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Liz Stokes

Neverending Story

This is truly one of my favorite books and movies and it’s the only thing that comes to mind right now regarding Carter.

We all know that no one has a Neverending Story. At some point in time we must accept that maybe what we’re fighting for isn’t the same thing God is planning for us. At what point are we doing more harm then help?

We’ve come to that point with Carter.

Yesterday was a day of grieving and sadness. He went and had his heart cath and the results came back perfect. There was no sign of any blockage and for the first time in 7.5 months Carter had a perfect heart cath. We were devastated but not ready to say goodbye to Carter. We couldn’t morally or ethically say goodbye to him knowing that he was still alive and functioning fine.

After seeing Carter was “ok” from his cath I turned to Rob and told him I needed to get out of the hospital. We had gift card to Texas Roadhouse and that’s where we went for dinner. On the ride there it was quiet. I knew what the conversation was going to be but I just didn’t want to talk about it. We spent dinner talking about everything and it was honestly one of the best dates I’d had in a long time- even when the conversation turned back to Carter. We talked about funeral plans and getting them started but that’s all we could muster up without getting too emotional in public.

The ride back to the hospital was quiet until I saw an ambulance pull out in front of us and my brain went back to an earlier thought. Organ donation. I said it out loud for the first time but I also made it clear to Rob I didn’t think I could send him to the OR “alive” to have his organs harvested. It was the equivalent of murder to me but I have to accept at the same time it was going to happen not matter what. If they turned off the machine he’s going to pass, if the machine fails he’s going to pass, if there’s any complication… He’s going to pass. It’s just all really hard. No parent should ever have to think these thoughts.

So we come back to the hospital room keeping in mind that coming 48 hours are our last precious moments with Carter. We need to love him, touch him, and kiss him continuously, make him know that’s he’s not alone and we will always be here for him.

In the meantime, Rob had to step out to call his mom and he was gone a bit longer than I expected him to be. When he returned, he was sobbing. He told me he had just ran into Dr. Bryant in the hallway so he (Rob) said hi. It opened a floodgate of conversation and what we learned was that he has plans for Carter. He had two more ideas to help Carter get on to the temporary device so that we could get him off ECMO and onto the transplant list. He was NOT giving up on Carter.

We went from our deepest darkest places to that light at the end of the tunnel in a sixteenth of a second. Immediately the stress was relieved from our bodies but don’t get us wrong we know and it was made clear to us that there’s still a chance this all will not work and we’re just prolonging the inevitable. But to hear that Carter wasn’t being given up on when we, as parents, truly thought he was was a miracle in itself.

So this afternoon we have to sit down with the team because the team “leader” has gotten wind that everyone is giving us their opinions (because we’re asking) and that shouldn’t be the case. We’re sitting down in a large meeting to go over the next steps to take with Carter. We’ll be discussing the procedures and what all they entail. We’ll also be discussing if the procedures don’t work, what the plan will be. Then that will be the end of discussion. So in other words, I feel, the team is getting “reprimanded” and I honestly feel like I am too but I don’t care. I’m going to keep asking and talking because I’m gathering data and intel for my son’s life and for myself. This meeting actually ticks me off because it feels more like a power trip for the person in charge to say I’m the boss and my feelings got hurt because protocol or whatever was broken and that’s not fair because that’s my job etc. etc.

Moving on…

This is not a recovery case. We’re not looking for Carter to get better after this surgery. Is there a chance he will and end up not needing the temporary VAD device? Yes. BUT it’ll take a miracle and that won’t change the fact that he will need a new heart. All these steps are being done to prepare him to get a new heart.

So to my prayer warriors. God is moving the mountain! And we are ever so thankful that he’s starting to move it!

Rob and I need you now more than ever (I know, I’ve been saying that A LOT lately). Selfishly we ask that this pending surgery goes the way Dr. Bryant wants it to and Carter recovers (in the sense of accepts) the procedure and is able to function well up to and beyond when we’re able to move to the next surgery- transplant. We pray Carter has minimal minor issues with the transplant and healing and that’s he’s able to live the life he wants to live to his fullest and happiest self. We pray that all his organs continue to function at their absolute best and most of all his lungs improve and are able to function on their own.

That’s a lot to pray for. There’s a lot of faith, hope, and pixie dust needed because we’re literally nearing a crossroad and we as Mom and Dad know what we want but what we want may not be in God’s plan.  IMG_0196

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