This memorial website was created in the memory of our loved one, Trevor Vieira who was born in Canada on February 02, 1992 and passed away on December 15, 2008 at the age of 16. We will remember him forever.
Trevor died after a short illness. He had Duchenne Muscular Dystrophy and his heart and lungs were too weak to support him. He was greatly loved and will be missed. He died peacefully in my arms just an hour after being removed from a ventilator. He is now in the arms of Jesus and will celebrate Christmas in Heaven.
Let me tell you about Trevor.
A few months after Kayda died in June 2000, I was told that there was an 8 year old boy who had Duchenne Muscular Dystrophy and autism who needed a home. But they were looking for a home closer to where he lived with his family so he could stay at his school. As I was already being trained to care for another child part time, the info about this boy was sort of pushed to the back of my mind. In February the social worker said that the now 9 year old really needed a home. So I said his social worker could call me. I'd pictured a child like most of the others I'd met with DMD who were mostly typical. I didn't think I could cope with a teenager with a progressive illness. When the social worker called he told me the child's name was Trevor and that he was severely developmentally delayed and was non verbal. With that information I realized that I likely could care for him. Then as he was talking the social worker suddenly said "the computer is shaking, the building is swaying, We're having an earthquake"and hung up. By that time I was feeling it where I lived as well. It was over quickly but it took me a couple of hours before I could reconnect with the Social worker and get more info about Trevor. We agreed that we'd go meet him and his family within the next week. We thought that Trevor would stay with me during the week and then go home on weekends as I was going to have this other child over the weekend.
When I met Trevor he didn't seem to be aware that we were there. He wandered around the room. I remembered him finding an item of clothing with strings on it and him sitting there flicking the strings. I talked to him quite a bit and told him that he would be coming to visit me. When I got up to go, he started to come with me. I explained that he wouldn't be coming yet. We agreed that he'd come for a visit at the end of the week. By the end of the visit I knew that his mom really needed him to have full time care. I wasn't too sure if I could handle Trevor as he reminded me of another child I'd cared for who had been quite difficult. But by the end of one day with me, I knew Trevor was different. He was so gentle. He seemed to be in his own world and was definitely a toddler in the body of a 9 year old. He had no awareness of danger and everything went into his mouth. When I brought him home on Sunday I agreed that he would come to live with me the following Friday which was the beginning of Spring Break. By that time I knew the other child likely wouldn't be coming after all so it would be just me and Trevor.
During the first few months Trevor lived with me, he seemed to have no awareness of people. He'd notice if they had laces on their shoes but he never interacted with people at all. I gave him lots of toys to play with and put on children's movies and various music for him to listen to. As the days went by he seemed to be focusing on things more. One day just a couple of months after he came to live with me, I went in to his school. One of the children saw me and said "Oh good, he needs you, he's crying". I went into his classroom and as soon as he saw me he crawled off the lap he was on and wrapped his arms around me. It was the first time he showed that he recognized that I was someone special and safe.
He had had no medical care for several years. About 6 weeks before I met him he'd suffered a severe burn by pouring boiling water onto himself. He had huge open sores and scabs on the top of his head. He'd also had no diagnostic testing or supervision of the progression of his DMD. I brought him home on Friday. Monday we were at my drs' office to see about what to do with the sores on the top of his head, get a referral to a pediatrician, arrange for an appointment with the neuromuscular clinic at the Children's hospital and a referral to a diagnostic clinic.
Even though he wasn't that aware of what was going on around him, he was the most gentle easy going child that I'd ever met. He needed lots of supervision and was very good at getting into things. He also had pretty bad eating habits. He'd stuff as much food as he could into his mouth, take it out, grind it into the table and then put it back into his mouth. I discovered that he responded well to being removed from the table if he continued his behaviour after several warnings. He'd been introduced to a few simple signs at his old school. I was told he didn't have any understanding of them. But, I still remember taking him away from the table before he'd finished his grilled cheese sandwich and him signing "more" "more"over and over. He didn't understand.....my foot!!!!! by the way, he got to finish his sandwich later. After just a couple of months he was feeding himself finger foods very well. By early summer he could spoon feed himself if I put the food on the spoon for him. It was a mess but he was so proud of himself and so was I. A year later, I was on the phone one day while he was eating and was slow at putting food onto his spoon. So he decided to try to do it himself and from then on, he was able to feed himself independently.
