{Karlton Bontrager}

Karlton can walk! I saw it with my own eyes! He can walk!

Monday afternoon only two PTs worked with Karlton in therapy. They stood on each side of him, helping him maintain balance by holding onto a belt around his middle. He lifted his pelvis so his left leg could swing forward. The L-shaped brace in his shoe and tied around his leg kept his ankle flexed so that he did not trip over his foot. And then he leaned forward and supported his weight with the left leg while he stepped forward with the right.

Like the arm-raising ‘parlour trick,’ Karlton downplays this new advance as more smoke and mirrors than true miracle. He’s not actually walking, he says, he’s just lifting his pelvis. But the PTs indicate that his leg muscles are indeed doing more, and I think I can see his knee bend each time he raises his leg. In the therapy gym he must have walked at least 10 yards, rested, and walked back again with a PT on each arm.

When he walked, Karlton had difficulty placing the left foot. Sometimes it landed in front of his right foot. Other times it fell with the toes pointed too far out. The PTs guided him verbally, and he made the adjustments they suggested.

Meanwhile, email is becoming ever more important to him. Besides having only one hand for the keyboard and the mouse, Karlton has difficulty reading the email messages he receives. He doesn’t track well from the end of one line to the beginning of the next. At the moment, he has to settle for having messages read to him and writing on paper for later transcription. And write he does. Monday when I arrived at ISIS, he had already written two letters to be sent out. By the end of the day, he had written another one, and he dictated a fourth. I have difficulty reading his writing. Just as when he was in ICU, his writing is most legible at the top of the page; it becomes smaller and more crowded at the bottom. When he flips the page in the clipboard, he continues to write but sometimes at different angles. Later, when I go back over with him what he has put down, even he can’t quite figure it all out. So we do the best we can.

What a day this has been! Can we ever thank you too much or too often for your prayers and for the positive energies you send our way? We are so grateful.

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Two in a row. And then he was back to zero again. These PTA scores are becoming an obsession for all of us. Throughout the day Karlton rehearses the names of the three pictures he is supposed to remember from one day to the next. We’ve even tried to help him by coming up with simple mnemonic devices. So on Saturday morning when he was asked to recall the three pictures, he rattled them off with confidence and without hesitation. But he recited the three from the previous day, not the ones he was to have learned overnight. Again he was back to beginning the sequence of three days with perfect scores.

My training in error analysis tells me that there is important information here. Why did he make the mistake? In this case, it was probably his inability to inhibit the first response that came to mind. Or perhaps it was unwillingness to take the time to examine the response for correctness. In either case, we have encouraged Karlton to take his time in answering.

It is puzzling, too, why he needs so many prompts for knowing what day of the week it is. Could it be that his ability to read a month calendar will emerge gradually in somewhat the same way that reading the wall clock did? At the moment, he needs to have someone cross off the previous day’s date or at least tell him that it is a new day. Seeing daylight follow darkness and eating breakfast are not yet sufficient cues for understanding that the calendar day and date have changed.

On his last day at Dunedin Public Hospital, Karlton gave us a peek into his thought processes. He was uncertain of the time of day, but he reasoned aloud that he had eaten breakfast and that he had taken a shower. Moreover, the clock hands pointed to 11:30. He guessed that it was morning. (Note that he started with mealtimes but did not continue in that direction to focus on the time between breakfast and lunch. Instead, he took diversions to time-of-day activities and then to clock time.)

In conclusion, perhaps we are placing too much emphasis on the PTA questions. We are indeed eager for Karlton to move on, and he is clearly in need of much less sleep, remaining awake and alert for ever longer periods of time. He is conversational, clever, and witty (though many of his jokes are what I call second grade humor). Yet his mind is not functioning fully as before. He continues to need many supports.

Last Friday was Karlton’s second consecutive day to earn PTA scores of 12 out of 12. He mentioned to the occupational therapist who has questioning him that he’d like to get onto the Internet to check his e-mail. Lo and behold, she gave him permission to do so!

On the way back from the physiotherapy gym that day, the PTs wheeled Karlton into the computer room. It was afternoon, and he was tired from the exertions of having to walk. Soon afterwards, the nurses came to flush the PICC line and take a blood sample. Moreover, he was frustrated by the slowness of the computer link. Thus, that milestone was not the breakthrough that it might have been.

He returned on Sunday and had greater success. Choy-Lang and I showed him his website. He was interested in his photos on display, particularly the panorama of Queenstown and the sheep-in-the-fog shot. He does not like being able to use only his right hand for typing, and the mouse is still difficult to control, so he dictated a message to a Queenstown friend while I typed it for him. When I left him last night, he was writing on paper another message that he wants to send out via email.

