Koan was released from the hospital in early October. We had lived in the NICU for a little over three weeks. He was eating on his own consistently and while he was still having seizures, they were not training in one on top of the other. The future was still very uncertain. We had set up follow up appointments with Dr. Peterson here in Cedar Rapids and scheduled a consultation with the University of Iowa Children’s’ Hospital to see if we could get some answers on what was the cause of Koan’s troubles.
It was great to get home and resume some semblance of a normal life: sleeping in my own bed, eating in my own kitchen, seeing my spouse and children at regular times. But, there were always reminders that things were not quite right. We had to give Koan phenobarbital, the anticonvulsive medication, twice a day. This was tricky. The prescription we had was a red, thick, goopy, liquid. We need to put it in his formula in the morning and in the evening. I never tasted it myself, but I can imagine it didn’t go too well with the formula we were feeding Koan. He would often spit it out or spit it up. I remember constantly being worried that we were under-dosing him. This thought crossed my mind each time we saw a seizure.
The seizures were coming about one every thirty to forty hours. And, of course, these were just the ones we saw. I’m sure he had many at night. But, we would go a day without seeing one, and vainly hope that they were gone. The first month at home, we saw Dr. Peterson weekly. After a couple of weeks, with no luck eradicating the seizures, we had tried increasing Koan’s dose of phenobarbital, Dr. Peterson switch anticonvulsants. The new medication, Dilantin, gave us brief hope. There were a couple of days without seizures, but soon, they came back with the same duration and frequency.
Early on, I had a lot of trouble recognizing a seizure. But, as he got older, it became all too familiar. Koan would always start (and often still does) by letting out a very distinctive yelp/cry. There’s no good way to describe it, but it’s not in his normal vocal pattern. It’s instantly recognizable to both Jeri and me know. This was a red herring a while as early on, all the physicians and neurologists told us that seizures are silent events with no vocalization. But, as we would learn over the years, Koan was rarely “typical.” After he would cry out, he would turn his head to the right, raise an arm over his head and rhythmically nod his head. These episodes were short. Usually, it would be done in less than two minutes. And, he would be back to normal, not any worse for the wear. But, for Jeri and I each one was a devastating disappointment. We were continually adjusting medication. So, there was hope with each adjustment that we had seen the last one.
Almost immediately upon our arrival at home, it became clear that our long time and adored cat, Mikey, was really ill. Jeri had adopted Mikey from our friends the Derrs about a year before we were married. He was big, sleek, and black. After we were married, but before Sydney and Tiber were born, we referred to him as our .3 child. Jeri loved, loved, loved Mikey. He was her cat (or she was his person — hard to know the better way to describe it). If she was upset for any reason, Mike would know. He would seek her out and try to comfort her. They shared a tight bond. In the months before Koan was born, Mikey lost a lot of weight. So, we knew something was not right. But, he was over sixteen years old at that point. As we settled back into our normal routine, we could see he was really ill and in pain. He had probably been that way for a few days, unfortunately, while we were occupied with Koan in the NICU. It was clearly his time. Jeri is so strong. She took Mikey on his final visit to the vet by herself. While we were all very sad, the loss of our beloved Mikey was overshadowed by our concern for Koan. And, in retrospect, that may have been a blessing.
About a week later, we decided to get another cat. I kind of pushed for this. Jeri had about a month of maternity leave left and I thought having a new kitten would ease her bereavement and give everyone in the family a break from the cloud of anxiety we were all feeling about Koan. I hoped Jeri could use the time off to bond with our new cat. Jeri has always had a black cat. So, we set out to find a black kitten. And, as it turned out a local vet near our house had several rescued feral kittens and one was black. We decided to have a look at them.
There were three left: one black and two gray striped tabby kittens. The black kitten seemed to be really shy and timid (we would soon learn this was a ruse), but one of the tabbies was quite bold and friendly. So, against my better judgment, we adopted the bold tabby and the shy black kitten. We named them Rascal (the gray tabby — for the anime raccoon) and Kinnick (in honor of the great Hawkeye football player). We still have them both today. My mom ended up adopting the last gray tabby, so all of these cats ended up in my family. While there are a ton of great Kinnick and Rascal stories, I’ll only relate two.
Jeri has always been the “cat person” in our family. I like cats just fine, but I’m very allergic to them so I don’t interact with them a lot. I had it in my mind that these two cats would provide Jeri with some solace and even joy as she stayed at home with Koan. I suppose what happened next was inevitable. Jeri was so occupied with Koan feeding him, changing him, getting him to appointments, etc… she had little time for the kittens. Sydney and Tiber had all sorts of time to give the cats attention. So, within a few weeks, it became clear that our two older kids had bonded with the new cats. Not only did the two cats not go to Jeri for attention, it seemed like they had some genuine (but unfounded) animosity toward her. So, this was another great ironic life-truth. The one “cat person” in the house was disliked by both of the cats. Over the years, the dislike has blunted a bit. The cats now tolerate her. But, certainly, they don’t love her like Mikey did. Several years later, Jeri tried to fill this feline love void with yet another cat. That didn’t really work either, but that’s another story.
Our new black cat, Kinnick, turned out not to be shy at all. I don’t know what kind of act he was putting on at the vet, but he’s never been timid since then. As he grew up with Koan, he became obsessed with him. I think Kinnick believed that if he acted like Koan, he would get more attention. So, he would sit/sleep in Koan’s high chair. Sleep in his crib. But, the most interesting thing he did was climb into his jumper. I would have believed it if I had not seen him do it. The pictures below are evidence. We did not put in in the jumper. He crawled inside and sat — with his back legs and tail sticking out the bottom. I wish I had the presence of mind to capture this on video.
