{Karlton Bontrager}

Is it meningitis or is it not? The answer seems to vary according to the person we talk to. One person says the term is a general one used for any kind of infection in the cerebro-spinal fluid (CSF). Yet the lab has been unsuccessful at growing anything in the collected CSF samples. Maybe it’s something completely different, like a urinary tract infection. In any case, Karlton’s body is fighting an infection, though its location and specific type has yet to be identified.

Yesterday his temperature would spike to 39 degrees Celsius (102+ Fahrenheit), then come down again. Karlton had goose bumps on his arms and was complaining of feeling cold, but his nurse turned a fan on him and put a cold, damp wash cloth on his forehead to get the temperature down. In contrast, the day’s blood work indicated that his body and the antibiotics are winning the battle. By evening, his temperature was back to normal again.

The fever and the medications have made his mind groggy. Once again he sometimes tells us things that just don’t make sense. In the afternoon, he wanted me to take the blankets from the foot of his bed and roll them into a ball so he could use them as a pillow. At dinnertime, when Choy-Lang was encouraging him to eat, he told her that he had been to softball practice earlier and had eaten a big “softball meal.” I inserted that he should eat the food before him so that he’ll have the energy to run around the bases faster. But he wasn’t buying that. He looked at me incredulously and said, “How could I run? I can’t even walk.” He’s allowed to hallucinate, but we’re not.

The shunt from the base of his spinal chord is not draining properly. The bubble on the side of his head has grown big again, though it remains malleable. A resident checked out the mechanics of the shunt and could locate no problems there. But very little CSF is accumulating in the drain collection bag. Something is wrong here, and that is troubling. We keep holding our breaths, fearing that something else will go wrong. The good news is that light and noise are no longer such abrasive stimuli for him. And Karlton is able to rest.

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Yesterday was a good day. Thank God for good days!

Karlton sat up in the chair for breakfast, and he ate a decent breatfast, though only half the quantity of breakfasts last week. He sat up in the chair again for lunch. And twice thereafter he asked to sit up on the bedside commode rather than use a bedpan.

His nurse for the day was a tall man who engages in the banter that Karlton likes so much. For every argument Karlton made for going back to bed, this RN had a counter-argument for staying up a wee bit longer. Moreover, he used the transition times between bed and chair to get Karlton to stand up straight and bear weight in a normal stance rather than letting him get away with a quick-scoot, knees-bent-and-butt-out posture. In the same way that coaches do with athletes, this RN offered tips for standing erect. That, of course, was an excellent strategy to use with Karlton. It gives him more to work on than just the transition itself.

During the night, we were told, Karlton had removed the bandage several times. During the day, he asked us repeatedly to take off his “Al-Qaeda turban”. It must have been getting tighter as the fluid continued to accumulate. The bandage forced the fluid into the area of his right cheek and around his eye, and it was getting markedly more swollen. A decision was made to insert a shunt at the bottom of his spinal chord.

In the mid-afternoon, Karlton was taken to theatre [to put a shunt in his spine]. Rather than a full-scale operating room, this was a curtained-off corner where a doctor could work efficiently on a quick procedure while the patient remained in his or her hospital bed. Unlike the clumsy way the lumbar puncture had been carried out the day before in Karlton’s room–with a fellow resident being sent repeatedly to retrieve forgotten items–this procedure was carried out professionally. Karlton’s RN went along to theatre, and he–not I–held Karlton in a tight fetal position. The anesthetist had an assistant close at hand to take care of anything that sterile gloves could not touch, and all supplies and necessities were within reach. Most importantly, the anesthetist treated Karlton as an important part of the procedure, forming a rapport with him ahead of time and checking frequently about his comfort. We returned to Karlton’s room some 30 minutes after he had left.

Karlton slept most of the rest of the day. When he awoke, he was very confused. Then he would fall asleep again. I had understood that the anesthetist had administered only a local. Karlton’s behavior, though, suggested more generalized effects. He did mention once that the headache had let up. The cursed bandage just fell off when the swelling in his head went down. For the first time in ever so long, Karlton was able to sleep with the right side of his head on the pillow.

The shunt has a long chord, anticipating a future time when Karlton will be able to stand up and move around. At this point we do not know how long it will need to be in place. If a permanent shunt is needed, it will require surgery to place it discreetly inside his body.