He saw the neuromuscular clinic staff in June 2001, just 3 months after he came to live with me. He had stopped walking just 10 days before the appointment. At that time the clinic wasn't using steroids in the boys after they stopped walking so it was too late for him to try them. We came up with a long list of things we needed to arrange and work on for him. As he didn't have an official diagnosis of Autism he couldn't qualify for various programs. So the neurologist said that she'd make it an official diagnosis. She was sure he had it. She also told me he'd never develop beyond where he was at the time. In her report she stated that he was an unresponsive uncooperative child. Various people I knew who had experience with children with autism had met Trevor and said he didn't have it. When he first saw the pediatrician I'd seen with Kayda, I commented on how some days he seemed to be autistic and other days he didn't. The dr. looked at me and said "Barb, he has autism, adjust." A couple of days after his 10th birthday we finally got into the diagnostic clinic at a hospital in the city near us. The psychologist used all kinds of developmental tests and scales. Her conclusion was that he did NOT have autism. He did not have enough of the various markers of autism. A child had to have 6 of the symptoms. Trevor only had 4. But what he was, was severely developmentally delayed. He was functioning at a 9 month old level. His repetitive behaviour was actually typical of a child of that age but that it looked unusual in a 10 year old. He'd also gotten stuck on that sort of behaviour. She also told me not to expect him to progress much further. Most people still thought that he had autism and we never got it taken off as one of his diagnoses. A few years later, we tried to get him diagnosed with autism spectrum disorder so that he could qualify for various services. I took him to the same pediatrician who had been convinced that he had autism. We spoke about it for awhile, and then he looked at Trevor who then looked directly into the drs' eyes and smiled. He said 'well you blew that one Trevor" There was no way he could say that he was autistic. He also felt Trevor didn't need any more labels.
When we thought he had autism I tried to teach him how to play with various toys appropriately and didn't let him play constantly with the beads and strings he loved so much. Once we heard from the psychologist I just decided to let Trevor be Trevor. The beads and strings were like his soother. It was something he needed to do. But he was still constantly surrounded by stimulation. I've been a preschool teacher for over 20 years so constantly looked for learning opportunities for Trevor.
When I put him on his bed for a rest in the afternoon I always put on music. I had quite a variety. After awhile I noticed that he seemed to like to listen to Pete Seeger. I realized that as long as Pete was playing Trevor was content to play on his bed. As soon as Pete ended, he'd either screach, or get down and come looking for me. He got very upset if I put any other music on.
Although Trevor learned to feed himself, he didn't eat much. It was quite a battle to get him to eat. At the age of 10 he was only 54 lbs. Kayda had been the same weight when I got her at the age of 4. As the months went by I tried and tried to get him to eat more and gain weight. I hid high calorie stuff in his milk or juice, put butter on his food, gave him special puddings and much more. He just didn't want to eat, and he got so he didn't trust what I fed him. Early in 2002, I realized that he had reflux. So we saw the dr and he went on his first medication for that as well as for motility. But he kept eating and drinking less and less. It got so I had to keep putting water into his mouth with a syringe. It was horrible. When I spoke with the pedicatrician he suggested that Trevor might benefit from a feeding tube. His social worker was horrified. He wanted Trevor to have a feeding assessment done but there was a long wait. As his situation got worse, the social worker finally agreed to it. We saw a surgeon and he too thought it was a good idea. The surgery was set for mid April 2002. He was also supposed to get his teeth done under anesthetic and that had been set up for the Friday before the gtube surgery. When I took him in for the dental work, they hemmed and hawed and finally decided that they shouldn't do 2 surgeries with 2 anesthetics. So we were sent home. Monday we came back and went through the fasting and were all ready for him to go into surgery. Then the surgeon came out and told me that there were no beds for him after the surgery so it was cancelled. I was NOT happy. The next few weeks were a nightmare. I remember one weekend where I spent the whole weekend trying to get one meal into him. On Sunday at church, a friend asked me if his surgery had been scheduled yet. I burst into tears and said no. On Monday Trevor got to school, started sobbing and when offered some food from his lunch kit, he ate it all down quickly. That's when I realized that neither he or I could take this situation any longer. I called the surgeons secretary and told her we were desperate. Trevor was losing weight and not getting anywhere near enough nutrition or liquids. They managed to schedule the surgery for that Thursday.
Right away after the surgery Trevor was much more settled. And, he soon started being willing to eat more orally. He was sleeping better too. We figure that he'd always been hungry and had been too weak to eat as he'd literally been starving. The tube was the best possible decision for Trevor. The social worker thanked me for persisting with the issue. He finally had his swallowing assessment in the summer. They said he was swallowing ok but was showing that he was at risk for aspiration so we had to feed him carefully. We started thickening his liquids as he coughed a lot on them. Trevor grew to love to eat. He ate just about anything he was given-he still didn't trust things like milk or juice as he still thought I was hiding yucky stuff in them.
