{Karlton Bontrager}

Yesterday was such a change of pace. Three friends of Karlton’s took Choy-Lang and me on an excursion. We went to a beach that was like a scene directly out of a movie set. The approach to the beach was from a high hill. As we approached, we had a bird’s eye view of the beach, two huge rock formations in the water, and the thundering waves of the aquamarine ocean. The hill was actually an enormous sand dune, and we slid our way down to the water’s edge. The wind was cold and strong as we hiked about half a mile across the beach to where we saw sea lions, seals, and one lonely yellow-eyed penguin. The penguins are nearly extinct, probably because they stand in just one limited area during their molting time. That’s what this little guy was doing, and that is why we were able to see him from fairly close up. The climb back up the steep, shifting sand was arduous, but we returned to the hospital so refreshed.

Karlton, too, seemed to benefit from our time away. He seemed brighter and more alert, and he was certainly more interactive. A friend from Queenstown had driven down and was visiting him when we arrived back. We learned that he greeted her orally with, “It’s good to have you here.” His written messages too were easier to decipher. At the end of the day, after all his company had gone, and when we too were planning to leave, he wrote using ABC letters to spell out the Japanese words for “Thanks for helping me.”

It was truly a good day for all of us.

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Yesterday was a quiet day. Karlton continues to sleep much of the day. The PTs were off for the weekend, so they didn’t get him up in a chair or make him stand. Occasionally he asked to write something. But much of the time he slept.

This morning (Sunday) a PT stopped in to listen to his lungs. He then got Karlton to sit on the side of the bed. Karlton wasn’t excited about that; he was all too ready to lie down again. The PT wanted to get him out of bed and into a chair, but Karlton nixed that idea.

Each week, I’m told, the medical staff will remove the old tracheostomy and insert a narrower one. It sounds as if they are encouraging him to get along without one again. The smaller one should make it easier for him to swallow. I believe swallowing training will begin again on Monday.

Choy-Lang and I have been staying at a hotel that’s set up rather like a Ronald McDonald House. It’s sponsored by a charitable organization, so it’s reasonably priced. It’s just across the street from the hospital, and is also convenient to shopping and restaurants. Someone else had booked the room previously beginning today, though. So we’ve moved to a hotel. It’s more spacious, has a cooking range, and is only 7 minutes’ walk away. So part of today’s agenda includes getting ourselves resettled.

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In his talk the day before, the ENT specialist had indicated that Karlton might come out of the anesthesia quite quickly, perhaps within minutes. But it was not that way at all. At noon we got word that he is in the Recovery Room, and he didn’t come back to the ward for another hour. Then he slept most of the afternoon and evening. Occasionally his left eye would open and seem to focus, but then it would roll back into his head and he would continue sleeping.

Karlton looked like quite a sight when he came back from surgery. His face had a yellowish tint where it had been washed in iodine. He had a single suture on his lower right cheek where the maxilo-facial people had gone in under the bone to lift it up. Just under the right eye was what looked like a line of suture thread. It held together the top of the cheek where the surgeons had inserted a titanium plate to support the cheek bones. The thread was anchored to his forehead at the top of his nose and to the right side of his face. It was held taut in that position by the anchoring tapes. More suture thread came from his right nostril and was taped to the lower side of his cheek next to his mouth. That, we were told, was to pull the packing out of his nostril when it is ready to come out.

We had three scares afterwards, when things didn’t go as expected. Adding to our fears, was the ignorance of the nursing staff about what was going on. A few worried telephone calls to the House Surgeon (resident) and the ENT specialist came back with the response that those reactions were to be expected. But then why didn’t the surgeons communicate that to the nursing staff???!!!

The most concerning incident was the blood that oozed from the line of suture tread under the right eye. As Karlton’s face became swollen (luckily, we were told to expect that), the string pulled taut appeared to cut into his skin. Dark, thick blood oozed from that site. The House Surgeon assured us that it was better for the blood to exit the skin than to be trapped under it. But it did look nasty.

So it was quite a day for us all. We, his parents, and the nursing staff had several scares. But Karlton on his painkillers slept through most of it. We are very pleased on the whole with his care and with the responses of the medical staff when things don’t go as expected. We did feel a bit angry about the poor communication about developments after the surgery. We’ll have to address them as we have opportunity.