Gradually, the world is opening up to Karlton again. This is such an exciting time. It’s Monday morning, and the PTs will give him a good workout today, no doubt. He’ll be tired this evening, but what a good feeling of tiredness it will be!

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I’ve mentioned before that time has been amorphous for Karlton. He gets impatient if he has to wait 5 minutes, thinking it has taken hours instead. I believe the problem was that he was not able to read the face of an analog clock. The night I spent with him, I kept track of the time it took the painkillers to work. He was totally dependent on my time keeping. On Thursday, however, I noticed that Karlton looked at the wall clock and read the time easily. The next day, he glanced at the clock and read it with no effort at all. In fact, time played an important part of his thinking. He seemed to wonder how it could be that he felt rested after having slept only from 7:30a to 9:15a. How could he miss a night’s sleep and feel refreshed after only about two hours of rest?

He wonders about other things too. On Saturday morning, Choy-Lang and I had a quiet time with him between breakfast and shower. He mentioned that he hadn’t been able to figure out why he came to New Zealand. That gave us the opportunity to explain the OMBAC rugby connection–how the New Zealanders on that team in San Diego, CA had encouraged Karlton to come to this country to play rugby. Carrying the history forward meant explaining that we ourselves had come to New Zealand to be with him because of his accident. His “thank you” felt so good.

The ISIS resident gave Karlton a check-up on Friday. We learned that Karlton has feeling in both the right and left limbs, but if both hands or both legs are stimulated simultaneously, he is aware only of the sensation on the right side. In another set of investigations, Karlton demonstrated the ability to tense his left thigh muscles. The PTs have given us hints of this, noting the muscle tensing when he walks. But this was our first time to witness it.

One of the ICU nurses has a sister who is a nun of the order Little Sisters of the Poor. The mission of the Little Sisters is to work with the elderly poor. But they have shown a keen interest in the two young American men at Dunedin Hospital who recently had snow sports accidents—Karlton and Kevin Ormbsy (for more information about Kevin, see http://www.webgatordesign.com/kevin/). On Saturday afternoon the nuns invited Kevin’s parents and us for a visit to see their hospital, retirement home, and chapel. Then we had tea together. They treated us like celebrities. They knew us by name, having prayed for us for so long, and they wanted to see pictures of our sons and of the rest of the family members. How good it was to meet some of the many people who are praying so fervently.

On our return to the hospital, we witnessed another miracle. Karlton is able to move his left arm in a new way. He tenses his left biceps and pulls the forearm up off the pillow dramatically until his hand is pointing straight up. Wow!

The summer holidays are coming to a rapid end, and I need to think about employment once more. I plan to return to the United States on Friday, August 23rd. Choy-Lang intends to stay on with Karlton through the month of September. Perhaps other family members can come to New Zealand if Karlton needs to stay longer. By then, on the other hand, he may feel independent enough to stay on alone. In any case, we think at the moment that ISIS is where Karlton needs to be.

Thanks to all of you for your continued prayers and support. Special thanks this week go to Alice, Helen, Nina & Sam, Maree, and Sister Erin and the Little Sisters of the Poor.

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Thursday was homecoming day. Yes, Karlton did get to go back to ISIS, the rehabilitation center. Ever so many people came round to welcome him back. More encouraging for his parents were their comments about his appearance. He lost a lot of ground in his 10 days back at the hospital, but the ISIS staff’s comments confirm our impression that he is now stronger than ever.

Karlton continues to have a voracious appetite. Given the past snafus with the kitchen, I was afraid that a noontime arrival at ISIS would mean having to scrounge for something to eat. Moreover, two patients would be traveling in the ambulance, making it unlikely that I would be able to hitch a ride. So about 11:00a I headed downtown to get something for him to eat. This time his request was from a Japanese restaurant, not McDonald’s. I missed one bus, and by the time I got to ISIS at 1:15, he had stuffed himself on other things. He ate some nigiri, the lunch I had bought for Choy-Lang, but only a wee bit of the teriyaki salmon he’d requested.

Karlton is off all IV fluids now except for his dosage of antibiotics. Getting enough fluids into him has become a problem. He continues to shun water, formerly his favorite drink. He is so afraid of increasing head pain from having to cough that he allows himself only small sips at a time, mostly of fruit juice or soy milk. He does not take nearly enough small sips to keep his body hydrated.

