Surrender

I've struggled to find the right words to describe the past few days, and still as I sit here writing, there are no words that can capture how much our hearts have been torn to pieces. Sometimes I think to myself that if I don't talk about it, then it's not real. But, the reality of the situation cannot hide forever, and at some point, we have to come to terms with that.

Jonathan and I have spent the last 36 hours grieving over a situation that doesn't have a positive prognosis. We both always agreed that Conley's quality of life was the most important thing for him and for us as a family. Conley's spirit and personality shines so bright, and he exhibits a desire for genuine happiness that cannot be taught. 

Going into his initial procedure to remove the tumor, we always knew that the doctors were concerned about how his body would react to such a traumatic surgery, particularly given his other medical issues. Although we have had some sporadic progress, the reality of the situition is that we have been faced with many complications thus far, that have been leading us and doctors to question weather Conley we'll make it through this situation. 

As I've mentioned in previous posts, Conley has already had two setbacks with excessive bleeding in his belly, in addition to having difficulties with dialysis and finding a clot in a place that limits blood flow to and from the heart. While these issues alone do not typically cause a problem because there are interventions that can be done, the combination of all of these issues does not suggest a positive prognosis. While I feel like we've had many moments of life or death situations throughout this journey, there was a moment yesterday when Conley was almost out of options. He was too swollen from surgery to adequately do dialysis, and the impact of not doing dialysis made his lungs collapse and his heart unable to have adequate blood flow.

There have been several times throughout our journey with Conley, starting from in utero, that conversations have come up about whether Conley would survive, and somehow, he always found a way. We have never had to REALLY talk about the 'what ifs' because it has always worked out. It never gets easier to have that conversation with a doctor, let alone with your spouse. Calling Jonathan on the phone yesterday to let him know he should come down to the hospital to be with Conley was probably one of the hardest phone calls I've ever had to make. 

We sat down with a range of specialists, including a psychologist and the palliative care team (a team to help with relief of symptoms and improving quality of life) to talk about the reality of the situation we are facing. We all talked about how Conley has separated himself from other babies throughout his medical trials based on his happy, feisty and warrior like spirit, as he has always had a smile on his face despite anything that has happened to him. Even after being admitted to the ER for bleeding, the next morning he was up smiling  and clapping like nothing had happened. He beat all the odds in utero and in the NICU so he could spend a solid eight months at home, and no one would ever have predicted that. That is a miracle in itself. But as I've mentioned in previous posts, since his surgery two weeks ago, the Conley we know has not returned. We are not giving up on him and we continue to wait for him to bring back the smile and happy go lucky spirit that he's always shown, but as the days trickle away and the complications add up, Jonathan and I have been forced to face some difficult questions about the type of life we think Conley would want. 

One thing I know for sure is that Conley has always been able to tell us when he's okay, or when something is wrong. Despite any medical intervention, Conley has always called the shots. I feel like I've always had a powerful connection with Conley and many doctors have commented on how much intuition I have when it comes to knowing him, advocating for him and making decisions on his behalf. There's never been a question in my mind about how I would do anything to make sure he was given the best quality of life. Until now. Seeing him in this state makes it hard to believe the decisions we've made are the right ones. He is still intubated, heavily sedated, restrained to the bed and being given a tranquilizer and paralytic. If I knew this was only temporary, I could do it, knowing my baby boy would easily return in a few days. But there is no way to know. It would be "easy" to know there was no option; no medical intervention. But, when you, as a parent, are left to decide if these interventions, and actions are worth the pain and suffering of your child, the answers become so complex.

Last night I stayed up and watched videos of Conley over the past couple months, and all I can think about is how much I miss him and how I would give anything to see him smile again. Sometimes I feel myself thinking selfishly about how I would feel so much better if he would just wake up and give me a sign that he's okay, like clap is hands or make fart noises. That all this medical intervention is worth it, and that there will be a happy ending to this part of his journey so we could have eight more months together.

There have been many talks about how medical technology has transformed into a live saving field, yet somehow quantity in life has surpassed quality of life. While Conley seems to have made it past a serious hurdle once again, there are several long term issues that have come to light, making our end journey of a kidney transplant more difficult, and potentially impossible. Maybe that the constant fight and ongoing battle will not end victorous regardless of how much ahonui we have. I wish I could wrap my head around all of this, and I've tried. But somehow along the way, I've realized that the best thing I can do for both Conley and myself, is to surrender completely to the unknown. And listen to him, as I always have. He will guide us, and give us what we need to move forward; whatever direction that may be.