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In their most recent telephone conversations, Jennifer and Alexa have given me feedback that my explanations have not been altogether clear. First of all, Karlton is not sitting or standing entirely on his own. He manages these accomplishments with the assistance of three physiotherapists (PTs) who are there to support, anchor, and lift him as needed. When he sits alone on the side of the bed and dangles his feet, a PT sits behind him on the bed, ready to catch him should he fall backwards. Another PT is at each foot. When he initiated standing the other day, he merely leaned forward and attempted to straighten out his legs. The PTs were lifting him as well and controlling his balance. Because he is unable to move his left side at will, one PT stations herself in front of his knee is such a way that it can’t buckle and send him falling to the floor. When they put him in the standing apparatus, they also secured various straps to hold him in that position to relieve the stress on their own backs.

Another concern was about the operation he had yesterday. I mentioned that the bones around the eye socket are like “a broken bag of biscuits.” That typifies the bones in the cheek area as well. The doctor discussed the eye because of its proximity to the surgical site and the potential for the work to affect the eye. But their work was specifically to reconstruct the cheek and to create a wall between the nasal sinus and the brain. They did not work on the eye or the eye socket.

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As I write this, Karlton is in surgery. The maxillo-facial people had told us that they had a 2-week window of opportunity to work with him, and today marks the 2nd week since Karlton’s accident. Specialists from the dental school will be reconstructing Karlton’s right cheek. Then the ear-nose-throat (ENT) specialist will remove a bit of muscle from his thigh and use it to form a barrier between the nasal sinus and the brain cavity. Last of all, they will replace the trach. We expect the operation to take about 2 hours.

The ENT specialist spent a long time talking to us yesterday afternoon, explaining the procedure and its risks as well as answering our questions. He likened Karlton’s bones in the area around the eye socket to a broken bag of biscuits (cookies). He stated that the cheek reconstruction was fairly straightforward. The maxillo-facial people will insert a titanium bar behind the bones to reinforce them.

The second procedure is more complicated. First, they’ll need to locate just where the drip is occurring. Working with small cameras (endoscopes), they will have a look around. But each time the camera lens gets dripped on, it will have to be removed, cleaned, and reinserted. ENT specialist told us that he feels confident that he can do what he needs to do without causing further damage to the right eye.

Karlton can open his left eye quite wide now, and he has an unblinking, unnerving stare. He didn’t respond when we explained to him that he’d be going back into surgery again. He just closed his eyes as if being terribly resigned. The ENT specialist thought that the entire operation wouldn’t be particularly painful for him. What is likely to bother him the most will be the donor site from his thigh.

Earlier in the day the PTs got Karlton to stand again. He stood straighter than ever before, holding his head well. The schedule for the therapists seemed to be effective, yet he was exhausted by the end of the day again.

Yesterday I failed to mention that Karlton has developed a white coating on his tongue. The medical staff assured us that such a thrush is common when people are not eating, and it is easy to regulate with antibiotics. But it has a terrible odor. We’d been tried so hard to hear what he had to say to us, but his breath was overwhelming.

Thanks again for the many cards and messages of support. They do keep us going!

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We’ve had so many incredible advances that we knew there’d have to be some regular days as well. Yesterday was a “regular” day. Karlton has so many therapists trying to work with him that he’s being “therapied” to death. He was exhausted yesterday to the point of just wanting to sleep most of the time. He did listen to his sister on the telephone and manage to tell her “Happy Birthday, Alexa.” But afterwards he was too tired to even listen to his other sister and her husband when they telephoned.

Running interference for their patient, the nurses stepped in and organized everyone’s access to Karlton. They set up a schedule for when each could work with him and even for when we could see him. They included a 1.5 hour rest period in the morning. That’s in addition to the 2 hour rest period in the afternoon. We’re hopeful that the schedule will help him with his energy level.

Karlton says that he hurts all over. That should come as no surprise. He’s been through so much. He’s probably felt that way all along but been too doped up to realize it or unable to communicate it.

The results from the lab came back on Karlton’s nasal drip. It is indeed cerebral spinal fluid that drips from his nose when he sits up. That means that there’s no solid wall between the cavity for the brain and his right sinus. If fluid can drip down, microbes can likely work their way up as well. The Ear, Nose, & Throat specialists are to stop by today to see about repairing the bones around the sinus. But they cannot do their work until the neurosurgeon gives the go-ahead. It’s all interrelated and so complicated.

Despite his good progress to date, he’s not out of the woods yet. Your continued prayers, positive thoughts, and good wishes are much appreciated.

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Yesterday the PTs got Karlton up in a special apparatus that supports him as he stands. He stood for about 5 to 7 minutes. Then they put him in a chair. The PTs weren’t even out of the room until the speech therapist and OT were trying to get at him.