The new kittens did bring some relief and joy (to some of us), but there were still some difficult times. A couple of weeks after Koan came home, we had a major scare. It was in the middle of the work week, I don’t recall the day. During the evening, Jeri was feeding Koan a bottle of formula. It was about 6:30 PM just after the local news had finished. As she was feeding him, some of the formula must have “gone down the wrong pipe” and Koan began to cough. Then he stopped coughing and went silent. We realized he was not breathing. This was another one of those moments where every second seemed like hours. We sat him up. We did our best to look in his mouth to see if we could see any blockage. He started to turn blue. The change in color was dramatic and very real. There was a feeling of unreality and Deja-Vu. I could not believe he had stopped breathing again. This was so much worse than when we were in the hospital. There was no one here to help.
After a few seconds, Jeri called 911. We began a panicky exchange with the operator. Jeri had just finished describing his age and condition when Koan suddenly gasped and began to breathe again. The bubble of formula or whatever it was had cleared. However, the fire rescue and police were already on the way. A couple minutes later, the fire truck stopped in front of our house with lights blazing. A couple of paramedics came in and give Koan a quick once over. We explained what happened. And, they could tell how shaken we were. One of the guys, in an attempt at compassion said, “Everything looks fine now. But, I’m guessing you won’t sleep well unless we take him to the hospital to be looked at by a doctor.” Without any hesitation, Jeri and I both said, “NO!” It felt like we had just gotten home and no one wanted to go back. So, I’m sure the intensity of our response surprised the EMT.
As October turned into November, we were still seeing seizures. And, unfortunately, the frequency and duration were both increasing. For whatever reason, it appeared Koan’s condition was getting worse. We had tried various increasing doses of phenobarbital, and while it would seem to work for a day or two, inevitably he would have a seizure later. We then switched to Dilantin with the same type of results. Start at a low dose and increase to the maximum for his age/weight with diminishing results. We then tried a third drug. Same process, same result. There were not a lot of medication options left for someone Koan’s age. We had been visiting Dr. Peterson, our neurologist, weekly, and with each trip and lack of results the appoints became more and more grim. It felt like no one knew what to do. As an off the wall idea, Dr. Peterson had suggested one very unlikely possibility was a rare condition that causes vitamin B deficiency. The treatment was simple — give Koan a compounded, pharmaceutical mixture of vitamin B every day. These compounds were not inexpensive and since they were not technically a drug/medication they were not covered by our insurance plan. So, given the cost and the very low probability that Koan had this disorder, we elected not to try this.
Around the second week in November, again on a weekday in the early evening, Koan had a severe seizure. This one was unlike anything we had seen before. The symptoms were kind of the same, but the duration was a lot longer. Typically, he came out of his seizure state in under five minutes. Our seizure protocol (even to this day) is to start a stopwatch. This particular seizure just would not stop. At fifteen minutes, we called 911. This time everyone agreed that he needed to get to a hospital. After talking with the dispatcher, we determined that since the seizure was not violent that we could get him to the hospital faster if we transported him ourselves. So, we drove him to St. Lukes and he was admitted.
The treatment team gave him a sedative to ease him out of the seizure and stabilize him. Jeri stayed with him that night, and I went home to care for Sydney and Tiber. This may have been the lowest point of my life. We had no idea what was going on or what to expect. Koan’s condition seemed to be getting worse and worse. There was no end in sight– no bottom. I had experienced emotional and physical exhaustion before. But, this was different. I would describe myself as a pragmatic optimist. I’m not blindly optimistic in all situations. But, given enough time I’ll find the silver lining in any situation. This time I had nothing. That was a long, black night.
The next day, Koan had another long seizure. Again, they needed to give him drugs to ease the duration. After that Jeri and I had a consultation with Dr. Peterson. There were no new ideas. So, as a “Hail Mary” we decided to start giving him the vitamin B compound in addition to the high dose of anticonvulsant. We figured it would not hurt him any and all we would be out is some money. The seizure on November 8th, 2007 was the last one we would see for over six years.
The way I’ve written this makes it seem like the vitamin B was the Holy Grail solution. And, while it seemed like it at the time, it was not. To this day no one of know why the seizures suddenly stopped. Dr. Peterson was skeptical from the start. Koan didn’t fit the profile of someone with this type of condition. After a few months, we weaned him off the anticonvulsant and off of the vitamin B compound. It’s almost like God or the Universe suddenly decided, “Let ‘em up. They’ve had enough…” The seizures stayed away for years. Anyone who follows me on Facebook knows that Koan still occasionally does have a seizure — about once every three or four months and mostly at night. We don’t believe, and neither do the pediatric neurology team at UIHC, that it’s worth the effort or side effects to put him on an anticonvulsant again. We are just keeping our fingers crossed they don’t increase in frequency again.
These were the last of our close call, emergency health scares with Koan. Let’s hope that continues. As we went into 2008, I was still hopeful and optimistic that all of these events were just bumps in the road. I thought and believed that Koan would take off and hit all of his development milestones — just like his brother and sister — once we got the seizures behind us. Unfortunately, that was not the case. And, that is the next chapter in Koan’s story.