"Sit, be with them, love them, share in their emotions."

There have been several occasions where I've attempted to sit down and write a blog, but to be honest, there has been so many little details and information thrown around the past few days that I was exhausted. It was a big weekend for Conley, and while I was very excited to see him extubated and awake, I was also very nervous about what that would bring.

I know I've talked before about making sure Conley's comfort was the priority through all of this, and there have been recent times that he has been inconsolable and in distress, leading us to worry that something more serious was wrong again. There are so many things happening in his body right now, making it really difficult to pinpoint what the symptoms represent. Therefore, as a result, when symptoms present, such as inconsolable crying and abdominal distress, there are several tests done to see if he has something more serious occuring. For example, on Monday, while it was a very exciting day for everybody to come back to work and see Conley awake and smiling, he also presented with several symptoms that made us worried he was bleeding in his belly again. But not many people knew this. It was hard for me to wrap my head around all the people coming in so excited to see him off the breathing tube and awake while in the back of my head knowing that he might eventually be bleeding again. He had to do an x-ray, echocardiogram, and an ultrasound, in addition to tons of blood work, only to find out that he was just having severe gas. Talk about trauma. The presentation that my son had when he was bleeding out and needed emergency surgery looked the same as having gas?! If we were at home, I wouldn't be able to do all of these tests by myself to know if he is having gas or if he was bleeding. Most mothers would never think "oh, my son is bleeding in his belly" when actually they just have gas. Sigh. It sure was a rollercoaster. And while it seems easy to know it was gas in hindsight, even the doctors were terrified, which helped comfort my concern that I wasn't just crazy! Of course, I was so excited for everybody to see him awake and smiling, and breathing on his own, but I also had to worry about heading down the same path that we did just one week prior to this occasion.

There have been many positive steps for Conley these past few days. Obviously, the breathing tube came out and he's showing a range of affect again. He has also been switched back to his regular feeding regimen and off TPN (which is replacement nutrition if someone is unable to eat). He is back on regular hemodialysis instead of continuous CRT. He has started physical therapy and occupational therapy to help stimulate his muscles again. These are all huge steps for Conley. However, he continues to present with conflicting issues that are having specialists make decisions based on a risk/benefit scale. No decision is free of potential complications.

As I wrote before, after finding out about a potential clot obstructing blood flow to and from the heart, Conley was started on aggressive anticoagulants to not only help reduce the size of the clot, but also to prevent him from forming additional clots. Obviously, that led to serious internal bleeding and emergency surgery, almost costing him his life. During all this chaos, some genetic screening was done and it was found that Conley is a carrier for what is called Factor V Leiden Thrombiphilia, which is a genetic disorder of blood clotting. Basically, if put in situations such as surgery or blood transfusions (which he does often!), he has an increased propensity to clot, blocking blood flow to certain organs. This is a big deal since Conley is frequently on heparin during hemodialysis, which is a blood thinner/anticoagulant, so he does not clot when attempting to perform adequate dialysis. While it seems only necessary for him to be a medication in order to prevent clotting, the last time a more aggressive approach was used, he bled excessively. Given all the updated information, the hemotologist recommended that we use a continuous heparin drip which should hopefully prevent further clots without a significant increased risk of bleeding. We shall see. The heparin drip started last night.

I've had a lot of time to really sit down and contemplate the things we've experienced in the past few months. For most who know me, I am not a very religious person, though I'm not opposed to religion either. I am actually very open to understanding religion and having conversations about it. I believe everyone has their own coping methods and ways of comfort. Facing such a horrendous situation has made me really question the idea of prayer. I recently started going to the chapel, and before you get too excited about my intentions, let me tell you that part of me going there was to question the idea of prayer. I have wondered many times that if so many people are praying for Conley, then why do horrible things keep happening? What kind of person would continue putting a baby through such pain and suffering just to teach a lesson? On top of that, our experience of course has led many people to tell us they are praying for us, for Conley and for our situation. I think the hardest part of all the praying is that when people tell me they are praying for a certain outcome, and it does not happen, or it actually ends up the opposite, it almost feels like Conley (or us) are not worthy of the prayer and that we have somehow failed others or God in whatever lesson he is teaching us. And that has led Jonathan and I to become even more angry and seperate from the idea of prayer and God. For people who were sitting in the middle of the spectrum with regards to religion, there is this idea that prayer can help us move to a positive place and when that does not happen, it almost forces us the opposite way of not believing instead of reinforcing the idea that prayer works.

