Hell.... that's how I describe the past 30+ hours.... Hell.
I never, ever again wish to relive the experience. Hopefully, we won't have to- obviously there will be more surgeries, but nothing quite as bad as this one (hopefully!!).
Yesterday started out fairly normal. We had a VERY hungry and cranky child who was waiting for surgery. As surgery time came closer and closer, she became crankier and crankier- requiring more and more sedative to keep her calm.
The surgeon had come in the day before to meet with us and explain the "ideal" procedure and the potential risks. Even still, nothing prepared us for what was to come. Dr. Pearl explained that he would be opening the chest, dissecting away any residual scar tissue, and would then be able to determine what size conduit he would be able to fit into her chest. Essentially, the conduit is an animal-type artery that connects from her heart and branches to connect to her pulmonary arteries. He was hoping to be able to get a 16 mm conduit, but would settle for a 14 or 15, if necessary. Dr. Pearl explained that he would place a patch over the hole in her heart, working from the hole where the conduit would sit. After the patch, he'd attach the conduit, take her off bypass, and send her to recovery. Simple enough, right? Of course, there were risks- the patch might have to be punctured to even out the pressures, which is normal, and it would be possible that her electric conduction of her heart could be off after surgery, as the patch sits right on the conductor tissue, meaning she would require a pacemaker. This would be very, very rare. Even more rare, she could eventually require a heart transplant. Dr. Pearl was almost positive he'd be leaving her chest open (open sternum) to wait out the swelling. We agreed, asked a million and one questions, and sighed with relief as we prepped for the next day @ 12:30 pm.
My dad flew in from Wisconsin. Thank Goodness he was able to spend some quality "normal" time with Grace before her procedure. The two of them are just precious together- and both STUBBORN!
We all spent some time with Grace before she went for surgery. We got her to laugh, smile and even cry with all of us. We were all very emotional. I love this face! Grace is pouting, while my dad is grinning ear-to-ear. Priceless!
Approximately 1 hour before surgery, the anesthesiologist came in to meet with us. Grace has had a ton of anesthesia procedures, so I expected to recognize or even know the doctor, but no... nothing. I had never seen this guy before. Not that it means something terrible, it just bumped my anxiety level a little higher. We also met with the nurse who promised to meet with us every 1-1.5 hours. We were nervous, but eerily calm. We walked her down the hallway to the OR and said our Godspeeds.
Then it was time to wait.... At 3:30 (2 hours after surgery was to begin) we still hadn't heard anything. Angie, the RN, had promised to update as before surgery started, before bypass started, when bypass ended, etc. Nothing.... I thought, okay, no news is good news.... and then my curiosity got the better part of me. I went into the NICU to see if any of my connections could get a status update for me. Luckily, they could. Surgery had begun, bypass had begun, and she was stable. Whew! Huge sigh of relief. We didn't hear anything again until a cardiologist came out to check on us. We advised him that we hadn't heard ANYTHING other than from the NICU and he went in to the OR to get us some info. Apparently, after dissecting her, her pulmonary arteries were too tiny to be able to handle the pressures of blood flow with a conduit, and Dr. Pearl was considering just replacing her shunt with another bigger shunt, and waiting 6 months-1 year to surgically do the full repair. My heart sunk into my chest. I tried so hard to not be dissapointed- obviously, I wanted what was best and safest for Grace, but I also wanted to have a "real" life with her. Felix and I had talked about trips to Sedona, flying in an airplane with her, seeing our families, etc. None of that would be possible with just the shunt. It was like all this drama for nothing, well, something, because her old shunt had failed. They told us that if we would have caught this sooner (not "we" but we as a team) her shunt wouldn't have failed so miserably, and her collateral arteries wouldn't have grown, thus competing for blood supply with the pulmonary arteries, causing them to have stenosis, or narrowing. The worst part, Grace wouldn't have needed bypass for just a shunt procedure, and she had already been on bypass for 2+ hours at this point. Another 2 hours went by and the same cardiologist came by to check on us. Again, we advised that he was the only person truly keeping us up to date. He went back into the OR a 2nd time to get the status. Dr. Pearl had went forward with the full repair- and only after he finished would we know if it was the right decision, or if he'd have to tear it all down again and start over. We waited, and waited, and waited. Finally, a charge nurse came out to let us know that they had been able to put in a 12mm conduit (4mm smaller than they had hoped for), but the pressures on one side of the heart were too great for her little body to handle. They had attempted to take her off bypass, but had no luck. They decided to punch a hole in the patch where the closure was, allowing the blue and red blood to mix, thus creating an equal pressure in both ventricles until her body grew used to the new processes. They were hoping this would work, and if not, they would be tearing down the conduit and replacing the bigger shunt, another 4+ hour procedure. Literally, I was dying waiting for these updates. At 10:30pm (9 hours after surgery began) we were told the surgery seemed to be a success. They were able to keep the conduit with the hold in the patch. They would be doing OR EKHO's and EKG's to make sure everything looked good and then taking her off bypass, and bringing her to recovery with an open sternum.
The rest is all sort of a blur, as I was massively anxious, tired, sleep deprived, emotional, etc. I literally felt like a MAC truck had run me over, and over, and over, and over again. Grace was off bypass succesfully, doing awesome, and Dr. Pearl was able to close her sternum, but was experiencing more bleeding than he was comfortable with. He gave her plasma and platelets until he hit her max, and then gave her something called "Factor 7"- I guess it's a last ditch resort to stop bleeding... some crazy miracle drug that is very expensive, and I'm told my insurance company will probably be sending me hate mail.... There would be no telling if the Factor 7 worked until 6-8 hours post surgery, and if it had not stopped, it was possible that another operation would be performed to control bleeding.
It's now 12:30 pm on Thursday (the day after surgery) and approximately 12 hours post surgery. The bleeding is good, Grace is good, and all is well for the road to recovery.
Grace is ventilated, and will be for another day or two, but she's healthy. She keeps kicking, doing aerobic moves in bed, which isn't good- but shows she is feisty, and ready to be done with this. Unfortunately, the more she is active, the more CO2 and Lactic Acid she accumulates, meaning the longer she'll have to be ventilated. Luckily, after trying seriously 6 sedatives in tandem, they've found the combination to calm her. Every now and then she still twitches or kicks, but her blood gas results are getting better.
The doctor and surgical team just came in while I was typing this last sentence. Changes again, she's doing well, so they're decreasing her ventilator support while increasing her sedatives. Essentially, they'll give her less help breathing, but more sedation to keep her from fighting it, creating more buildup of CO2 and lactic acid.
Why do I know these terms? I scare myself some times.... I'm a heart mom, though. Through and through. I've undergone baptism by fire, I suppose. It's funny, people comment about how they can't imagine going through something like this with their little one and that they wish I would be able to have a healthy child experience, either with Grace or my next. However, to me, this is ALL I know- I wouldn't know what to do if I had to bottlefeed every few hours, or what to do if I didn't have a huge medical team that will answer my every question, thought, and even let me propose potential treatment ideas. This IS my life, and I'm really okay with it. To be frank, it really does frighten me more to think of what it would be like to parent a "normal" child...
Well, I'm for a nap- I've been up WAY too long with WAY too little sleep...