Sunday, March 29, 2015

A thankful heart

We are home! We are happy and healthy and resting ... or trying to rest. Jocelyn's open-heart surgery was Monday morning and on one hand, I feel like I've lived a thousand lifetimes since then. And then other times, it feels as if this week never even happened. I am physically exhausted from [not] sleeping at the hospital. But I'm surprisingly mentally exhausted as well. So I'm going to do my best to remember all those hazy details over the next few days (because it will inevitably take me that long to finish this up) and recount it all for you in layman speak.

I'm not a medical person, I avoid the doctor at all costs, and up until this week, I wasn't really interested in anything remotely medical. So I'll be using my own words to hash this all out ... with apologies to all my nurse and doctor friends who may be scrunching up there noses at my interpretations. Carry on!

Whenever anyone at the hospital asked how we (the parents) were doing, they always followed up with "the night before is the worst part, right?" Well, I have to disagree (I'll share my thoughts on the "worst part" in a minute.) The night before wasn't great, but it wasn't too bad either. I didn't have the best sleep, but it may have helped to have it cut short by a few hours so we could make it to the hospital by 6:00am. Jon made scrambled eggs for breakfast and despite having no appetite whatsoever, I forced myself to eat knowing that another meal opportunity could be a very long ways off. We slipped Joci out of bed a little after 5:00am and moved her right to the car, hoping she'd fall back to sleep on the way there. She hadn't had anything to eat since a little snack the night before. And she wasn't allowed to eat anything before surgery. So I was crossing my fingers that she'd sleep most of the morning and that our pre-op stuff would move fairly quickly.

It was nice to have "smiley" pictures to look back on during the hardest days at the hospital.
She didn't sleep. But she never complained about being hungry either. I think she was just too enthralled with having mommy and daddy all to herself and exploring the big, shiny building that is Johns Hopkins.

A word about that complex (and I use that term intentionally, the place is a massive maze)--it was a huge blessing for Joci to have her surgery there. Being a military family, we're used to being told what to do. We were told to go to Hopkins. We were told the surgeon we'd been assigned to. And so that's what we did. So I still find it amazing that people will travel from all over not just the country, but the world, to get treated here, in our backyard. When I found out that some families will research and actually choose Joci's surgeon to treat their child's heart defect because he's so well-known in his field, I began to feel a little guilty that the only reason I had Googled him was after her surgery was scheduled and just because I wanted to prepare myself before we shook hands.

Just killin' time!
What I'm trying to say is, coming from an extremely-limited hospital experience of two Naval hospital births (where I had to practically pursue legal action in the midst of labor just to avoid getting a needle stuck in my back) to the legend of Johns Hopkins was quite an eye-opener. I guess I'm still in shock as to how nice and accommodating all the nurses and staff were ... and I wasn't even the patient!

And we met A LOT of people during our stay. Sooo many teams. So many faces and I have no idea who they were or what their purpose was. There was the nurse that walked us back to the pre-op room and did the whole vital thing. Another nurse that came to discuss anesthesia paperwork. Some other person I don't remember. And then the surgeon came to check-in and shake our hand. Eventually, 7:30 rolled around and it was time to walk to the operating room.

They allowed Jon and I to be with Joci while she went under anesthesia, so we had to put on gowns, hats, and masks. And this is what we both agree was, by far, the most difficult part of the whole experience. And I'm still not exactly sure why. I never really feared for Joci's life while she was in surgery, but I just hated being away from her. And I hated that she was too young to understand. I hated that she trusted me to keep her safe and I was about to send her off to the worst experience of her life ... and then walk away.

So we began the walk from pre-op to the OR, the walk where my feet felt like lead, my throat closed over, and tears were swimming in my eyes. There were already people waiting in the OR. Someone directed us to lay her on a bed, one of us on each side to hold an arm and a leg, because typically kids will flail around, scream, eyes roll back in their heads ... Not Joci. She just laid there looking back and forth between Jon and I. Just looking at us--eyes wide with unanswered questions.

They said it wouldn't take long, but it's not true. It's an eternity when you're standing there waiting for your baby girl to cross the threshold of fear and pain. I tried not to cry, but I couldn't help it. And then I started to worry that the nurses would think I was one of those weak, messy mothers that would need carried out of the room. And I hated that my daughter's last memory of me was wearing a funny hat and mask with huge tears in my eyes.

Her eyelids finally closed for good and they allowed us to give her one final kiss before escorting us back to the waiting room. I don't remember walking back. I just remember one older nurse walking next to me, rubbing my arm, telling me it was going to be okay.

So Jon and I went and found seats and just sat there, staring at nothing. We had brought books and magazine, movies on the iPad, snacks and drinks--all stuff to keep us busy. Instead we just sat there, completely consumed by our little girl down the hall.

If you're going to stare, might as well have something to stare at.
The waiting room was large and full. There's a TV screen that posts your child's number and a timeline to give you an idea of where they're at in the surgery. They also take your cell phone number and write down a description of what you're wearing so they can give you periodic updates. There were a lot of surgeries going on, most of them shorter than Joci's, so we watched a number of families come and leave during our stint there.

