{Karlton Bontrager}

This was the day that Louis and I were to fly to California to spend 10 days with Jennifer, Alec, Alexa, and Brian. How quickly those plans changed. How quickly all of our lives changed. I did see Jenn, Alec, & Alexa briefly at LAX between my flights from Boston and to New Zealand. Louis remained behind in Providence, but we talk daily by telephone.

For Karlton, the losses are more than inconveniences and changed plans. He’s had to go through three surgeries, and at least one more to align the vision of both eyes may lie ahead. He’s lost the use of his left side, and he struggles daily to regain that. Most of all, it’s the pain he has had to endure. He has lost the ability to go through a day without experiencing more than mere aches and minor pains. That too, we’re hopeful, will come to an end.

So many of Karlton’s age peers have written cards and email messages of encouragement. Many of them remark about his lust for life, how he lived life to the fullest. In his own way, I suppose he is doing that right now as well.

Yesterday the PTs had Karlton walk twice the distance of the day before. While he was sitting in the “half-way chair”, they put his left foot on a skateboard and asked him to move it. As before, he was not able to pull his foot toward him. But he did move it away from him. This time he pushed it about 10 inches. Was the increased distance a function of increased muscle strength and control? Or was it merely a function of having the wheels of a skateboard under him? We ARE comparing apples and oranges if we try to equate yesterday’s accomplishment with that of the day before. Yet we do remain hopeful.

A services coordinator has called a meeting for today to discuss Karlton’s case. I’m under the impression that doctors will be there as well. I’m really looking forward to the meeting, hoping to get some answers about his prognosis or at least projections about his rehabilitation and his ability to return to the States. Choy-Lang and I need to be informed too about New Zealand’s ACC, the law that covers medical and rehabilitation concerns for accident victims in this country. If we don’t get answers about that today, we are hopeful that we can at least get pointed in the right direction for having our questions answered.

It’s interesting how bonds grow in the hospital. We’ve made some attachments to parents of other patients. One teenager was vacationing with his parents in Queenstown when he was struck by an automobile. He was able to leave intensive care before Karlton did, but then we met up with his parents again when Karlton moved to the High Dependency Unit. And again we ran into them in ISIS when Karlton moved there. Yesterday they returned home to Australia. What a happy day it was for them to be taking their son home. We’re hopeful that it won’t be too long until Karlton follows their son’s progress once again.

He did get to move into that patient’s room. Karlton seems alert enough that we didn’t object to the shift. Earlier in the week we were afraid that a move would be disorienting for him, but he coped with it well yesterday. He’s nearer the nurses station which means the staff is able to observe him closely when we’re away, though it also implies more hallway noise. He hasn’t figured out yet how to work the nurse-call button, so he shouts out when he wants help. In the new room, the nurses should be able to respond more quickly.

When conversations go on in the hallway, Karlton sometimes thinks the comments are directed to him, and he needs to respond. Yesterday, when his sister telephoned, he followed the conversation, hearing only Choy-Lang’s side, but making side comments that were relevant to the topic. This, we are told, is why he continues to be exhausted and why he sleeps so soundly and so much.

In the physio-gym yesterday afternoon, the PTs assisted Karlton in walking from his blue wheelchair to a stationary chair, a distance of about 10 feet. While he rested at his goal, the PTs challenged him to move his left leg. He quickly responded that he couldn’t–and he didn’t. But then they put a smooth board under that foot and a circular cloth between his shoe and the board. The circular cloth was like a rolled up sock so it had some height to it, keeping the sole of his shoe from making contact with the board. Then they asked him to slide his foot backwards. Again he said he couldn’t, and he did not.

Next, the PTs put a ball the size of a volleyball in front of his left toe and told him to move his foot forward. Once again, Karlton said he could not. But we all saw it. His foot moved forward about an inch! They moved his foot and the ball back into position. With great effort and concentration he was able to do it a second time.

There’s no promise that this small leg movement can be increased to eventual walking or kicking. Once again, we’re working on hope. But hope is such a wonderful thing to have right now. We’re very grateful that Karlton has come this far.

The crushing headache continues. Karlton describes it as one of the greatest pains he has ever experienced. The medical staff keep telling us that it is common for brain injury victims to have headaches. But this one has been continuous for two days. They give him codeine, but Karlton does not indicate any relief. We’ll have to have a conference with a physician today if it has not let up.

Choy-Lang and I arrived at ISIS about 11:00a yesterday morning. By then Karlton had been up to eat breakfast and have a shower. The PTs had also been in to get him to stand. As we headed for his room, the staff told us that he was in a deep sleep. But he wasn’t. He was wide awake and alert.

