We were discharged and able to come home on Friday evening! It has been a rough weekend home sorting out the effects of chemotherapy in combination with other factors, including withdrawal. We ended up back in the ER on Sunday for a continued prescription of Methadone to help with Conley's symptoms. Once things are more settled, I will do a longer update. For now, I am grateful to be at home with boys.
Conley has already won the hearts of all the staff and even other residents on the oncology floor. We had about 24 hours from when we moved upstairs to when we started chemotherapy and he spent the majority of his time out of the room walking around in his car, playing outside, in the playroom or socializing with everyone.
Jonathan and I spent the morning learning more about his chemotherapy schedule in depth, including when he will receive each medication and what to look for once we are discharged. I found myself saying that we are "lucky" frequently, which is somewhat ironic now that I think about it. One of the biggest side effects of chemotherapy is kidney failure, and a large part of inpatient chemotherapy is focused on hydration for the patient before and after chemo. Well, you guessed it. Since we have nonfunctional kidneys and do not need hydration (actually that would be bad for him since he has no way to expel it besides dialysis), that generally works in our favor. That being said, the doctors are convinced that it is highly possible for Conley to all of his chemotherapy treatments on a outpatient basis! They have never done that, but they do not see why we couldn't, especially since we are well versed medical parents by now :) There will likely be many other reasons for hospitalization such as fever, infection and transfusions, so it would be nice to avoid any scheduled ones if possible.
Conley started his chemotherapy yesterday. We haven't seen too many side effects yet, but they say it takes about 48 hours to settle in the body. As I mentioned, he will receive three different medications. They also preventatively give him several antinausea medications. His chemotherapy schedule will be laid out like this: At the beginning of the cycle on Thursdays, he will receive a three hour infusion of Cisplatin (which was dropped down from 6 hours given his lack of renal function - score; another "lucky") and Fridays will require hemodialysis in the morning to remove excess fluid, followed by two different chemotherapy medications (Vincristine and Fluorouracil) given as a slow push medication (i.e. syringe) over minutes. For the next two weeks, he will receive one medication (Vincristine) as a slow push on Friday hopefully as an outpatient. This cycle is done every 3 weeks for 4 cycles. So, 12 weeks total. Got it?! :) In the bigger picture of cancer and chemotherapy, this is a very small time frame (12 weeks), amount of medication and time spent transfusing the medications. But, obviously combined with all his other medical issues, settling on a schedule for all his treatments will be very important since they are all time or day specific. For example, he cannot do chemotherapy before dialysis, or all the medication will be sucked out by the machine. All in all, things seems to be falling into place and we are so thankful for our team of specialists.
This little ahonui is causing problems in the ICU by flirting with the nurses and clapping his hands as people walk by the room. People stop in their tracks and fall in love with him immediately; not good when you have many critical patients! There's even a saying going around the unit where staff report, "the new patient is cute, but is she/he Conley cute?"
Conley has spent the last few days up and out of his crib being held by close friends and family which has allowed him to peek through the windows into the hallway. He is still not able to leave the room because there are so many other illnesses, including RSV, floating around the halls of the ICU, so it is in his best interest to stay in the room. He is getting antsy to be up and active, as we all are. He has been working with physical and occupational therapists as well as daddy and nurse Kyle to regain some strength on his hands and knees and torso area. So far, it is astounding to see him act like nothing ever happened.
We just found out that he will be moving back to the hematology/oncology floor this afternoon in preparation for chemotherapy to start on Thursday. Once moved, he should be able to get out of the room and walking around in his car or stroller once again. We are so thankful and grateful for the opportunity to be transferred off the ICU! Now, this time, let's stay out!
More and more I am realizing that Conley is such a miracle and he has taught us all more than we ever could imagine. His continued strength, resilience and stubborn perseverance has saved his own life more than a handful of times. We are so proud to be his parents as he has done more for others in his short life than most will ever do. Every day is a blessing with him.
Today's blog brings minimal medical updates, but huge emotional relief. Conley continues to do well recovering from his surgeries, on full feeds and regular hemodialysis. He also appears to have passed the test of using the continuous heparin drip as doctors have decided to switch him back to the anticoagulant shot that he had prior to his previous bleeding situation. While everyone is still concerned that he may bleed again, the consensus is that he is far enough past surgery for any impact to occur. But, this is still something that he will be monitored for closely over the weekend.
Jonathan and I spoke with the oncologist at length yesterday to discuss the plan for chemotherapy and how it all works in relation to his hemodialysis. We have learned that we cannot say hemo and chemo in the same sentence because they frequently get misinterpreted :) It seems like the plan at this point will be to start his first cycle of chemotherapy on Thursday of next week, to be followed by hemodialysis Fridayand Sunday. We are becoming educated on the three different medications that will be used for chemotherapy, how they work and what their side effects are. Another large medical binder to add to our collection!
Conley seems to be in good spirits as he has had three amazing days so far, and even slept through the night for the last few nights! Of course, cuddling with his bear that is drowned in essential oils! These have made such a huge impact for both of us during this hospital stay. I'm sure the medication he is on for withdrawal likely helps, but he genuinely appears to be excited and happpy when he has visitors, instead of being anxious and paranoid about anybody that walks through the door, like he was just one week ago. His withdrawal seems much more controlled than last time, and he is slowly being weaned off Methadone and Ativan. Every doctor that comes to visit him is just in awe of his strength and resilience throughout this process and how he has definitely surpassed any expectation in his recovery. Not only does it seem like he is physically doing well, but emotionally and cognitively he appears to be the Conley we all know and love. I hope we can keep it that way!
On a side note, thank you for those that reached out to me personally regarding my last post on religion and prayer. I have had some great conversations with many people, and while I wish it were different circumstances, I love how this could be a way to connect to others and share our journey. So many of you have taught me new ways to think about life and this journey, and I'm very appreciative! I have also earned the Dr. Mom title at the ICU since I know way too much about too many things!
Please continue with the thoughts and prayers for comfort and healing.
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/
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.
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.