Taking into consideration all the sick children we came across during our stay, I felt a little odd being there. Guilty isn't quite the right word. But when you're dealing with a surgeon who's resume includes baby heart transplants and artificial hearts, a little hole doesn't seem like such a big deal. For him, Joci's surgery was just like another day in the office.

And then there was a couple sitting next to us in the waiting room. I have no idea who they were or why they were there. I just know that you could feel their relief flood the room when their son's surgeon came, sat down next to them and actually said "you can go ahead and start that college fund now." There was another man I met while staying in the PICU who had brought his son up from Norfolk, Virginia for his seventh surgery. SEVEN!! When you start putting things into perspective, a routine open-heart surgery isn't so bad.

They were supposed to call us when they made the first incision, which I thought would be sometime around 9:00am. That time came and went and we hadn't heard anything. Sometime after 9:30 a lady from the front desk came to tell us that Joci was on bypass (a nice way of saying your daughter is being kept alive by a machine right now.) Which was supposed to be our second phone call. They had told us to expect her to be on bypass for 30-45 minutes. So when over an hour went by without hearing anything we both started to get really nervous.

Finally, around 11:30, we saw the surgeon step in to the room. He sought us out and first thing he did was tell us Joci was fine. The procedure was over and she did great! The hole in her heart was bigger than they had anticipated--slightly larger than the size of a nickel (her heart is about the size of her fist!) Which meant it occupied almost her entire septum wall. The good news is they were able to use her own heart tissue to repair the hole. The patch was successful and the surgeon said the dilated half of her heart (that was working extra hard to pump blood) had reduced to half its size before he had even finished with the surgery!

Picture a heart the size of this little fist.
Then he had even more good news. While they sometimes have to use electric shock to get the heart restarted after coming off bypass, Joci's heart had restarted on its own. We had known that typically they attach wires to the surface of the heart at the end of surgery. This is a temporary pacemaker that helps regulate her heartbeat while the heart is recovering from the stress of the surgery. But the surgeon told us that Joci wouldn't need the pacemaker after all, since her heart was already doing so well on its own. And finally, he said her breathing tube would be out before she left the OR. So far, it seemed like everything had been best case scenario!

My only beef with the whole process was the thymus gland. Or lack of thymus gland, because they took Joci's out during surgery. Apparently, they do this to all heart surgery patients. I have no idea why they never told us ahead of time. In fact, we would have never known if a nurse practitioner hadn't approached us in the middle of the surgery and asked us to sign a form allowing the hospital to donate Joci's thymus gland to a company that uses the stem cells to create some sort of medicine for sick children (?? major waiting room brain set in at this point!).

They say the thymus gland is for secondary immunity support and isn't even functional beyond the age of 14. But still, it would have been nice to know. And then I made the mistake of hopping on Google in the middle of the surgery and came across all these horrible articles and Facebook groups dedicated to children with auto-immune diseases as a result of not having a thymus gland. I eventually had to shut down my phone and give myself a little pep talk. Because at the end of the day, my God is bigger than a thymus gland. And right now I just want to focus on my baby girl's new, healthy heart!

Reunited in the PICU, still very, very sleepy.
It was almost 1:00 by the time they came to take us back to the PICU. I'm not sure how long she had been back there before us, but the nurse assigned to her said she was practically bored because Joci was doing so well. She pointed to the pole that holds all the medicine pumps and said, "See? She's not even on half of these. We just have them ready in case." She never needed any medicine for her actual heart. Nor did she need anything for her blood pressure, which had completely regulated on its own. Furthermore, she only had one chest tube, not two, like we had been told. According Nurse Patty, she'd never seen a cardio surgery patient with only one chest tube. In fact, she'd never seen one doing this well before. (It has crossed my mind that she says this kind of stuff to all the parents, kinda like when the nurses would tell Joci she was the cutest kid on the floor, but I'm still gonna go for it!)

So the nurse kept saying how great she was doing, but it's a little different when you're the parent. All I saw was my tiny, pale baby sleeping on this huge, HUGE bed. And wires and tubes EVERYWHERE. Let me see if I can get this all straight. She was on oxygen (just for the first hour or so.) There was an IV stitched into her neck to deliver pain meds right to her heart (what we didn't know at the time was that although it entered into the right side of her neck, it extended several inches into her body.) I can't remember the original pain medication she was on but after a few hours they switched to morphine. There was a regular IV line in her right hand, along with a sensor on her finger to read her oxygen levels.

She looked so tiny in a big bed in a big room!
There was an arterial line in her left hand that they used to easily take blood for all the lab work she would need. There was, obviously, the huge incision on her chest, covered with a gauze patch. And below that was the chest tube (which extended up into and curled around in her chest cavity to drain blood and fluid--yeah, it made me queasy.) She had a foley catheter. There was a temperature gauge up her rectum to read her internal temperature and one on the bottom of her foot so they could read the temperature of her extremities (thus verifying her heart was indeed pumping strong enough to circulate her body.) And finally, there were EKG wires on the backs of her shoulders and sides to monitor her heart rhythm. Needless to say, I was afraid to touch her.

But the nurse assured us it would be alright, and while Joci only opened her eyes a few times those first few hours, she made certain to grip our fingers in her tiny fist. We pulled two chairs up on either side of her bed and just sat there, each holding a hand, waiting for her to wake up.

To be continued...

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