Soon afterwards, the PTs got Karlton up again. They wanted to make adjustments to a wheelchair they’ll be using with him. He tolerated those adjustments so well that they took him to see the physio-gym, the area where they will be working with him.

This time when they put him back to bed Karlton did go right to sleep. And he slept off and on all day long. Yet, in the end, we think that he was more awake and more alert than he has been. His mind was defintely clearer. And he was more argumentative. He wants some drugs to relieve his pain, but the drugs he’s asking for are recreational ones. Some of the staff take it in stride and joke with him. Others take it more seriously and try to make rational explanations.

Despite the increased lucidity, he still thinks we have access to a car and can get him out of ISIS. He wants so much to go to his place, where his things are. If only we’d give him the keys, he’ll take us there. Can’t you just image this as the plot to some Hollywood movie starring someone like Keanu Reeves. A brain injured patient escapes from the rehabilitation center, commandeers a car, and tears off down the road, having to make 3- or 4-hour rest stops periodically because he is unable to sit upright in the car seat for more than an hour at a time. With the assistance of 3 cronies who help him ambulate one step at a time, he breaks into medical clinics and hospitals to acquire the drugs he needs to fight the pain, yet somehow he’s able to elude the authorities. Boggles the mind, doesn’t it?

We’re still battling the cafeteria. Last evening, they sent up 2 separate trays for him, and he devoured nearly everything on them. He makes no effort to lift a spoon or cup, preferring that we feed him bite by bite.

Last night Choy-Lang gave him some strawberry mousse. He said that it was good. That was a breakthrough of its own. The ENT surgeon assured us that the nerves to the olfactory sensors in the right nostril had been sheered in the impact of the accident. Karlton would be fortunate if he had smell in the left nostril. And, of course, taste is largely affected by smell. So we were very pleased to hear that he could taste well enough to say he liked the mousse.

Thank you for the many emails, cards, and wishes for Karlton’s recovery. It gives us much encouragement to know that so many people are behind us.

The headache continues, and Karlton still rates it high on a scale of pain, but by the end of the day we noticed that he’d made many fewer complaints about the pain than on previous days. We can only hope that it is lessening somewhat. The resident said he was hesitant to increase the codeine dosage because it would make Karlton dopey. He assured us, however, that the headache was not caused by swelling of the brain or other organic problems. He told us, too, that the results of the nasal drip test had come in last Friday. They were negative for cerebro-spinal fluid, thank goodness.

Yesterday while he was resting quietly, Karlton called Choy-Lang’s attention to his left hand. He was attempting to drum his fingers, and he was able to get his fingers to make slight, visible movements. He told Choy-Lang that it took a lot of work to move his fingers just that much.

He was so mouthy today. He had an answer to everything. And most of his comments were negative. (Doesn’t that sound like the Karlton you know? We celebrated the return of his humor; perhaps we should celebrate the return of his attitude as well.)

At the same time, he misses us when we are not around. If Choy-Lang leaves the room, he notices her absence and asks me right away where she’s gone. If I tell him she’s gone to the kitchen or laundry room, he starts calling out for her, as if she can hear him from that far away.

Yesterday I didn’t get to the ISIS Center until 1:00p. Choy-Lang said he kept asking and calling out for me. When visitors arrived about 2:00p, he introduced me as his dad who hasn’t been around for several days!

The PTs got Karlton up in his special wheelchair and took him to their gym. Next, they had him sit on a flat surface and support himself on his own as much as he could. He did so for about two or three minutes. When it was time to put him in the wheelchair, he suggested that he walk. And he did so–with assistance, of course.

On the way back to his room, the PTs took Karlton outside for a bit. The light was very bright for him. (Have no fear, the 2:00 guests brought him from Queenstown those awful red, white, and blue sunglasses that he wore as his trademark. He’s more than ready for an outing today.) Then he stayed sitting up in the wheelchair for a good spell. He must have been up for about two hours altogether.

His progress has been less remarkable for the last two days, but he continues to make progress. We’re excited that he is regaining some control over his left side. We’re hopeful that the PTs can guide him along in that area even more.

Karlton suffered with a splitting headache yesterday. The medical staff increased his dosage of pain killers. Yet he did not indicate getting any relief. We wonder if this is new pain or if his body is finally transmitting to his brain some of the pain it has experienced all along.

At one point he said, “It sucks in the middle of the night when I call out ‘Mama-chan, Otoh-san’ and a worker comes.” It’s really good that Choy-Lang and I can be here for him.