In her evening rounds, the neurosurgeon remarked about how well Karlton is doing. She explained that any kind of infection that involves the cerebro-spinal fluid is called meningitis. Blood work indicates that his body is responding well to the antibiotics. Moreover, by later today lab results on the spinal fluid will identify the organisms that are causing the infection. That will allow the use of antibiotics aimed at fighting those specific agents.

In your email messages, so many of you have reminded Choy-Lang and me to take care of ourselves, to get out of the hospital occasionally. The receptionist in one of the wards is in collusion with you. Last night she drove us outside Dunedin, onto a lonely country road, and took us for a walk along a dark river path to see glow worms. It was magical! So many pinpricks of blue bioluminescence all around us. Afterwards, she took us to a high hill overlooking the city. This time we saw lights of a different source in patterns we’re not accustomed to seeing in the United States. We saw so much beauty in such a brief time. We ended the evening at a very nice restaurant compliments of Jennifer and her husband. When we returned to say good-night to Karlton, he was resting peacefully. We too felt at peace.

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Each time Karlton has made a move to a different ward or hospital, we’ve decorated his room with the cards he’s received, photos of family and friends, and the beautifully patterned panels of cloth that Alexa brought back from India for him. Psychologically, it just may be more effective for us than it is for him in creating an inviting and secure home away from home.

Yesterday Choy-Lang and I headed up to ISIS to retrieve those things as well as the clothing and other items that have begun to accumulate since he went into rehabilitation and his friends from Queenstown have brought more things from his flat there. The ISIS people informed us that we needn’t be in a hurry to take his things. They will hold his room for him. Regardless of how long his stay is at Dunedin Hospital, his next step will most likely be rehabilitation at ISIS. And we can rest assured that his room will be there for him.

What a gift that was! No, systems do not always work efficiently when they interact. In fact, they regularly do not in so many ways. Yet here is an example of one way that one system has remained open to flexibility. It helps make the bitter pill of the previous day’s inefficiencies easier to swallow.

Back at the hospital, the antibiotics made Karlton drowsy. He slept for long periods of the day. A number of friends stopped by to visit, and he was able to be alert enough to make conversation and a few humorous remarks with them.

Karlton complained much less about the light. More and more here lately he objects to noise. We did all we could to make the room quiet, speaking in low voices, limiting the number of people in the room, and closing an outer door so that the conversations and ringing telephones at the nurses’ station will not upset him. Yet the machines that deliver his antibiotics use sound to alert the medical staff to problems in delivery. Closing the outer door means that nurses don’t hear the beeps, so the machines sound them longer.

A bouquet of balloons from Choy-Lang’s sister’s family arrived yesterday. They add friendly color to the room especially now because we haven’t managed to get the usual decorations up yet. In the afternoon when Karlton was sleeping peacefully, however, one of the balloons popped and made us all jump.

Karlton is so afraid of drinking water. It used to be his favorite drink, but now he’s afraid of having to cough, thereby increasing his headache. Yet he doesn’t object to drinking diluted cordials (sweetened, flavored water), not realizing that they have the same risk of making him cough. Yesterday when he had an eye patch on to block the light, Choy-Lang gave him a drink of water. She told him that it was the same kind of cordial but without the sugar and the flavoring. He tolerated it quite well. Later, after multiple drinks of that same concoction, he noted that it tasted just like water!

This morning when I stopped by his room, Karlton was alert and giving a hard time to his nurse for the day. He had already been up in a chair to eat breakfast and was back in bed again. During the night he had taken off the bandage around his head, and the bubble area had grown noticeably again. His nurse re-wrapped it once again. We’ll see how far we get today at keeping it on. Meanwhile, Karlton drifted off into peaceful sleep as I rubbed his feet for him. (How he loves to be pampered!)

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Yesterday upset the apple cart. Karlton has made such positive progress for so long, and I really had no right to expect the trend to continue. Yet I was unprepared for things to unravel so quickly.

When I arrived at ISIS about 11:00a., one of the residents was examining Karlton. Overnight the side of his head over his right ear–where the blood had pooled earlier–swelled up again. The doctor asked all kinds of questions about sore throat, stiff neck, etc. Karlton answered affirmatively to all of them. I anticipated a diagnosis of meningitis. But the resident deferred to his supervisor who deferred to the neurosurgeon.

Somewhere along the way, the resident or his supervisor asked Karlton if he had had a fall recently. To this question too Karlton said yes. He told a story about finding himself naked on the floor of the bathroom with the nurses looking down on him. Something was wrong here. Why hadn’t we heard about this incident? And the nursing staff is consistenly careful about maintaining his modesty, even when he is on the toilet. I doubted the accuracy of his report and hoped that he was equally mistaken about the stiff neck and sore throat.