Many of you have reflected in your e-mails and cards about what a fighter Karlton is. To date, we’ve seen that more in his body’s response to the accident and recent infection than in his mental response to the challenges before him. In fact, he rather enjoys being pampered. When his meal tray arrives, he sits patiently, content to have us feed him. During his first stay in ISIS, he once made an inappropriate comment to a young, female nurse. She countered with, “Karlton, how would you act if I were your mother?” Immediately he grimaced with pain and called out, “Oh, my head hurts. My head hurts.”

Another time Choy-Lang and I were talking with someone in the hallway while he chatted with friends. One of his visitors approached me and relayed Karlton’s request, “His name is Terry. If you tell him that his son needs him, he’ll be here in a heartbeat.”

Thus, Karlton’s rehabilitation begins all over again. A PT told us last night that they would start working with him today, Friday. We think he’s ready. Yesterday he sat up in a chair both before and after the ambulance ride and during lunch. He was also in a sitting up position during the entire ambulance trip to ISIS. And his PTA score for the day was 12 out of 12. Yes, he is ready.

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Wednesday’s big event was the insertion of a PICC line. Was it a response to the stand-off of Sunday night? Or does it just make medical sense not to keep jabbing a patient each time blood work is needed or an IV must be administered? No one is giving us any answers, but someone made the decision to give Karlton a Peripherally Inserted Central Catheter (PICC). We liked the idea right away. The new catheter enters the inside of his right arm just above the elbow and lies in a vein that goes up the arm and into the chest cavity. It ends near the heart. PICC lines can remain in the body for as long as a month and they do not require the maintenance of vein lines. In addition to administering medications and IV fluids through the PICC line, we understand that blood can be withdrawn through it as well. What’s more, Karlton is encouraged to move his arm while it is in place.

The procedure took place in radiology. Karlton’s eyes continue to be light sensitive, and the staff were sensitive to that. They kept the lights dimmed during preparations, and we covered up his eyes during the procedure. Once the lead had entered his chest cavity, the radiologists used X-ray video equipment to monitor their progress. At one point the line veered upwards toward the jugular vein. That was the exact opposite of the direction they wanted it to take. They inserted a bent wire to make the line curve downwards, and soon it was in place. In dictating notes summarizing the procedure, the doctor described the experience as “routine.” The reward for Karlton was getting rid of the vein line cut into the back of his left hand.

The PTA (Post-Traumatic Amnesia) questions are getting to be a nuisance. Karlton’s mind seems so clear to us. Yet he keeps getting tripped up on those silly questions, failing to earn a perfect score. Early Wednesday morning he was awakened from a vivid dream and asked where he was. “China,” was his answer. That’s where the dream had taken place. Then the PT arrived after breakfast. No one had bothered to change the calendar on his wall, so he gave the wrong day and date. The day previously, she asked her questions at 11:52a. He identified the time of day as afternoon and was scored incorrect because of 8 minutes! Maybe it’s time for pre-test reviews each morning.

The plan for Thursday is to take Karlton back to the ISIS Rehabilitation Center. Things in the hospital seem to happen slowly and change quickly, so we’re holding our breath. It will be good to shift our focus from a medical one to a rehabilitative one. And we’re almost there.

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Tuesday was another good day. Karlton sat up for most of the day. And his appetite is coming back in full force. During lunch he mentioned that he’d like to eat French fries. Not wanting him to eat the fat, greasy hospital version, I headed off to the nearby McDonald’s. Choy-Lang and I hadn’t eaten yet, so I ordered Filet o’ Fish sandwiches for us (one for her; two for me) in addition to a medium sized order of saltless fries. By the time I got back to the hospital, Karlton was chowing down on a special order of spaghetti that the kitchen had sent up. He attacked the fries eagerly. Then he wanted a sandwich too. He ate the fish patty, the cheese, the tartar sauce, and the bottom half of the bun. He claimed that this was the first junk food he had eaten in two years!

In the afternoon, he had an eye appointment. But first the PTs wanted him to walk. Karlton walked across the length of his room and through the anteroom to a rolling chair. Then, sitting erect, he was whisked along the hallways and down the elevator to the Eye Department.

Karlton blew us away with his ability to see using his right eye. I didn’t get the exact numbers, but he read very near the line for 20/20 vision, if not that line itself. The neurosurgeon had predicted that he’d be fortunate to be able to detect light from that eye, and we had evidence that he could see well! He is still sensitive to light, so a more thorough examination will have to follow. Yet the eye looks good, according to the doctor. The optic nerve isn’t as pink as a healthy one usually is. That indicates nerve damange. The extent of the damange will have to be explored later. But we are so grateful that he can see and see well!

Once again, prayers have been answered. Karlton’s vision is nothing short of a miracle. Thank you all so much for your constant concern and support.