Karlton continues to ask to leave, for his car keys, and to go to his room. To give him a sense of his new environment and where his new room is relative to the nurses station and other areas, we put him in a recliner on wheels. Then we took him on a short stroll around the ISIS corridors.

The move to ISIS presents more challenges logistically for us, his parents. I’m writing at the university without having seen him today or having a report on his night. I’m under the impression that he’ll have a full schedule of therapy today. The weekend gave us a chance to get to know the nursing staff and begin to develop relationships with them. It’s comforting to us that they seem to be every bit as caring as the ICU and HDU people he’s had. It just takes us time to become comfortable with them.

Have a great day!

For weeks Karlton lay bare-chested in the hospital bed. At times we had to put a fan on him to cool him down, but never a blanket to warm him up. Last week, however, he began to complain of being cold. He started wearing T-shirts, but he’d ask to have blankets put on him too. Shortly after we’d covered him up, though, he was hot and wanted all covers–even the sheet–off him. Over and over again he took off his TEDS, the knee-high support hose that prevent deep muscle clotting. But then he began asking to have his socks on again. His temperature fluctuations, we are told, are another symptom of the brain injury. The controls are out of control, and only time will get them to settle back to a normal, more consistent pattern.

His signals for toileting are similarly confused. He often asks for the urinal or the bedpan, only to produce nothing. At other times, he has an accident before he’s had time to ask for help. Last night at tea time (supper) he started in again. He needed to go to the loo. First the nurses brought in a bedside commode. He was unsuccessful there, and got back into bed. The next time, they tried a commode on wheels. We put him on and pushed him into the bathroom, positioning him over a toilet. Then we waited. As he sat there, his attention focused on the other side of the bathroom where there is a sink and a mirror. There, in all his glory, he got his first look at himself in the mirror since the accident. He asked, “Is that what I look like?” I assured him it was, tossling his front shock of hair a bit. He said nothing more.

The move to ISIS has increased Karlton’s confusion. He asks repeatedly for us to take him to his room. And he remembers his 1987 Jetta, asking us to give him the keys to it. Sometimes he asks us to tell her something. Who is he thinking of? Which “her” can it be?

But at least he’s able to rest. This weekend is really the first time since his hospitalization that he hasn’t been poked and prodded continually. The only injections he receives are the anticoagulants that he has to take in the stomach. He’s down to taking only 4 or 5 pills orally. And he has no therapies this weekend. He can sleep as much as and for as long as he needs to.

Yesterday’s Otago Daily Times carried a short article about another snowboarder who suffered a head injury at the same ski field where Karlton’s accident occurred. This was the second such snow sports-related incident here in this region since Karlton’s accident three weeks ago. A friend from Queenstown stopped in to visit him yesterday. She brought with her an article that had appeared in the Queenstown newspaper promoting helmets for snow sports. It included a head photo of the Karlton we all remember. It shows him with an enormous grin.

While he was in ICU, his sisters kept encouraging us to speak Spanish to Karlton so he would not lose those brain connections. The response from the medical staff, however, was consistently that he needed rest, not stimulation. We did use a Spanish phrase now and again, but only occasionally. But lately he has been the one to initiate some Spanish use.

A few days ago, while he was sitting up in bed, he began his insistent pleas to have his head lowered. Typically, when he doesn’t get compliance to an outright request, he turns our questions into an opportunity for persuasion. “Do you like the food we’re giving you?” we might ask. To which he responds, “I’d like it better if you’d lower my head.”
“Is the soup too hot?”
“It’d taste better if you put my bed down.”
And then he surprised us with, “Ayúdame, por favor [Help me, please].”

I can’t recall if I said something first in Spanish or the switch came totally from him yesterday. I was complaining about not having success with using a certain calling card to make telephone calls. He said, “Tengo un número para Usted para escribir [I have a number for you to write down].” And then he recited a pattern of numbers in Spanish. So his Spanish connections are still there in the brain after all.

It’s a beautiful, sun-shiny day here in Dunedin. Choy-Lang and I hope to get Karlton up in a wheelchair to take a short stroll around the ISIS halls today. It may give him a better sense of where he is and help relieve his confusion. I hope your skies are clear and sunny today as well.

Last night marked three weeks since Karlton’s accident on Friday, July 5th. What a world of progress he has made since then! At the time, there was little reason to hope that he would survive the incident. First came one neurosurgery, then another one two days later merely to save his life.

