Okay, so the distance from the Big Island to Oahu is relatively short. A fifty minute flight. What made this trip a BIG trip was the anticipation. The hope for healing. The culmination of the work of many people who made sacrifices to get us to this point. The months invested in prayer and research. The years of watching our boy suffer and decline. This was big. Huge actually.
Traveling with a party of nine is big, too. But all went fairly smoothly. We arrived in Oahu two days before our hospital stay. We needed to get there early and get everyone settled in before I would be gone for a few days with DeSean in the hospital. We shopped for food, visited family, explored Ala Moana, and went to the beach.
The night before DeSean was to be admitted, we picnicked with my Uncle and Aunty at the beach in beautiful Kailua. Our picnic came to an abrupt end as my cousin called my Aunty to tell her that a tsunami warning had been issued and everyone was to get to higher ground. We quickly gathered our belongings and loaded our vehicles. As we started to drive away the sirens began to sound. We stopped at the store for more water, just a few minutes from where we were staying in Kapolei. Those few minutes, turned into two hours of being stopped in traffic as we attempted to get back to the place we were staying. The car was filled with questions about “what ifs.” We prayed with our children – for peace and safety for everyone in the islands. I could not help but wonder what this could mean for us. I realized that depending on the severity of the tsunami and water damage, etc. DeSean may not be able to be hospitalized. The Lord gave me peace and we went to bed that night, believing we were safe, that the hospital would be open and functioning and that we would be proceeding with this big life change….starting tomorrow.
The next morning all was well. We headed to the hospital as planned. Checking in at the time requested by the dietitian. As we waited for our name to be called in admitting, I could sense complete peace washing over me. Once we were called, DeSean and I sat Ina tiny cubicle, with all of our stuff, answering questions from hospital staff. After we got through the preliminary name, date of birth and reason for being here, the question came….”ARE YOU SURE YOU ARE SUPPOSED TO BE HERE?” I just smiled. “Yes, I am sure.” After all, we had flown over from the Big Island…this had been planned for over a month. The hospital employee had a quizzical look. She responded, “Maybe you were just supposed to see your doctor? Outpatient visit? There is no record of your son being admitted here today. We have no notes about him coming to stay.” I explained why we were there. The initiation of this diet required a four day hospital stay. She had never heard of the ketogenic diet. I spelled it for her, “k-e-t-o….” I gave her the dietitians name that I had been speaking with. She said, “Let’s call the doctor.” I smiled and thought that was a good idea. I think I had some internal eye-rolling as well.
We waited for his response. I was sent back to the waiting area in admitting. I heard lots of talking on the other side of the wall about what to do. Three or four employees were now involved, someone was calling a supervisor, someone else was on the phone with the neurologists office. Lots of questions, and confusion. They worked hard to remain professional and hide the disorganization. Eventually, we were sent to the ER with DeSean. Per hospital policy, we could not just wait in the waiting room for more than an allotted period of time. A nurse checked us in to ER. She then checked his vitals and explained to me that I would wait in ER as we waited to find out IF a bed was available for him. From an examining room we were led to another waiting room. I sent a message to our dietitian. I wanted her to know we were there and we were waiting.
She came and met us. I was thrilled to meet her, after all this was the woman who would be taking such a big part in my sons healing. She was kind and soft spoken with a big smile. She brought us ice water and we talked for a few minutes. DeSean was fasting. He was hungry and asking for food. I was trying to keep him entertained in any way I could. We waited a couple hours.
After so many times of being on and off again, and a possible tsunami, waiting in the waiting room just seemed typical. I felt the Lord speak to me about not being swayed by the obstacles. That all things would work together for good, that He did have a plan, that DeSean was to be admitted for this special dietary therapy and that we would see results. I knew this to be true in my spirit. So I rested in what I knew. By faith, I believed that God had led us this direction. I believed I could trust Him. I believed this was the best plan for our son.
I kept thinking about how many families could benefit from this type of treatment? How many children are on life-changing, mind-altering drugs, and their families don’t realize there is a dietary therapy that could help them? How many other families out there face similar difficulties in trying to get their doctors to agree and support the idea of dietary therapy? How many families would just walk away because it is too hard to persevere and stand up for what you feel is right in the face of all this opposition? How many families would face these difficulties and say they can’t do it…or think it impossible? Not one step of this journey has been simple or easy, or even smooth. And yet, I had such peace in knowing that God was opening doors and He would see us through.
We were taken to our hospital room. Soon DeSean would receive his first ketogenic meal. A small cup filled with ketogenic egg nog. He was reluctant to try it. But he was hungry from fasting. So he drank it. Well, most of it. Still partially fasting, and starting with this ketogenic food, it all began. This diet would change his life.