For the neurosurgeon to see Karlton, he would have to make a trip back to Dunedin Public Hospital. I pointed out that the neurosurgeon often has a full day of surgery on Mondays and typically cannot see patients until 5:00 or 5:30. I did not want Karlton sent to the hospital at 11:30, only to have to wait for hours on end to be seen. The ISIS doctors agreed to make an appointment. They called and said that someone on the neurosurgery team would see Karlton at 2:30. He was to go by ambulance at 1:00 so blood samples could be taken and tests run in time to the have results available for the neurosurgical examination.

As before, chaos began its work when the two systems–ISIS and Dunedin Public (each an arm of Otago Healthcare)–interacted. Despite the telephone calls and appointments that had been made at official levels, what seemed to matter was that Karlton had arrived at the hospital without a letter from ISIS. And without a letter, apparently, no one was able to do anything more than take his vital signs. We were put into a curtained-off area and left there to wait. And wait.

A neurosurgical resident finally appeared about 3:00. But then the so-called bubble on the side of Karlton’s head had grown noticeably, distorting his face. The resident ordered a CT scan and the blood work that was supposed to have been done upon our arrival. At last, some one was in charge.

Or so we thought. First Karlton went for the CT scan, then he returned to the Emergency Room. The next move was to his former room on 5B. He had not had a regular meal since noon of the day before, though he had eaten a bit at breakfast. Without physicians orders, the nursing staff was unable to give him anything to eat or drink. One nurse did allow him to suck on ice, but Karlton could not tolerate its coldness. So he just had to wait with an empty stomach and a very dry mouth.

The neurosurgeon made it to the 5B ward about 7:30p and into Karlton’s room closer to 8:00p. She guessed that Karlton had bacterial meningitis, but she wanted the results of a lumbar puncture (spinal tap) to be sure. And, as might be expected, his stomach was better left empty for that procedure.

The rest of the evening was such a nightmare. First, it was the lumbar puncture. Then the shivering. The endless shivering. Karlton could not get warm no matter how many blankets and coats we piled on him. He kept pleading with us to put him into a hot shower. After over an hour of writhing in the bed, trying to get warm, he fell asleep from medication. But he continued shivering in his sleep for a long time. And the bubble on the side of his head was swelling up noticeably again.

Fortunately, the house doctor who came on at 11:00p has a take charge kind of personality. We’d dealt with her on the evening of Karlton’s third surgery and had been impressed with her ability to make sound decisions under pressure. Once she was able to get to Karlton’s case, she was totally focused on getting him some relief. She reported that the spinal fluid had tested negative for meningitis, though a culture would give more definitive results in a few days. Meanwhile, a small pimple-like infection on his forehead had been identified as stapholococcus, a germ that she said is common and easy to fight. In consultation with the neurosurgeon, she decided to aspirate (drain) the “bubble” and then bandage Karlton’s head tightly so that the bubble could not grow again. I helped her with that procedure, and Karlton tolerated it well. Then Choy-Lang and I went home for the night. It was 1:00a.m.

Karlton has been through so much pain and poking. The headaches have been intense and without let up for so very long. We’re hopeful that the release of the cerebro-spinal fluid and its pressure will relieve him of much of his head pain.

It was gratifying to get a number of messages of support in my email box today. They were definitely well timed. I can’t repeat often enough our gratitude for your continued concern and positive support. It’s days like yesterday that remind me of how quickly life and my perspective on it can change.

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Yesterday was a challenging day for Karlton. It started with his being sensitive to the light. We’ve had curtains on the window throughout his stay at ISIS, but yesterday he insisted on having the curtains closed nearly all the way. Then company arrived in the morning. This included a friend that Karlton hadn’t seen in some time. He acted casually enough, but he was excited, no doubt. With all the hustle and bustle in the room, he began complaining more strongly about his headaches. In the afternoon, he wanted the room to be kept dark. By evening, he was in misery. A nurse kindly explained to us that this was his brain’s response to all the stimulation of the day. Again we were reminded that he needs rest, not stimulation. She advised us to make the room as quiet as possible and to limit our interactions with him.

Karlton refused to take his dinner tray. He was totally focused on falling asleep. He told us that he hadn’t been able to sleep for days. By the time we were ready to say good-bye to him, he had finally drifted into deep slumber. We didn’t dare wake him up, though he’ll probably accuse us today of having sneaked out the door without telling him.

