When I woke up this morning, I was reminded by a friend how much easier it was to have a sick child in the early months. Early on you don’t know the language, you don’t know the words, the equipment, the body systems, and you are essentially blissfully ignorant. I still remember being in the PICU with Von, and initially I was so clueless I wasn’t really that worried. I knew it was serious, but I just figured, ignorantly, they would figure it out and it would all be ok. This was before I understood low flow, high flow, c-pap, bi-pap or ventilator. It was before I learned about ECMO, Pic lines, Main lines, and oxygen saturation levels. Before I became a mom of a medically fragile child, I knew little to nothing about anything related to the medical field. I was a very healthy child. The only surgeries I had were as an adult. I had never broken a bone, needed a stitch, or been hospitalized due to illness. It was easier to be in this world before I knew the high stakes of what being in this world meant.
Doctors in the PICU and NICU are a lot like gamblers. They are trying to sort through a lot of information and figure out if the body is bluffing or has that full house. They also need to keep their eyes straight and mouths from frowning or smiling. When you have a child’s life on the line, they certainly can’t show the emotion that could potentially scare the family. In many respects, most play their hands so close to them, you don’t really know the extent of your child’s illness. However, after 3 years of dealing with Von’s disease, I’m a better poker player now. I can read the subtle lines on their forehead, and I can sense the difference between concern and panic. Even the nurses are good at managing their emotions, and I’ve learned through having home care nurses the difference between something isn’t right and this is an emergency.
Every day I wake up and I wonder what hand Adrenal Insufficiency has dealt us today. When Von wakes up, I walk to his bedroom. In many ways, I’m like most mom’s because I greet my little guy with a kiss. However, this is when things start to get different. I look over his color, check his eyes for bags, and I will gently caress his hair and tummy feeling for any extra heat of a fever. I assess his mood and energy level in whether he’s happy or whiny. All of this information is stored in my brain, and then I can figure out if Adrenal insufficiency is bluffing me with a pair of 2’s or if they have the full house. Most days, I know I’m being bluffed, but I still have to go through all the motions and check all the symptoms. I don’t want to be caught off guard when Adrenal Insufficiency goes all in and bets all the chips.
There are days that Adrenal Insufficiency is stealthy and has it’s sun glasses on. I can’t see if it’s really something serious or if it’s bluffing. I will look at Von, and I can sense something off. He’s whining, his hands are clammy, but if I check his blood sugar it will be well above 80. I can’t tell if it the beginning of a crisis, or if he is simply just off that day. I have to determine in these moments if he needs extra drugs to help his body. Will he be ok with the dose he’s on, or will he need the extra boost to fight whatever is going on inside his body. The disease is so tricky, and such a great gambler that there are days I can’t even see it despite my best efforts. There are days I don’t even see that the full house is in the hands of the disease. Von will suddenly get pale, weak and lethargic. He will need an emergency injection, and in that moment the disease has gone all in, won the hand, and Von loses and goes to the hospital.
Recently I was reminded by his doctor, that no matter how good we treat this we will never win. Adrenal Insufficiency is the master and controller of Von’s body. There is no cure for this disease. No matter how great I can play this game, Adrenal Insufficiency will always have the better hand. Adrenal Insufficiency is the house, and I am the poor poker player that has come to bet on a big win. Every day I come in the hopes that today is the day we beat this disease. Yet at the end of every day, as we put Von to bed safely, we know that tomorrow we need to play again with this disease. We never know when the full house is coming, and when it does, we have to be prepared to get Von to the hospital. Von will never know a life where he won’t need a hospital to survive. His doctors told us expect to need to be in the hospital yearly with this disease. They haven’t let us down with this assessment. We have been either in the ER or admitted to the hospital every year since he was born, and most years it’s multiple times a year.
The doctors said if we can accept that we aren’t ever going to beat this disease, it will be easier to manage the crashes and the days the disease has the full house. I’m a gambler though, and it’s hard for me to ever admit I will lose. I refuse to believe that Adrenal Insufficiency will take it all from us, and I will fight daily with the help of Nurses and Doctors to ensure that Von wins another day against Adrenal Insufficiency. Even if we have only $5 in chips left, and the house has all of our money we will keep on fighting.
I never wanted to be a gambler, and I never wanted to be in this world. It was so much easier when I didn’t understand the stakes of what we were gambling on, and I wish I could have that ignorance back most days. Even though I can’t go back, I will stick my shades on and I won’t let the disease know if I’m scared of panicked because I won’t let the disease win today or ever. Adrenal Insufficiency may be the house, but I’m the mom, and I always win.