I don't mean to start controversy with this post, but I am just being honest about someone who is not religious and how religious messages can impact our ability to believe in a higher power. This the specifically why I have asked people to not pray for a certain outcome and to focus more on the process that we are experiencing as opposed to a specific road we should end up on. Each time I have gone to the chapel, I have asked for Conley's comfort and for him to suffer less, and have focused more on the process than on the outcome of our circumstances. It's almost like I had to truly accept the fact that my son may die in order for him to live. And let me tell you, there have been times that I thought he may die, but I hadn't really accepted his death. I wasn't ready, even last week. But this time, I really surrendered and understood that the prayer I had of his comfort and easing his pain may lead to his death. And I was genuinely "okay" with that. Although that would increase MY suffering, it would ease HIS pain. That's all I wanted. This made me realize that prayer should be selfless. You don't pray for the outcome you want or the result that would help you suffer less. You pray for the process regardless of the outcome. And then, you can be thankful for the process, instead of selfishly living in the outcome.

For those of you that are religious and turn to God for a way of getting through certain experiences, and you encounter someone like me who is not so sure, I ask that you contemplate how you present prayer and religion to them. I will gladly elaborate for those who are interested. To quote a good friend who is actually very much with God, "It's not fair that people say, just believe in God or give your situation to God...it's superficial and can be very short sighted. Hurtful even. It doesn't listen to the person who is experiencing the pain. It doesn't validate their feelings. It doesn't walk alongside them as we are called to do. Sit, be with them, love them, share in their emotions." Maybe my purpose in all of this is to help others understand that the way we speak about these topics has been somewhat lost...

I read an amazing blog the other day that pretty much captures exactly what I have been struggling with:
http://www.feelingsandfaith.net/not-everything-happens-for-a-reason/

Circles

Progress, as a relative term, has quickly changed to dancing in circles. Initially, I would hold on to any little positive that I could find, such as discontinuing a sedation medication or an incision healing correctly. And while it is important to be grateful and hopeful for those small achievements, as a mother and an advocate for my child, my mind quickly wanders to the other side of the coin that leaves me to question the outcome of the situation; after all this is over.

To others who do not have to be in this difficult position of understanding how the details of Conley's care can affect the quality of life as he prepares for transplant, it may be easier to cling on to any small positive as a way of maintaining hope in such a devastating situation. That is what I did; for weeks. But it is unrealiatic to remain in that mindset. As we say, our blissful ignorance has been replaced with the crucial reality. The outcome of his condition continues to remain unclear because although there have been positive steps in the small, day to day tasks, Conley is still very very sick. While none of the doctors think that any medical intervention has been excessive at this point, it would be ignorant to not allow ourselves to understand the capacity of how this can potentially impact Conley's quality of life moving forward.

The heart, lungs and kidneys are all connected, and up until now, only Conley's kidneys have been significantly impacted. We have had moments of sporadic issues with his lungs and his heart, but those were always temporary in relation to maintaining a solid position with his kidneys through dialysis. The impact that his heart and lungs have received in the past two weeks is still unknown, and there is a potential for them to continue being affected as long as Conley remains in such a critical condition. The paralytic he is on can have short (and long term) affects on mobility and strength. So why we continue to fight for stability, the outcome of the situation is still unknown. Will Conley still be the happy, feisty, warrior he has always been, or will there have been some permanent damage in other areas that can affect such a spirit? As a mother, this is hard to swallow. We wait so long and work so hard to master each milestone with a chronically ill child, and knowing they may not return to what they were is a blow to my heart. The hard part of all this is the impact of the decisions we make now are not easily understood until it is all said and done. The question of will he survive is not the only question we need to ask; it now has to be what will he be like if he survives. If you would have asked me years ago about a hypothetical situation similar to the reality we are facing today, my response easily is that I would do anything to make my child survive. But as I sit here in the midst of all of this, the answer to that question becomes much more complicated.