A week later, Karlton’s cousin had the website up and running. It was clear by that time that Karlton would live. I was able to report that he was sitting up in a chair, and people across the room were able to observe the head nods that Karlton made to answer our questions. He got a real shampoo that day. He also moved out of ICU into the High Dependency Unit. Keeping his lungs clear was still a major objective.

A week ago he was back in surgery again. This time, thank goodness, it was not for neurosurgery but for repairs to his face and nasal sinus. Soon afterwards he was eating solid foods, and not too much later he was cracking jokes and occasionally being inappropriate.

Yesterday marked another milestone. Karlton moved out of the medical hospital and into the rehabilitation center. Just as I suspected in yesterday’s update, the open slot at ISIS was a factor that outweighed the neurosurgeon’s cautions. He and Choy-Lang were taken there in an ambulance while I was still at the Univeristy sending out the update.

Like Dunedin Public Hospital, the new facility is part of Otago Health Care. Yet the two entities are more like separate systems than a unified one. Despite all the physicians’ notes and nurses records made at the hospital, the staff at ISIS knew altogether too little about Karlton. (Why does this sound so much like systems in the United States??) We had to start from scratch with the dietary department–yes, he’s a vegan; no, he doesn’t eat milk products; yes, he eats eggs; and by the way, he eats fish. The nurses seemed not to know that he needs help moving his left leg and arm. It’s good that we were there to troubleshoot some of his problems. He spent a lot of his time sleeping, but he still wants us to take him to his room.

The first time that Choy-Lang and I visited Karlton at Hamilton, he had shaved his head. It took some adjusting to get used to his loss of that thick, black hair, but we did eventually. I’m thinking more and more that it’s time to go back to that look. The hair on the right half of his head was shaved for surgery, but it’s nearly 1/4 inch long now. In contrast, the right half is bushy, with an unruly lock in the front in the style of Tin-Tin, the French cartoon character. The large C-shaped incision in the scalp has healed and is increasingly hidden by the growing hair. It’ll probably be a comment from an age peer–certainly not one from his parents–that will motive him to alter the ‘do. Here at the university, on the other hand, so many people wear knit ski caps on their heads while indoors. Maybe he’d be amenable to adopting that style.

The C-shaped scar is sensitive to touch. Choy-Lang assiduously applied a jelly to it to help it heal and clear up. But Karlton loudly objected if anyone touched it. He even said something to the neurosurgeon when she had a feel on her rounds one day. He did take my hand and guide my touch yesterday. He also had me feel the lump above his ear. It is a space between the scalp and the cranium where blood has collected. Like so many other things, it will take time to go away.

That about wraps it up for now. The various therapists have the weekend off, and Karlton will welcome the chance to sleep in, I’m sure. We hope you have a restful weekend as well.

On Wednesday (7/24/2002), the doctors decided to have Karlton try breathing on his own. They put a cap on the trach, and he seemed to do pretty well. It was only then that we learned that one evening a few days previously he had pulled out the trach himself. (Sounds ghastly, doesn’t it?) It’d been reinserted, and no one bothered to tell us.

How he hated the trach! The nurses had tied his hands in mitts. They’d put the stiff, unbending material around his elbow, they’d tied his hand to the rail, but still he wanted to get at it. His obsession wasn’t like a conscious thing, just as it hadn’t been for the naso-gastic tube and the stitches. His hand just gravitated to those areas. And he did have a right to feel those things. It’s his face after all. But before long he’d apply pressure, and we were afraid that he’d hurt himself.

And then he did it again. While we were away at lunch, he pulled out the trach a second time! Since he’d been successful breathing on his own earlier in the day, the nurses decided to leave the trach out. (As his neurosurgeon said that evening, Karlton is always a few steps ahead of
them.)

Yesterday was the first day that Karlton did not write to us. Without the trach, his voice was stronger and he had better breath control. But it probably hurt him to talk, given the trauma he’d caused in his throat. On Wednesday, he spoke some of the time and he wrote some of the time. But by Thursday, he was talking only.

Several times in the day Karlton asked us to take something out of his left hand when he had nothing in it. He apparently was experiencing phantom sensations there. Could this be a sign of changes coming on? We certainly hope so.

The PTs noticed that his left leg is getting stronger. As a team, they had him walk yesterday morning, moving his left leg for him. They got him to walk about five steps that time. In the afternoon, he walked even farther to get into a glorified wheelchair. Choy-Lang and I took him down the elevator to the ground floor and outside for a quick stroll around the parking lot.

