This past week has been really tough. In a way that was debilitating to me as a mom. The struggles are a constant tug-a-war. Carter has good stretches that can last anywhere from two to six months but then have stretches of pain and struggles that can last just as long. We sit on the edges of our seats; our very cores and nerve endings in a constant over drive of fear and anticipation for each of these stretches that will inevitably appear and again disappear. Whether it's weather or growth related, we don't quite know. No one knows. This time, the rough patch started with reflux and vomiting and progressed in to "seizures or dystonia", a halt in eating by mouth and lastly, screams of pain. By week two, when the shaking, breath holding and no eating hit...we decided to call 911 for the first time in Carter's life. We weren't entirely sure if we were indeed seeing seizures or not. But we wanted to make sure he was stable and getting enough oxygen before we decided whether to take him to the children's hospital or not. We gave him a dose of rescue meds and the paramedics arrived quickly, but by luck, Carter's episodes slowed down and he got sleepy so we refused transport. But about 20 minutes after they left, the episodes increased again and we decided to head to the hospital. He was admitted for testing and observation. And for me, as a mom, the toll was being taken. I have felt nauseated and ill since it started. I would feel hungry and try to eat, but would quickly become sick. I thought I had the flu at first, but when two days quickly turned to two weeks, I realized that it must be stress and anxiety. My worry was becoming a physical torture. As I listened to my child cry in pain and frustration, my whole body tense and my stomach in an upheaval, I felt beaten. As he shook with seizures, I felt my own body shaking with worry. Doctors said the EEG was negative for seizures as I watched my child convulse; it makes no sense. I am unconvinced that the tests are correct. I am left frustrated and confused. I fear every day that Carter's body is giving out and that Mito will get the best of him. My husband is the optimistic half in our relationship in regards to Carter's status. He always says that Carter is okay. But this time, he was fearful too. Seeing the worry in his face as we held Carter while he shook, unnerved me to my very soul. If my husband is sensing and feeling the toll, then it must be real...it must be worse.
Carter was discharged from the hospital on Friday but over the weekend, he cried and screamed in pain, couldn't sleep no matter how hard he tried and refused all food by mouth. But life doesn't stop, right?! For a month, we had my nephew's birthday party planned at our house. So I did my very best to clean the house, make queso dip, rice krispie treats and smile as if all in life was fine. I took every desperate measure to comfort Carter; from suppositories to pain meds. We were able to get him comfortable enough to get through most of the party, but he was groggy and restless. Yesterday was much of the same, but Carter was more calm and less fussy. He even napped for a couple hours...I knew this could mean that our night would be rough, but was happy that he was resting. But to my absolute surprise, he slept part of the night and was comfortable and content the other half. For the first night in two weeks, we got a decent nights sleep. Boy, what a good nights sleep can do for the mental state. I feel stronger and less anxious today. I have even seen unprompted smiles and GIGGLES today!!! He still isn't taking food by mouth, but he is comfortable and happy. All the nausea and sore muscles have eased for my body today, as well. The fear is never entirely gone and my inner nurse is never quiet. We are doing bolus feeds through his feeding tube, monitoring him with an cautious eye and hoping with all our might that this rough patch is over. I think I have aged another 10 years in the last two weeks. But as each smile lightens Carter face, I feel the years falling away. I feel my body relax and my stress melt away. Oh how I love this little boy. I marvel at his resilience and strength despite the every day battles. I will take a thousand days of my own nausea and anxiety, just to see more good days and smiles.
And to top off the great day of smiles and relief, Carter's new play area arrived!!! We waited 6 months for this! Palliative care worked VERY hard to get this approved through the Comfort Fund for Special Needs at Mott Children's Hospital! It's wonderful and perfect! Lily is enjoying the ledge and being able to read to her big brother <3