{Karlton Bontrager}

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.

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.

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.

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.

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.

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!)

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.

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.

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.

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.