The OT comes around with sheets of multiple-choice responses that he can point to. She checks his awareness of time and place. One sheet has “2002, 1982, and 1996” on it. She asks him what year it is and waits for him to point. When she asked him his age, he didn’t point to “22”. Instead, he indicated that he was 23 years old. True to form, he regards the whole exercise as pretty much a waste of time. It’s hard to get him to understand the relevance of the task and cooperate.

The speech therapist worked on his swallowing. First, she felt his throat muscles as he swallowed the saliva in his mouth. Next, she put some blue food coloring in his mouth and had him swallow that. After a wee wait, she had the RN suction his trach to see if there were any traces of blue, indicating that the dye hadn’t completely gone into his stomach. He passed that test all right.

Next, came orange juice thickened to the consistency of honey. The speech therapist put blue food coloring into that too. She tried to give him a few spoonfuls, but he kept his teeth clamped tightly. Then Choy-Lang took over, coaxing him in Japanese. He took several spoonfuls that way, then grabbed the cup and tried to pour it down his throat. That got everybody’s attention very quickly. They want patients to do things slowly–one step at a time–so everything is controlled and they can get things back on track if they go astray. But that’s never been Karlton’s way. He wants to run before he learns to walk.

When no blue showed up in this trach this time, the nursing staff ordered up some pureed fruit. It took forever to get it to him (he’d been without feeding all night long, and it was already past noon), but eventually it came up. Again they put blue coloring into the food, and again Choy-Lang feed him. Once again, Karlton took things into his own hand. He grabbed the spoon and started shoveling the fruit into his mouth. Unfortunately, we had to take it away from him. It was just too dangerous for him to gobble it down like that.

During the 2:00 to 4:00p rest period, an Ear, Nose, & Throat specialist used a scope to reinsert a naso-gastric tube. Once the X-rays came back showing that it was inserted correctly into his stomach, they started him on liquid nutrients again. He must have been starved by that time.

Since he pulled out the naso-gastric tube once, the RNs wanted to restrict his hands. They tied his right hand up with cloths and tape. But he wriggled out of the mitt twice. Then they reverted to the “witches fingers”–the long strips of tape to 3 of his fingers so they can tie the ends of the strips to the bed rail. But during the evening, he managed to work his knee into the slack and pull hard enough to break the strips. In the end, they put a stiff wrap around his elbow. Without bending his arm, he can’t get at the naso-gastric tube. He had that on this morning when we returned to the ward.

His lungs continue to cause problems. The thinking right now is that he did get some food into his right lung. The PT was in early today to do some pounding on his lungs, hoping to work some phlegm loose enough for him to cough it up. It was reminiscent of his infancy in Germany when a physiotherapist did the same. It worked well then, but he’s really sore inside now from suctioning, coughing, and all kinds of poking and stabbing. He just wants to be left alone.

The miracle for today is that Karlton can talk! Not fully audibly, but nearly. The RN explained that he manages to get “a wee bit of” air past the trach and through the vocal chords. But just as with his writing, we’re having difficulty understanding what he means. I did understand when he said, “I’m going home,” and I assured him that we were eager to take him there.

To date, we see little movement on his left side. But we’re told that that is dependent on the swelling going down in the brain. It could take months for that to occur. So we remain hopeful.

So many cards and email wishes have come through. We’ve run into a few technological snags, but we read the messages to him every day. Jenn, Alec, and Alexa keep prodding us with strategies for stimulating him–like speaking to him in Spanish and showing him family photos. They’re a great team!

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It’s been quite a mixed day. The news has been mostly good, but Karlton’s mood has been more negative. He seems really alert when he’s awake, and he’s quite likely having to face the reality of not being able to do whatever he’d like to do. He seems rather sad, and he’s not always compliant when the nursing staff ask him to make a fist, stretch his leg, or open his mouth to let them take his temperature.

The PT staff came round and got him sitting up on the edge of the bed again. Then he took the initiative to stand up. He sat down again immediately, but then he stood up again. And again. He did so about 4 or 5 times. Next, they put him in the La-Z-Boy recliner for a good spell, and he tolerated that well. They predicted that he’d likely be exhausted from that workout, but in the evening he was again alert and raising himself by the elbow up off the bed.

While he was in the recliner, he pulled out his naso-gastric tube. The doctors inserted another one and then X-rayed him to see if it was correctly placed. It wasn’t. It had entered his stomach and doubled back. Later they inserted another one, and again it had doubled back. So they gave up on it. He was without the tube for the night. It bothers him a lot, so he must have been glad to be free of it.

Today the speech/language pathologist is scheduled to stop by. That person will work with him on swallowing to see if he can do without the feeding tube. If he can’t, an ear, nose, & throat specialist will have to use an endoscope to insert a naso-gastric tube correctly.

