I’ve been all over the place emotionally, these past two months. Even writing today’s blog, my mind is racing in all different directions. I guess I’ll jump in and pick up where I would have left off after my last post. We have spent the last, almost, eight weeks searching for a solution to Kylee’s pain. These last four years have been incredibly challenging for her. Her chronic pain from PKD, just kept growing and taking on a life of it’s own. She has been on daily pain medications for two years now. Every option that came our way, was honestly just a band aide solution. This time around though, when her cysts started to bleed and show calcification’s, I was at a loss. The pain had never been this debilitating before. Each day brought a new challenge. My last blog was incredibly emotional for me. For the first time, I didn’t have any answers and every lead to something that may help turned out to be a dead end. I truly only had blind faith to get me through.
Like I said before, I prayed with every different emotion you could imagine. The anger that I gave to God, didn’t seem to help me get through the day. It sure did feel good to yell at someone though.. Upon reflection, I’m not proud of the things I said. I was just beyond lost. I was mad about things I didn’t even know I was mad about. I found myself in this feeling sorry for myself phase. I’m not strong enough, played in my head over and over. What’s worse than feeling sorry for yourself? When you begin to question the “Why’s” of life. Why my daughter? Why isn’t my dad here? Why have you taken so many things from me? With all of these questions and these disgusting feelings I had of pitying myself. I never stopped praying for help, guidance and strength. I remember saying “God, If you can find any surgery to help her, we will do it. If you can send us any Dr. with the knowledge to improve her quality of life I will take it. Please, Please, Please”.
Then the call came. A surgery that had (to our knowledge) never been done on a child with PKD before. We met with the surgeon. He went over the procedure. He made it clear that this was a guessing game. They assume that Kylee’s pain is coming from these large cysts she has on the left side. The plan was to aspirate the cyst, inject it with dye to make sure it wasn’t draining into her collective system and then re-inject the cyst with alcohol. To burn the cyst from the inside out. Taking any calcification’s along with it. They made no guarantees that this would resolve any of her pain, but we needed to start somewhere and this is where they wanted to start. I was taking all of this in when the Dr. started going over the post op recovery. He told us that Kylee’s pain would get worse for 10-14 days after the surgery. He gave us a time table, what each day would bring. Again, from what they’ve seen in adults. He asked me if I had any questions and said he thought he had room on his schedule for Kylee in four days. I signed a consent form and left.
I went home and searched you tube videos on this surgery. I called my husband and family. I delivered the details with confidence that this was going to work and we were doing the right thing. I called a dear friend of mine who runs the PKD Foundation in Canada. He went over the Dr. who started this surgery on PKD patients. He gave me details about how this Dr. brought the surgery to the Mayo Clinic a few years ago. He also offered to put me in touch with someone who had the procedure before. He sat in an airport, repeating to me everything he knew. He listened to every fear I had. He calmed a thousand fears I had in that moment.
That night, when everyone was asleep the doubt and anger came back again. I remembered the prayers I had said. I sat there laughing like a crazy person… I said to God “I asked you for a hale Mary and this is the crap you give me? Injecting chemicals into my little girl? Putting her through so much more pain, and I’m just supposed to have faith that the Doctor will chose the right cysts to inject? I’m supposed to let my little girl be the pioneer for this surgery in children? Your supposed to be all loving, what in the hell are you doing up there….” I talked to my Dad, I tried to imagine what he would say, what he would do. I’ve again never wanted to hear his voice so badly. Give me a sign that I’m making the right decision. Please, anything. Everything was quiet.
Surgery day came. I was surrounded by my husband and family. Family came in from out of state to watch my other girls. I was nervous about everything. Before the surgery, my pseudo sister and I, we spent time snap chatting with Kylee and laughing. I told Kylee that if she was nervous I could ask to scrub in and do the surgery myself. She wasn’t a fan of that idea. The Doctors agreed that one person could walk back to the operating room with Kylee. I told my stupid jokes. Kylee made fun of me in front of the entire operating room. The medicine she was given to “relax” really worked. She held nothing back. I couldn’t smack her in front of all of those people, so she had that going for her. (Sarcasm, Don’t call any 800 numbers) I rubbed her leg until she fell asleep. Then I was asked to leave… Two hours later, we were told that the surgery went well and now we just had to wait and see. They said in ten days you’ll have an idea if this was successful and if these cysts were the source of a lot or all of her pain.