Karlton doesn’t like to sit up for long. Even when his head is elevated in bed, he soon asks to lie down. But the nurses and PTs keep challenging him to stay up longer. He’s now staying up for an hour at a time. Then he goes into deep sleep when he gets back into bed. Yet he’s beginning to take the initiative in asking to get up to void or to eat.

In the afternoon, the social worker took Choy-Lang and me to tour ISIS, the rehabilitation hospital. It’s quite a nice facility, with wide hallways, big rooms for therapy and activities, and plenty of coffee, tea, and a New Zealand drink called milo for socializing. Families are encouraged to take part in the rehabilitation therapy. As long as Karlton remains in the Post Traumatic Amnesia stage, he will have a private room where he can get lots of rest. Once he moves beyond that stage, he will likely be in a 4-bed ward. Both types of rooms have large, floor-to-ceiling windows that overlook green grass and trees. It seems like an ideal place to be.

Karlton ate lunch at a reasonable pace today. Because he has lost weight, we thought he was starving. We learned later, however, that shoveling in food is a part of the brain injury. It makes it difficult for him to inhibit impulses. (Ergo the inappropriate comments and gesture yesterday.) So his eating more slowly was a good sign in several ways.

The speech therapist gave Karlton another swallowing test. This time she had him eat half a banana. He did so successfully. But he had a coughing spell when he tried to drink water. She decided that he could progress to a soft diet with liquids the thickness of nectar.

The laboratory results on the nasal drip had not come in by the end of the day yesterday. Without a definitive identification of whether it contains cerebro-spinal fluid, Karlton cannot move to ISIS. So our potential Friday moving date has been postponed to Monday or Tuesday. We learned today, however, that there is an opening for a patient at ISIS. That factor may change the way the decision is made.

The sun is shining today, and we hope to take Karlton outside for another walk. I hope you have lots of sunshine in your day as well.

Some of the literature that we’ve been given about traumatic brain injury warns that we should expect inappropriate behavior and vulgarities. It came at us as a surprise, however, when it happened yesterday morning. One of the nurses stayed in the room to chat for a wee bit after helping to lift Karlton higher in bed (NOTE: Here in NZ “bits” come only in “wee” sizes). I mentioned that the day before he had been wanting to go home. She responded by saying something like, “We enjoy having you here with us.” Hearing that, he gave her the finger! We gasped in surprise, but he merely said, “She knew I didn’t mean it.” In the evening when a female friend of his stopped by to visit, he pulled aside the bedsheets and invited her to climb in with him!

Luckily, he’s also evidencing a sense of humor. His left eye continues its almost unblinking stare, and he seldom smiles, so humor seems unexpected, making it all the funnier. When a rugby mate was visiting and I walked into the room, he introduced us. I explained that we had met previously when Karlton was in surgery. His response was, “My condolences to both of you.” The friend added that I’d even been over to his house. Karlton soberly added, “I repeat myself.”

Rhonda is one of the cheeriest nurses on the ward. He named her “Rhonda Honda.” She playfully checked her oxygen saturation rate after she checked his to compare the two. Choy-Lang made a comment about how her saturation rate would be higher if she didn’t engage in certain habits. Karlton picked up on the implied meaning and said, “Too much pot.” Then Rhonda continued with her duties by asking the required questions about time and place. “What’s your name?” she asked. “Pot smoker,” he answered.

So in more and more ways we have our son back. That’s such a blessing! The charge nurse talked to Choy-Lang about the next step: moving to ISIS, the rehabilitation hospital. He told her that the move could take place as early as Friday. Later, the social worked stopped by in to make arrangements to take Choy-Lang and me there on a field trip today.

The move will change our logistics markedly because ISIS is several kilometers away and in a residential area. We may need to take buses to get between there and the town center. Also, restaurants, supermarkets, and the university library won’t be so convenient. But, of course, we’re happy to make those adjustments in support of Karlton.

When I got back from the university yesterday, Karlton was asleep. When he woke up, he opened his eyes. Both eyes. Well, he opened the right one only a wee bit, maybe a quarter of the way. But until then, the right lid had made no response when he opened the left one. And he clearly had been unable to open it at will. But suddenly, that’s changed. During the day it gradually opened more and more until he was opening it about 1/4 of the way. Choy-Lang covered his left eye, and he claimed to be able to see something. This is almost too much to ask for!

Over and over again we have steeled ourselves against hoping for and expecting too much. At some point, we tell ourselves, the progress will slow . . . or maybe even stop. But to date the only hiatus was over the weekend just after Karlton’s third surgery. And now he surges on ahead. We are so grateful for all of you who are supporting us with your prayers, positive thoughts, and energies. You are having a profound effect!