As I mentioned before, I find myself in a position of pure surrender to the process we are in. Trust that my surrendering is not the same as giving up. I have not given up on Conley or his medical team. Actually, I've become quite impressed with how amazing they are and how much they value my opinion as a mother. But I have come to understand and appreciate that it is not my job as a mother to learn every single aspect of his medical care while he is in such a critical position. I always thought the more I knew, the better able I was to serve as his mother, but I am realizing that the fight and anxiety of too much knowledge can become more detrimental to the process. I still come and sit at the hospital all day, every day, even though there is nothing to do. Sometimes I can't even touch him or talk to him because it can be too over stimulating. But, I'm still here and he knows that.

I have noticed a slight change in Conley within the past 24 hours. I think, like me, he has finally surrendered to the process by not fighting the medication or sedation, which in turn has made him more comfortable and suffer less. While part of me feels relieved by this observation, the other part of me worries that he has lost his fight; his feisty attitude. But, then I remember my surrendering does not mean I have given up or lost the fight. It just means that I will allow the process to happen, and allow my heart and soul to be open; to be free.

For those of you who pray, I ask that you pray specifically for Conley's comfort; that he does not suffer, and that he can allow himself to be free of any burdens that he may have, so he can rest comfortably. This is what I ask. As much as I want to see Conley awake and smiling, that desire is much less important to me than his level of comfort and suffering. It would be selfish of me to ask and pray for something that would make ME feel better or comforted, or to ask for a certain outcome that I want. So in turn, I ask that we all focus our prayers around Conley, and what would make his heart be settled, regardless of the outcome.

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.

Ahonui

Conley is back from surgery and all went as planned. Bleeding appears to have stopped and today marks Day 1 of our new path to recovery. There is some fluid that accumulated in his lungs during surgery, likely due to not having dialysis today. So, he will stay intubated until after dialysis tomorrow.

On a side note, Conley aquired the name "Warrior Pumpkin" along the way, thanks to Nana. It has followed him around these past few months. And now, I've fallen captive to another nickname, Ahonui, thanks to my friend Lucinda.

Below is a small (modified) description about what this means:

This name is Hawaiian, and commonly translated as "patience." However, that translation into English can be misleading, because, as embodied in the word "Ahonui", it doesn't carry quite the same meaning. Generally, when we talk about patience in English, we mean the ability to suffer hardship, or discomfort, or pain, without complaint. There is a sense of inner strength or courage about it, but it's essentially a passive concept. Something bad is happening to you, but you put up with it bravely for as long as it takes. As admirable as that concept might be, it doesn't carry the full meaning of "Ahonui."

The most important element when talking about Ahonui is "aho," and it also means "breath, to breathe," and "to put forth great effort." Though one must put forth great effort to accomplish his aim, that still isn't enough. The word "nui" means "big, much, many; something extending over time, or something very important." "Ahonui" is the word we use to give us a deeper understanding of love. It means "patience." And, it is also the word for "perseverance." This is not the patience of waiting in a line. It is the persistence of knocking on a door until you get an answer. It is not the patience of waiting out a storm. It is the perseverance of moving through a storm to your destination. It is not waiting to get healed. It is using everything you know and doing everything you can to make the healing happen. "Ahonui" can also be translated as "many breaths," the act of moving toward something you want for as many breaths as it takes.

