Today is one of those days when all I feel like doing is crying. With good, there always comes bad it seems. My heart is breaking for the changes that are happening. Despite Carter's strides and improvements in development, his body is struggling with other changes too. Over the last year, his pain and aggression has continued to progress. He has been admitted three times in the past 2 months and doctors are at a loss. Hearing that they don't know why these things are happening, have no further testing that can be done and treatment options have come to a screeching halt (well besides the things we feared). All of the attempts at relief have failed. Last resort is opiates, muscle relaxers and anxiety medicine. On Sunday, Carter was admitted again to try and figure out what is causing his pain. Palliative care, physical medicine & rehab and general pediatrics put their heads together to analyze his current medications to rule out the side effects and possibilities that one of them was causing the problems. They lowered a medication that could possibly cause it and added Valium around the clock. Because his thrashing and awful pain continued, they tried Lorotab. It worked. The dreaded opiates...they are working. All this tells us is that he has pain (although we still don't know where or why), but this is also bad because opiates slow down the gastrointestinal tract (causing constipation) and for Carter, this could be detrimental for his already poor function. If there is nothing left to do but pain medicine, this could mean cutting Carter's life span in half. We have been faced time and time again with the choice of longevity vs. quality of life; we choose quality of life. A horrible, awful choice to have to make as a parent. Why can't we have both with our sweet son? Today was his follow up appointment with his pediatrician and I cried through the majority of the appointment. Why can't one of the best hospitals in the country figure this out? Why isn't there more we can do? His pediatrician agreed that it was a good idea to travel to the Cleveland Clinic and see what they think. They are the closest Mitochondrial Disease specialists and I feel it's worth a shot. If opiates are all that can be done at this point for pain management and the best doctors agree, it's a choice that I will learn to deal with. But I must know we are making the right decisions. When I look back at the last 4.5 years, I realize how much I have changed. For the first 2 years of Carter's life, I searched the country for a doctor that would tell me that nothing was wrong and Carter would be okay. For the last 2 years, I have searched the country for a doctor who can tell me WHAT is wrong and how to help him be okay. Throughout my journey to find these two different things, I have come to the same ending; no one really knows. I think the combination of all the recent and progressive issues along with upcoming birthdays and holidays, my emotions are in over drive. I want so badly for Carter to enjoy this festive time of year, as well as our family. I am terrified that he won't or that he will be in the hospital a lot. My son just can't get a break. I can only describe my emotions right now as heart broken.
As I measure out Carter's night meds, I find myself overwhelmed by the changes. A year and a half ago, I thought that 5 or 6 meds were a lot. Now he gets 12. Keeping up with the dosages, refills, and authorizations is a full time job in itself. I am not only a mother, I am a nurse, pharmacist, insurance agent and advocate for my son. Surprisingly, I don't cry very many days...I have found ways to stay strong and positive despite our challenges. Today is one of the rare days where I feel weak and defeated. I am overwhelmed. As I am fighting this battle beside my son, I am struggling. I want so bad to know that I am doing the right things and to be able to help him. Doctors say that it's healthy to cry and break down. I suppose it may be...
I know that tomorrow will be better and I will be stronger. No matter how hard it can be, I have to be strong for my little boy who is fighting so hard. In this crazy and tough life, being weak and sad just isn't an option. I am very fortunate to have my dad who offered to come right over and help with the kids so that my husband and I could go out to dinner. I feel bad every saying that I need breaks, but I would be lying if I said I didn't. Just an hour out of the house to eat a peaceful dinner, was just what I needed. Now I am going to administer Carter's night meds, cover my kids in kisses, paint my toenails and drink some hot cocoa before climbing in to bed. These little things are what keep me going
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