slowly started filing out again, headed home after a very long day of hospital waiting room waiting.
After most of the family left, Al and I headed down to the cafeteria with my parents to eat something for basically the first time all day. I'd taken exactly two bites of my food when my cellphone rang, and it was Ally's nurse.
"Where are you?" She asked me. I told her we were in the cafeteria, and then she gave me a heart attack by saying "I'm going to need you to come back up to the unit... right away. We might be going back into the OR."
Which of course is the last thing you want to hear.
As it turns out, the bleeding from Ally's chest tubes had not slowed the way it should have by that point, and Dr. Kirklin felt he needed to take her back into surgery to locate and stop the bleeding. While everyone assured us it was a strictly surgical problem and that she was in no immediate danger, the heart of a parent can't take that for face value.
My brother and sisters-in-law turned around just as they were almost home, and came back to the hospital.
We watched and waited while the surgical team was called back in from their homes - Dr. Kirklin's surgical nurse was on her way out the door to see her favorite comedian when she got the page - and I sent out an update and a call to prayer to my family, friends, and coworkers. They forwarded it on to others and then those people forwarded it on to still others, until who knows how many people across the country were praying for her.
In literally fifteen minutes, just as the doctor and surgical team started gathering in the CICU, the bleeding stopped almost completely. They were all stunned. It just simply should not have happened that way, going from that much bleeding to right down to where it was supposed to be. The attending physician looked at my husband and I and said "Y'all are praying, aren't you?"
Oh yes, but not just us.
Finally, after Dr. Kirklin made the call that we didn't need to go back into surgery after all, I sent out an update via text message that it was a false alarm.
My friend Kim responded saying: "Well now y'all are just fishing for prayers! I sent out a mass text to my bible group and then you said false alarm! False alarm, or quick prayer power? Who knows?!"
Based on the reaction of the nurses and doctors... it wasn't a false alarm. It was just a miracle.
Man, what a day.
(to be continued.)
