The week of September 13^th 1993 will always stick in my mind as the week I lost Christopher.

Christopher started preschool that Monday. It was an afternoon schedule and I was concerned about him being overtired, because he still took afternoon naps. I was working at the daycare and we walked over there early so he could ride the van to headstart. I knew he would come back to daycare tired, but he would adjust. He played outside afterwards because the class was at recess when he returned. He came back the first day and proudly announced to me that he tried a hamburger and he liked it. I had never been able to convince him to try them before. He was so picky. He was playing outside and he fell and hit his head. I was right there looking, but not at him. I didn’t see if he fell from the top of the slide or just from standing underneath. He’d been at the top minutes before, and it was a pretty tall slide.  When he hit, it was hard enough to leave the imprint of the sand in his forehead. I took him inside and he took a long nap afterwards. The next day, he fell off the slide while sliding down, and then took another long nap. Thursday of that week he fell off a swing at home onto the grass. While it didn’t seem he could fall very hard, he complained of a headache when we tried to walk to daycare. We ended up having to ask a neighbor to drive us the one mile, because he couldn’t walk it. I was concerned about his headache, and kept Christopher back from school that day. He took a 3 ½ hour nap in the baby room instead. The next day he didn’t have school. I expected he’d be feeling better by then and was surprised when he complained even worse of a headache. He couldn’t walk 3 steps without crying about the pain. We had to find another ride to the daycare and he spent another long nap in the baby room.

I still had no clue how serious this could be, and by Saturday I expected Christopher to feel better and we headed off to his uncle Kamron’s football game that his dad was coaching. At the game, he was still tired and didn’t have any interest in the game, or anything else. Later that afternoon he developed a fever and started vomiting. I relaxed a little because I figured he’d simply been coming down with the flu, and I thought that explained why he was still so tired and headachy. Sunday morning, however, he still didn’t feel better and his fever was quite high. When I came home from church he was moaning every time he moved, and would say “Mom, my back hurts.” After another hour he was reduced to just saying, “Mom.”

I would stop my reading and ask him, “What?” He didn’t answer and after the third time, in frustration I said, “Don’t call me unless you are going to say something like ‘My head hurts.’ Or ‘My back hurts.’” To my deep shame, I didn’t listen when it mattered most. He never did call out again. He continued to moan every time he moved and after we had given him Tylenol and his fever rose instead of breaking, we took him to the emergency room.

The doctor looked him over and then lifted his head onto his chest. He told us it might be meningitis and they needed to tap his spine to be sure. If the fluid they drew was milky in appearance, it was meningitis. At this point I didn’t know what meningitis was, although I’d heard the word before.The fluid was milky. His first night at the hospital was touch and go, although the nurses didn’t tell me that until later. My last words to that little boy who disappeared after that night were words of scolding, when I should have been taking better care of him.

We were told Christopher would be in for ten days. I felt faint at the news and had to sit down. I had never imagined needing to stay a whole ten days in the hospital! It turned out that the predicted ten day series of antibiotics—that’s what a normal treatment for bacterial meningitis is, assuming the child has a normal case—was a bit too optimistic. We could have benefitted greatly by bringing Christopher in a day sooner, had we known his symptoms of fever and lethargy were serious. Christopher’s immune system was on its last legs trying to fight an infection that proved to be a drug-resistant strain previously unseen within the U.S. I’d sit by his bed in the ICU unit and watch his blood oxygen levels, wishing he could wake up and start life again. We watched other children come in, go out, or linger—like us. Some were there briefly, as intensive medical care resolved their needs quickly. Some stayed longer, like we did. And there was one who was not going home, as the hospital was his home, because what he had was terminal and he was in his last days. It gave me a lot to think about. Three weeks and three different series of antibiotics later Christopher was moved to the rehab unit because his infection was finally being eradicated.

At the time I was simply waiting.That first night Christopher received a priesthood blessing promising a slow recovery. The next day they had to increase Christopher’s IVs to give him more medication. They induced a coma to help him heal and they given him a blood transfusion, too. His white blood cell count was badly depleted, and his immune system was almost spent. They suspected pressure on his brain as well, but were hesitant to drill for fear of further infection. They finally decided to go in, and found his brain was under extreme pressure, so they put in an outside drain. A few days later they discovered he wasn’t improving with his current series of antibiotics so they changed to 3 new kinds. His head wasn’t draining on both sides so a second drain was required.

Christopher had been lying down for several days, so he developed fluid in his chest cavity and they had to go in and drain that off, too. By this time they were pretty certain there was brain damage. His pediatrician, Dr Havlik, warned us that we would not take the same Christopher home that we had known before. At the time, I had no idea what that meant. 