Holly, one of Karlton’s friends from Queenstown, called yesterday. She’s a reporter for the local newspaper and is doing an article on wearing helmets. She wanted to quote Choy-Lang and me in the article, but I doubt that we gave her any usable quotes. (There go our 15 minutes of fame!)

Another milestone was getting the staples and sutures out of Karlton’s head. It’s a fairly simple procedure and he tolerated it well. The scar is really nastly looking, but at least he no longer needs outside supports to keep his head together.

This morning a box arrived from the hospital where Karlton was first taken. It contained the clothes he was wearing when he arrived there. In addition to his boots, trousers, and the other clothes they were able to pull off him were two shirts and an L.L.Bean fleece pullover that had had to be cut off.

Working in special education as we do, Choy-Lang and I have been rather frustrated with the OTs’ lack of response to Karlton’s communication needs. They provided him with an erasable board, but that doesn’t always work well. We have difficulty reading his writing. It’s as if letters tumble out, and he is unable to slow down to write them carefully or to insert vowels as needed. We were thinking that he could use a communication board or perhaps even a laptop computer. But they’ve been slow to respond.

Yesterday he did use the board to write that he’d like to watch TV. The response was an immediate ‘No.’ They’re concerned about seizures and afraid that the flicker of the TV screen would cause him to seize. Perhaps that will stand in the way of his using a laptop computer too.

That brings you pretty much up to date for now. He received 4 cards from the States today. Thanks once again for all your support.

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Is it possible that we’ve been at this for over a week? The days all blur together, and we know that Karlton has made progress, but sometimes we forget just how and what steps were involved. The website preserves all of the information for us. It also reminds us of the miracles we’re seeing day after day.

Yesterday Choy and I spent a lot of time at the university, checking and responding to emails. When we got back, the physios (PTs) had Karlton sitting on the side of the bed, dangling his legs. He’d been up in a La-Z-Boy recliner before, but the chair had given him considerable support. This time he was sitting fully on his own. He sat there for about 5 mins., they said, and then he was ready to lie down again.

The exertions of sitting up–plus all the probing and stabbing that the hospital staff do–wore him out. He spent most of the day alternating between sleeping and eyeing us soberly. He was able to open his left eye wider than ever. He’s unable to open the right eyelid, however. Both eyes have only a little redness about them now, though the right eye is still noticeably swollen. The swelling in his face and hands has gone down considerably, and you can see the old Karlton in his face now.

Karlton can be playful with his hands and feet, but his face is nearly expressionless. Occasionally, he gives us an eye-rolling sneer, but he doesn’t smile. Last night I encouraged him to smile, and for the briefest second the corners of his mouth turned up a trifle. He did the same this morning with encouragement. I wonder if it’s hard for him to smile.

Full inflation of the left lung continues to be a concern. Apparently his coughing does not loosen the phlegm as much as is hoped. So the staff is having to suction him often. On the other hand, they’re reducing the amount of oxygen that he gets, since he’s breathing so efficiently.

Alec/Derek, Karlton gets anticoagulant shots twice a day in his stomach. If I understood correctly, they don’t give the shots in the arm because there’s too little fat there, and they want the body to absorb the medication gradually. But Karlton is so lean that I’m wondering if there’s really any gain to giving the injection in his stomach. On the other hand, it goes just under the skin, so maybe that helps.

This morning the physio was back, saying they were going to try transferring him to a La-Z-Boy, and he’d have to stand on the floor to make that transition! How quickly he is moving–sitting without support one day and standing the next! She warned us that he’d probably sleep for the rest of the day after he’d done that.

Last night Earl, Sophie, and Aidan–university students and rugby friends–invited Choy and me over for dinner. As students, they live simply, but they shared with us so generously. Earl was cook, and he prepared a magnificent vegetarian lasagna and a delicious curry. They have a big screen TV, and together we watched “Fear Factor” and something like “Whose Line is it Anyway?” It was so refreshing to get away for a bit.

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This may have been communicated, but somehow it slipped past us. The neurosurgeon has replaced the sections of skull that were removed earlier. So Karlton’s head is whole again. He continues to try to write, sometimes more successfully than others, and keeps one eye (the left one) open a lot. He was able to stand with a lot of assistance, and he still sleeps for long stretches at a time. We in the family have been talking to him on the phone; although he is unable to answer, he does seem to hear and understand what we’re talking about. Mom says his blood pressure tends to go down and he seems to get calmer when we talk to him. He wrote that he wants to watch TV, but at this point they are afraid that it might cause seizures, so no TV yet.

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