Perseverance does not work on a part-time basis. Fortunately, there are many examples in this world of people who have persevered in the face of seemingly insurmountable odds, and who have accomplished more than was thought humanly possible. Imagine the patience, the persistence, the suffering, the perseverance, the AHONUI that Conley has shown to all of us. What will give you the strength to persevere in the direction of your dreams and desires, plans and goals, wishes and healings, is the love you have for something that you decide is so important, so valuable, so good, that nothing at all can replace it in your mind and in your heart. If your love is strong enough, you will have the ahonui to keep going in spite of doubt, disappointment, fear, misunderstanding, and all the people who tell you that what you want is impossible. In this infinite universe, the only impossibility is whatever you never attempt, and the only failure is when you decide to give up. Everyone knows how much Conley loves life, as shown by his happiness and smiles despite his medical complexity. His love for life is what's drives him to keep fighting; to keep shining his ahonui. And that is what makes him so special to us all.

A birthday to remember

I've had many mixed emotions leading to today. It's definitely not the way any mother wants to spend her child's birthday, let alone the 1st birthday. We obviously spent many holidays in the hospital and it never gets easier. But, today has also helped me remember Conley before all of this happened. That sweet, charismatic, strong, loving, and feisty boy we all grew to admire. Nurses who didn't know Conley pre-surgery often ask me, "Does he smile?" "Does he talk?" "Does he cry?" My first reaction has been anger and sadness, thinking that somehow who Conley is has been lost in all of this. It's sad to me that they didn't know Conley before all of this, how happy he is, how much he smiled, how he loved saying mama and clapping. How happy he made all of us. I really miss him, and today only makes that harder.

I don't know quite how to celebrate his birthday given the circumstances we are in. I should be overwhelmed and stressing about where to have his party, or what theme it will be, and what flavor smash cake I want. He shouldn't be on life support, restrained to the bed, with his stomach cut open and heading to surgery this afternoon. There are many times I have been strong despite the path we've had, but today I'm allowing myself to not be okay, to not be strong or happy. Today is what it is and I've accepted that.

A recommendation from one of Conley's doctors gave me a great way to not only help others know Conley's true personality and who he was before surgery, but to also celebrate his first year of life. I printed off several pictures of him throughout the year that resemble what an amazing boy he is. Yes, I was that lady crying in Staples as I looked through pictures of our journey so far. I made a collage of all these pictures and placed it on the wall right by his crib so everybody that came into the room could see what a journey he's had so far. It's pretty badass considering most of the supplies were donated by the hospital.

While doing this, it made me remember how sick he was in the NICU. Doctors that have known him from the beginning came in and helped me reminisce to other times we made it through setbacks. One picture I printed was the day before his first surgery at two days old, and I showed that to his same surgeon that came in to prep me for his surgery this afternoon. Another picture of daddy holding him for the first time brought memories back to his nephrologist. These moments made me remember that we've been here many times before, in utero and in the NICU. But, we overcame all that, and had eight months at home, making all those times a distant memory. That gives me hope and confidence that we can do it again. Plus, who else will be able to say they had their stomach stitched back together on their first birthday. That's going to be a pretty good college essay!

Thank you for all the birthday wishes.

Back to the beginning

I don't even know where to begin. I feel like a broken record. Unfortunately, Conley was rushed to the OR for surgery yesterday afternoon due to bleeding in his belly. The bleeding was different than last time because it wouldn't stop. It is believed that the anticoagulants that Conley needed for the clot in his chest is what caused the bleeding. There was no specific site of bleeding like last time when the mass ruptured, and it was more of a oozing that was occurring in multiple sites that had recently been operated on. Our surgeon said this is the window of time that they typically see bleeding, particularly in adults that have had liver transplants, and since Conley did not have any bleeding immediately post-op, than its only safe to assume the anticoagulants started the bleed.

Conley's presentation this time around was very different. Instead of being lethargic and weak, he was very uncomfortable, inconsolable and in pain. His tummy had grown significantly in a short period of time since it was filling with blood. They tried everything they could with pain management given his kidney problems and his inability to eliminate medication. This was torture for both Jonathan and I as we literally were forced to watch him struggle for several hours despite dose after dose of pain medication.