On the positive side, Karlton was able to report a score of 12 out of 12 on the PTA scale yesterday morning. Yet he continues to think there is someone in a bed next to his. Or beyond his head. Or beneath his bed. Karlton had to check with the long-time friend about who was lying in the next bed. He acknowledged that he’d asked me repeatedly, but he wanted to hear from her whether there was someone lying there.

The medical staff remarked again how quickly Karlton is recovering. They assured us that each brain injury takes it’s own course. Perhaps after the stimulation of Sunday, he’ll wake up well rested and ready to take on the routine of the new week.

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Without the stimulation of therapists getting him out of bed and making him do things, Karlton sought a little stimulation of his own. Just before lunchtime yesterday he asked to get up to sit in the chair. Later in the day I asked him if he wanted to listen to music, and he said yes. This is the first that he has listened to music since his second week in the hospital. Various times we offered to put music on for him, but he didn’t want to hear it. But yesterday was different. He even whistled along with some of the songs that he knew well. Today he went even further. He asked to listen to one of the CDs that he heard yesterday.

Like an old man, Karlton has become overly concerned about his bowels. When he eats a meal, he talks about his next movement. And when he talks about going home, he says he looks forward to sitting on his own toilet in his own bathroom. (That’s certainly not prominent in my thinking about home!)

Karlton has a new parlour trick. We bend his left leg at the knee and prop it up with the support of a pillow. Then when all eyes are on him, he pushes his foot forward, and the whole leg extends dramatically. Come on, Karlton, do it again for us!

We’ve heard via the hospital grapevine that another young man from the United States is in intensive care because of a snow sports accident. Our sources tell us that the father is white, the mother is half Japanese, and the son was born in Germany. We’ve given them our contact information with an invitation to reach us if they would like to talk. How our hearts go out to them.

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The nurse weighed Karlton when he took him for a shower yesterday. He was 67.45kg. At 2.2 lbs./kg., that’s 148 pounds, down from his normal weight of 175. He’s lost about 30 pounds in the hospital. No wonder he eats everything in sight.

We had the meeting with the doctor, a nurse, a PT, an OT, and the services coordinator/social worker. We learned that on the Post Traumatic Amnesia (PTA) assessments Karlton had answered 10 of 12 questions correctly the day before yesterday and 11 correctly yesterday. He has to answer all 12 questions correctly on 3 consecutive days to be considered past the PTA stage. The doctor informed us that, generally, the shorter the time a patient remains in the PTA stage the more likely he or she is of full memory recovery. So his prognosis for complete recovery looks positive from that perspective.

We spent some time in the meeting talking about the headaches. The staff emphasized the fact that despite the pain, Karlton is able to walk, move about, and even joke and be pleasant company (well, at least with non-family). They did not discount Karlton’s estimation that these are the worst headaches that he has ever experienced, but they noted that he is not debilitated by them.

The PT stated that not a lot can be done with Karlton while he is in the PTA stage. At the moment, her goal is greater control of balance when he is sitting up. This is crucial when he is transferring from the bed to a chair and back again. He’s tipsy right now, and could easily fall without close supervision.

The services coordinator/social worker pledged herself to getting us in contact with people who can give us more information about the ACC, the accident compensation law. We need to learn more about ACC so that we can make informed decisions concerning Karlton.

When Choy-Lang and I returned from the meeting, Karlton was sitting up and feeding himself a plate of spaghetti. The speech therapist was observing him swallow. He did so well that she decided to try him on a glass of water. Karlton didn’t want to try, fearing that it would make him cough and his head hurt too much for that. But he did agree to drink with a straw. He passed that test with no difficulty. She wanted to graduate him to foods that require more chewing–bread and vegetables that have been boiled until they are soft. But he is reluctant to chew, citing the pain it causes in his head.

In the evening, a guest was visiting when Karlton asked me to scratch his right leg. While I was doing so, he extended the left with a movement that was so natural, I nearly missed it. Earlier in the day, he showed me that he could raise his shoulder and thereby retract his left arm a wee bit. Both movements are very small, but they portend so much for us. We’re hopeful that as the brain recovers from its bruising, he will regain more and more use of his left side.

Karlton’s therapists work Monday through Friday, so he’s likely to have a weekend of rest. I hope you are able to have the same.

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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.

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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.

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