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The proverbial “calm before the storm” overlooks the fact that sometimes calm follows a storm. Monday was that kind of calm. Outside the window, rain poured down. But inside Karlton’s room, all was much better.

Dozing in the chair next to his bed, I woke up to Karlton’s telling me that he wanted to get up, put his shoes on, and run away from this pain. I reminded him that he needed three people to help him walk, so we weren’t likely to run, but he was not dissuaded. I could see the breakfast cart parked just outside his door, so I decided to get him up and into a chair. Choy-Lang arrived then, so together he got his shoes on him and stood Karlton up. We got him to take a few steps forward. Then we had him turn. Next, he had him step backwards to approach the chair. “You’re taking me the wrong way!” he complained. How badly he wants to leave.

He ate a good breakfast. And he went for a shower. Clippings from yesterday’s haircut had peppered the pillows and sheets he had lain on. It was good to make a clean start.

Friends dropped by in the early afternoon, including a flat mate from Queenstown. Karlton was awake and alert, making cogent conversation with them. The Queenstown contingent has been helping us settle Karlton’s affairs there, closing his flat and retrieving his clothing and snowboarding equipment from the police and the hospital there.

The collection bag and the connecting tubing from the shunt remained empty all day. Nevertheless, the infamous bubble on the side of Karlton’s head has not reappeared. My take on this is that the CSF leak has repaired itself. No longer does it escape into the area outside Karlton’s skull. The medical staff’s efforts to flush the tubing and then withdraw CSF were playing with the pressure in that area. I’m guessing that the new pain that he experienced around his ear was the result of negative pressure, that is, the vacuum created by trying to withdraw CSF. No one has given us an official version or confirmed that explanation, but the neurosurgeon did order the shunt removed. Lying on his stomach, Karlton asked the nurse to be gentle and take it out quickly. But the shunt was already out. He hadn’t even felt its removal. Now he is able to lie comfortably on his back again.

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Note: Monday was a much better day. Details will be posted tomorrow. The following is an account of Sunday in New Zealand.

Sunday started out so well. There was no warning that everything was going to go berserk. Karlton sat up for a long time in the morning, taking a shower and washing his hair. He ate all his lunch, the best he has eaten since returning to hospital. And he got a haircut. A worker at ISIS came to the hospital and evened out the two halves of Karlton’s ‘do’.

From then on, the day became surreal. An anesthetist came to look at the shunt and its connections. It was not draining into the bag. Moreover, CSF (cerebral spinal fluid) from the tubing had leaked out into the bedding. The neurosurgeon had given the anesthetist orders to replace the shunt.

That procedure did not go well. Karlton pleaded for the work to be done quickly and painlessly. “Please don’t hurt me,” he begged. But it was painful. And initial results were unsatisfactory. The anesthetist was already talking about repeating the procedure as he wheeled Karlton’s bed back to the ward.

The anesthetist left it to the nurses on the ward to connect the shunt line to the collection bag. I walked in late and saw a lone nurse standing with sterile gloves on, staring at the tools before her and trying to figure out how everything should go together. Then she walked out of the room, using a sterile gloved hand to pull open the door as she left.

This situation was too much like the one of the lumbar puncture. That time I had gone along despite increasing concerns with the way Karlton was being treated. Jenn had given me a pep talk afterwards, and it helped me figure out that I needed to intervene here too. I expressed to the nurse my concerns about the sterile technique. Choy-Lang chimed in demanding that the nurse have an assitant, someone to run errands if necessary. But no one was available. The ward was dangerously understaffed that evening, and one shift of nurses had gone to dinner. We ended up running to the Intensive Care Unit and borrowing a nurse for the procedure.

But things got even worse as the evening wore on. The new spinal shunt was not draining CSF into the bag. The nurses wanted to flush it. At the same time, the vein line receiving the IV fluids had infiltrated. The nurses asked the house surgeon to cut a new line into a vein. Moreover, Karlton was experiencing new sources and higher levels of pain.

Again we had to be assertive. When the medications nurse came to give Karlton the injection of anticoagulants into his stomach, he refused to permit it. Next, the three of us had our own confrontation with the nurses. We said we would permit no more procedures for the night. Karlton would accept oral medication, but they were not to stick him, prod him, flush him, tear tape off the hair on his arms, or do anything else that would disturb his rest. We would consider re-starting all the procedures in the morning.

It surprised us how quickly our “No” got people’s attention. Suddenly the house surgeon had time to talk with us. And he made several telephone calls in the night to the neurosurgeon. In the end, we backed down on the vein line. We weren’t willing to take the risks involved in suspending antibiotics for so long. But the medical staff kept their distance from Karlton’s room for the rest of the evening and all night long, entering only when required to.