The first method they tried was reversing the effects of the anticoagulants by giving him more blood and clotting factors, and waiting to see if the bleeding stopped. They told us we were going to wait 4 hours to see...do you know how long 4 hours is to a parent when they are watching all of this happen. I demanded to talk to a surgeon because the nurses kept telling me "I can't answer that question." And I finally said, "then get me someone who can." Waiting and waiting, being patient and all this crap to see what will happen. It infuriates me, especially when you can't control his pain or comfort level.

Finally, the surgeon came in and realized that the medication to reverse the effects of the anticoagulants were not working, and decided to take him to surgery. Surgery went well as they packed him stomach with gauze to stop the bleeding. They left his tummy exposed with a sterile sponge in place to prevent infection. He will be sedated and intubated until he goes back to surgery on Tuesday (his 1st birthday) to check to bleeding and hopefully close up his tummy.

Our surgeon made it clear that this was definitely a huge setback, although not unexpected. However, he said that Conley is in a much better place than he was right before surgery. Seems to me we are right back at the beginning. He's pumped full of pain medication and back in the ICU with hourly stimulation. They told me not to touch him because he's been sensitive to stimulation. Really? I've told you that for weeks and no one listens. In fact, they do the opposite and tell me they have to touch him. Well, so do I.

Moving forward this creates issues for Conley now that he cannot have the anticoagulants due to risk of bleeding, but he needs them for the clot that's formed in his upper chest. Our surgeon said that's the risk we have to take, and lesser of the two evils at this point.

Back to the grind I go to advocate and protect this pumpkin, now that I know exactly what could happen with sleep deprivation in an infant. I've had many momentarily lapses of being done, and exhausted, and just not wanting to endure this anymore. But then I think of how hard Conley is fighting, and it's only fair to him that I keep fighting as well. Back to the guard post I go.

If we're going to be a frequent flyer, we might as well fly first class

We were finally moved off the ICU tonight, and I've learned that when someone said "today," it usually means "a few days" in hospital time. However, we were finally moved to what they call the "Hemmoc" floor, which is mostly for Hemotology or Oncology patients. Most of these patients are either in the hospital long term or are frequently in and out. They try to make this floor more accommodating for children and families that are here often. It is pretty amazing. Each ro has a mini fridge and full bathroom with a shower. There is a "snack shack" that is stored with all kinds of snacks, breakfast meals, frozen dinners, drinks, coffee, etc. These are donated by a nonprofit called Big Love (I've made a mental note to look them up and get involved). They also have volunteers that serve fresh dinner once a week. While none of us want to be here, ever, or repeatedly, I am amazed at how much easier it is on the parents (and children I imagine) to have some special home like ideas. Kids can run to the fridge and grab snacks, or parents can wander down the hall to grab coffee or have meals from home stored in the room. For someone that's slept many days here, it makes a HUGE difference in the way you approach such a shitty situation. It makes everything less depressing.

Probably the most comforting part of the this floor is that they encourage and promote sleep! For both the children and the parents. What? That's unheard of elsewhere. There is less stimulation, less intruding and minimal "checks." As expected, Conley has had a really hard time sleeping lately because he is constantly being prodded and probed. Every time he falls asleep, someone would come in the room to do something or say something. He's become more hypervigilant and paranoid, watching everyone's moves. Along with his continued withdrawal, which he's having a hard time kicking, doctors believe he's developed what they call "ICU psychosis." You can only imagine what that means. So, we are hopeful that this move will be beneficial for all of us. And I have to give a shout out to our nephrologist who pulled some strings to get us on the unit. Typically, they do not take hemodialysis patients because of the hassle of having to transport them to another unit for dialysis three times a week. But, somehow it worked out and we are here. Very grateful for these small things that can have big impacts on our emotional and mental health. I'm hoping that this is the start of an journey to (better) recovery.