The drive home after surgery was brutal. I’m not sure how slow my husband drove. He mentioned going back to the hospital or staying at a hotel. I was adamant that he keep driving and just get her home. That evening and for the next 24 hours, Kylee was in so much pain that she couldn’t walk. We carried her back and forth to the bathroom. Laid with her for hours on end. Days 3,4 and 5 weren’t much better. She was able to hug our necks and pull herself out of bed. Then she would hug our necks and walk behind us to the bathroom and back to bed. Days 6 and 7 were a little better. She could now walk from bed to the recliner and back. We had a set back after she completed her steroids, we were told this would happen. I can’t even compare my lack of sleep to anything I’d ever experienced. It was almost like having a new born, I slept when she slept. I never stopped praying though. The first few days were brutal. I questioned every decision we had made. I felt like I personally did this to her. That I had added so much unnecessary pain. I was so mad, all I wanted was a sign that we had made the right choice.
On day 5, my mom called and said she need Chuck’s help fixing something at her house. He came home a few hours later. He said, “you won’t believe this, I found your dads scream mask. It was just sitting in the basement, you’ve never seen it down there?” He went on to say, “It was crazy seeing that mask. It made me think of your dad and how he probably made sure I saw it tonight for a reason.” I’m sure it’s no surprise to anyone that I started crying. That stupid scream mask, which I hate (refer to my Halloween blog), gave me hope. Maybe someone was listening after all…
Day 8, our girl sat up in her recliner for almost six hours! She really started eating again too. That night she slept for almost seven hours without waking up. Holy Hell, we may be making a turn for the better. Day 9, no PRN pain meds were needed. Again she slept six hours. Today is day 10. I’ve never been so relieved to make it through 10 days. Today is the day where we are supposed to start seeing big improvements every day.
Kylee called me and woke me up at 5 this morning. “Is it too early to get up with me? I’m starving!”. I got up with the biggest smile on my face. For almost four weeks before the surgery, she had a problem eating solid foods because she felt full all of the time and would get nauseous even after a couple of bites. Today though, she ate two bowls of cereal. She got herself dressed for no reason at all. I’ve cried on and off all day.
Even in the darkest of days, I will walk with blind faith. I will give all of my worries, fear, anger and gratitude to God and the ones I’ve loved and lost along the way. Today I am forever grateful. Today I see the hope and promise of a better tomorrow for my little girl. Today, I know that the next time this happens we have a plan. For the last four years, we haven’t even had an option to help her other than stronger medications. Today my faith is sealed once again. God didn’t give me a band aide, He gave us a solution. The most beautiful people have been placed in my life to lift me up and dust me off. These people cuddled with my little girl and made her laugh. They never left us alone…
I’ve come out of this remembering to never doubt the process. I’ll try to remember not to dwell on the reasons. This plan was being set up all along. For some reason, our amazing Nephrologist never stopped fighting for answers. She then found the perfect surgeon to help us. For some reason, five years ago we met a stranger who would be become a friend, who would ease my fears over this surgery. For some reason, the most beautiful souls were placed in our lives throughout the years to get us through the days ahead. For some reason, before I was brought into this world, the most perfect parents and brothers were hand picked for me. For some reason I went to a Christmas party all of those years ago and met my now husband. For some reason, he was able to give a woman that was never supposed to be able to have kids, four gorgeous miracles.
The signs were there all along. Looking back, my blind faith has been forever leading me to today. Today I cry tears of joy, because I am the luckiest woman in the world. Even in the worst circumstances there is always something to shine the light through. Never loose your faith, never stop praying and never forget to trust the process.
I’ve added a YouTube video of the surgery Kylee had done. In this video an antibiotic was injected into the cyst. During my research I found that the inject-able is decided based on the Doctors preference and how aggressive they are trying to be. Also in my opinion, this procedure is a game changer for the way chronic pain in PKD can be treated. This procedure may need repeated every one to two years as new cysts become large and create pain. This is an excellent option, since kidney transplant processes cannot be started until you are end stage disease. Because of Kylee’s age and the pain associated with this procedure she was given general anesthetic. My understanding is that in adults, patients are given a local anesthetic and are awake during the procedure. Post op pain and recovery time will be the same in adults and children. This procedure for us was an aggressive approach to a chronic problem. When Kylee needs the procedure done again, we will do it. She has already said it was worth all of the pain. She can’t believe how much better she feels today. She keeps taking the deepest of breaths, because for the first time in a year it doesn’t hurt to take one. As always please email me with any questions.