I spent the night in Karlton’s room, dozing in a chair. He did not rest well. And he had a lot of pain. But I was there each time he awoke. I gave him the bottle and the bedpan when he needed them. And he had me to bug the nurses for his next round of pain relievers. Best of all, there were no new prickings, proddings, or other such irritations.

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I object when nurses refer to Karlton’s “good arm” or his “good leg.” My problem is that such terms imply that his other limbs are somehow “bad.” If the purpose of rehabilitation is to make those limbs functinal again, we defeat our efforts when we use negative language and mental images. At ISIS I confronted several of the staff about my concern. One nurse responded good-naturedly by naming Karlton’s left arm Tim and his left leg Tom.

Yesterday Karlton was talking to a friend about his two sides. He said something like, “It’s my strong side, or my good side. But Dad doesn’t like it when I talk about my good side. You know how he can be sometimes.” Enough said.

In my last posting I referenced a joke Karlton had made and his ablilty to laugh at it painlessly. He shared the joke with another visitor last night. And this morning he made reference to it again. He does not always get all the PTA questions right (yesterday he thought he was in Queenstown, not Dunedin), but his short-term memory is showing marked improvement.

The shunt for the CSF is draining well, and today the bubble on the side of Karlton’s head is not noticeable. Yesterday he stayed awake longer and was more alert than he has been since his return to hospital. Today he was able to take a shower while sitting in a rolling chair, and I washed his hair. He’s looking pretty flash.

Recently, whenever Choy-Lang and I talk about going somewhere, Karlton assumes that he’s going along with us. Then we have to clarify that our plans did not include him. It’s almost sad the way he takes the information in a quiet, resigned way. He’s fed up with being in hospital, and we keep telling him that he has to stay. Having his blood drawn is the thing that vexes him most. He’s on anti-seizure medication and high levels of antibiotics, so I suppose that twice daily monitoring is necessary. The improvements in his prognosis are encouraging, but it hurts to see him have to endure so many pain-causing procedures.

A local reflexology therapist has offered her services to Karlton. She stopped by yesterday and showed us what she called the Brazilian technique, a simple procedure that we can do ourselves. We made an appointment for her to come back and give Karlton a treatment.

Wishing you a restful weekend.

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Friday morning was a busy one. Karlton’s nurse got him up and into the shower–the first shower he’s had since returning to the hospital last Monday. He also got a shave; his being on anticoagulants makes us nervous about letting him use a triple-blade razor. In the midst of all this, he had to answer the PTA questions. Was he only joking when he answered that his name was Leonardo Di Caprio? His PTA score was a mere 8.

While Karlton was sitting on the rolling chair, dressed in only a hospital johnny and waiting to go to the shower, I noticed how different his arms and legs have become from each other. The right side continues to look athletic and muscular; the left limbs look thin and the muscles are smooth. I’d already noticed the change in his abdominals. His lean “six pack” is beginning to sag and go soft.

Early in the morning Karlton told me that Jennifer and Alexa, his sisters, had been sleeping in the bed next to him all night. He was concerned that Alexa hadn’t woken up. Usually those ideas go away by themselves. But yesterday afternoon when Alexa telephoned, he told her about the incident. Somewhere in the intervening hours he had figured out that it didn’t quite make sense.

Concerned about the continuation of services once Karlton returns to the United States, we have been looking abroad for the answers. What a surprise it was to find that a well-respected neurologist from San Diego is practicing temporarily in Dunedin and has been seeing patients on Karlton’s floor. Besides having many contacts back home, the man is active in the Brain Injury Association of America. Choy-Lang was able to spend some time with him in the afternoon and get some tips for how to coordinate services once he is States-side.

A childhood friend of Karlton’s is in New Zealand on business and has visited him frequently this week. Last night they went through some old photographs together. Karlton had agreed to look at photos if he could say “pass” for the ones that he didn’t care to look at. Given the opportunity to have some control of the situation, he was willing to use his eyes in a way that he has shunned to date. The need for control is probably an important one. His body has been operated on, stuck, prodded, and exposed largely without his consent or at least any real ability to deny permission. This was a way he could have his say.

As the evening wore on, the two friends got silly. They laughed together. And then they laughed again. Big, mirthful belly laughs, mind you. With no reproofs for the laughs making his head hurt. Yes, he is getting better again.

Thank you once again to all of you for your whole-hearted support and encouragement. Special thanks go to Jaimee, Jane, Ryan, Sarah, Tobey & Mary Ellen, the Antwis, and the Sorrentino/Stahls.

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