Christopher was on a ventilator through all this and it was a triumph the day he was taken off it. I had not fully understood that he’d been in an induced coma and kept thinking he would wake up soon. He did become more awake. I expected him to start talking at that time, but he didn’t. He was extremely weak, and couldn’t be up or off his bed much because of the drains, that had to be kept perfectly level with his head. After he was taken off the ventilator, Christopher was finally ready to leave the ICU and transfer to rehabilitation. This was mid October and he’d been there for three weeks.

We went over to rehab and saw other kids in various stages of their own progression. Where they were and what they could do stood as a beacon of hope while I waited for Christopher to make the same steps. After the doctors pulled his drains, they decided he needed shunts and he had surgery on Oct 11^th for a double subdural shunt insertion. The following couple of weeks, Christopher was in a state of constant agitation. I will never forget the day Christopher’s two favorite neighborhood sitters came to visit him in the hospital. It had been on one of his bad days. The infection had cleared, but he lay in bed restlessly, shifting around a lot and making a noise. He was in pain and these sweet young girls were clearly were not ready for what they found. They hugged each other and sobbed. I felt terrible for them. This was followed by three more shunt surgeries, revising the existing shunts and placing a ventricular shunt. Once they got his pressure down, he was able to relax. He then lay there quietly for days. The staff began therapy with him attempting to get him to move, eat and any other actions at all, but he was nonresponsive. Finally discouraged by his lack of progress, the staff suggested sending Christopher home for a while. I was trained on how to change the diaper of a larger than baby person, and also on how to place his n-g tube and feed him, since he didn’t eat or respond to food in his mouth. A vendor came in and sold us a wheelchair. We chose blue for the frame and had every support possible. The chair reclined and he had supports for his head and all up his sides and a butterfly harness across his chest. He was released from the hospital Dec 1^st, 1993.
In spite of this I was optimistic. I still expected him to wake up one day, back to his old self. I realized he wouldn’t be back to preschool that year, but surely next year, by kindergarten, he would be better. Kary built a rail for his bed and we placed boards under the legs at the head of the bed to tilt it slightly to make it more like the hospital bed he’s been using.

Some neighbors came over and helped Kary construct a wheelchair ramp for Christopher’s chair so we can get it in and out of the house. It doesn’t have rails, but it has a carpet so it isn’t slippery. I am so thankful for the help the neighbors and our ward have given us. They have taken turns watching Toni, giving me rides to the hospital, and now they have helped with the ramp. 

The home therapy began. A couple of therapists came by each week to work with him. I watched so I could copy their actions when they weren’t there. During the third week I asked the PT why she brushed his arms and legs; what was it for? She told me it could help his brain rediscover and reconnect with his extremities, and she taught me to do what she was doing. During this period of time the only emotion Christopher showed was to cry if we accidentally hurt him. Otherwise he placidly stared into space, occasionally focusing on something with his eyes, but only momentarily.

I began brushing Christopher’s arms, legs and torso, as well as gently compressing his joints twice a day. I stretched unused muscles to keep them flexible for later use.  I ran his feedings and cleaned up several times a day when he didn’t keep his formula down. Then I repositioned his Ng tube back into his stomach, slowed down the rate of his feeding, and started his formula again. I placed casts and braces on his hands and feet to ensure they didn’t begin to tighten and deform. And I waited.

About three weeks later, during church, something happened. Christopher started lifting his head out of the headrest in his wheelchair and holding it up for a couple of seconds at a time. A neighbor noticed and gave us an encouraging smile. His next doctor checkup was a little different. While he was still doing so little, he was a little more alert, and six weeks after I began brushing him, the doctor scheduled him to come back in for more inpatient therapy.

This was it. What I’d been waiting for. It began the second or third day as I walked toward his hospital room and from the hall I heard Christopher saying, “A A A A A B B B B B C C C C C D D D D E E E,” and then start over again. The nursing staff got him to endure his feedings better so he could take more than an ounce or two of formula over the course of an hour without vomiting it back up again. They began sitting his chair more upright and he began to build strength in his torso so he might sit up someday. Then he began to move his hands and start grabbing and holding objects.

Out insurance covered only so many days of inpatient therapy. This meant that in spite of his continued progress, Christopher had to be released a little short of three months after he went back in. The hospital staff was fantastic. They developed a program where Christopher could come in five days a week and receive the same amount of therapy he’d been receiving, but without the inpatient costs of a room and nursing services. They named this new program Day Treatment and succeeded in getting it approved by the insurance company. This allowed Christopher to continue to progress at an awesome rate. When he transitioned to Day Treatment Christopher was sitting with minimal support, scooting and rolling himself around on the floor a bit to reach toys he wanted and babbling words and phrases he heard. During the summer, as he was weaned back to regular outpatient therapy, he was crawling and transitioning to and from a sitting position at will. He had surpassed the original expectations of the hospital staff after his initial lack of progress. And we found ourselves on an unexpected journey.