Trevor and I had a lot of fun together. He loved water so we spent each summer visiting spray pools, lakes and friends who had pools. I also had a small pool for him at home. He preferred to sit next to the water and just spash. He was kind of afraid of the water. In mid 2002, I decided to ask for a hot tub as a wish for Trevor. It wasn't easy to find an organization willing to grant him a wish as he was so low functioning and non verbal. But finally the Children's Wish Foundation agreed to come meet Trevor. They wanted to see if he was aware enough to really appreciate the hot tub. I showed the person who came all the pictures I had of Trevor playing in water. He got his hot tub in December 2002. He LOVED it!!!!!!!! He especially liked to put his hands over the water fall and make the water spray all over the place. He could drain a third of the water out of the hot tub in just half an hour in it. I had to restrict that a bit as we were on a well and frequently ran out of water in the summer.
In October 2002 Trevor got to be the ring bearer at a friends'wedding. I just laughed when my friend told me she wanted Trevor to be the ring bearer. I was sure he'd swallow the rings. She figured we could deal with that if necessary. He was a wonderful ring bearer. The rings were put on the arms of a stuffed bunny and the bow around the bunny's neck was buttoned on to Trevor's vest so he couldn't throw it on the floor.
In September 2003 we took our first trip to Disney World. We went with a bunch of families of children who had the same condition as Kayda had had (Hydranencephaly). We had so much fun. Trevor loved it. He was still mostly focused on his beads but as the week went on he got more and more alert. We took him to Cocoa Beach one day. We'd been told that it wasn't a good idea as there was a hurricane (Hurricane Isabella) off shore and the waves would be high. But, we went any ways. I managed to get Trevor down near the water. He was so happy. I was terrified as the waves kept coming in and washing over his head. He thought it was so great. After about 10 minutes of him enjoying the water, we looked up and saw these huge black clouds coming at us. We decided it was time to get out of there. By the time I'd dragged him and carried him off the beach, the wind was blowing so hard the palm trees and rain were horizontal. We were soaked and sandy but it was all worth it to see the look on Trevor's face on the beach. Earlier that summer Trevor had started to say "mom"when I was out of his line of sight or if he really wanted something and needed to make sure I knew that. On the drive to the beach there was a bag of cheesies and some chips on the floor near Trevor. He kept leaning down to grab them and when I wouldn't let him have them he kept saying "mom"After our experience on the beach I had my friend stop at a store and Trevor got some chips. I figured that he had earned them.
Our week in Florida was very special. Trevor loved everything we did and saw. He ate everything he was offered. His arms had gotten weaker over the summer and he needed me to feed him most of the time. But, while we were in Florida, especially the night we went to Chef Mickey's for dinner he insisted on feeding himself. On our last night one of the other moms and I decided that we hadn't gotten enough souvenirs so took a middle of the night trip to Walmart. The other people in our condo took care of Trevor. When I'd gotten him ready for bed I noticed that his gtube site was infected so I changed his tube. When I got back from shopping he was asleep but restless and moaning. I thought the tube site was the problem and gave him tylenol. As we got ready to go home in the morning Trevor was quiet and kept sitting forward with his arms in front of him. He also felt extra warm. All through our flight he sat resting his arms on his knees. When we got back to Seattle we put him in his pajamas for the ride home as it was late. As I did this he started to cry. I thought he was just tired. But, for the next week something was wrong. He had a fever, slept a lot and cried frequently which was very rare for Trevor. I took him to the dr and she couldn't find anything so thought he had a virus. I got sick too so we thought she was right. But towards the end of the week the lady helping me care for him pointed out to me that he wasn't using his left arm at all. I'd noticed that but thought it was just the progression of his disease. I went and lifted up his left arm and he started to cry. Our van had broken down the day I took him to the dr so I couldn't take him to the ER until the next day when our social worker came to visit. Sure enough he had a broken arm. After thinking back over the last day or so of our trip I remembered that he'd fallen off of his bed while I was doing something in the kitchen on our last night. That's when he broke his arm and why he was moaning that night. Poor boy. I still kick myself for having missed that for a whole week. It was broken near his shoulder so it was impossible to put it in a cast. So he wore a sling. As soon as the arm was in the sling his fever and pain went away. My poor boy.
In November 2003 our close friends Helmut and Roze for whom Trevor had been the ring bearer at their wedding in 2002 moved away. As we'd always spent Christmas with them, we decided to go to their new home that year. It was many hours away through several mountain passes. I don't drive those roads in the winter and our van was in no shape for that drive so we took the Greyhound bus. We got up there just fine. We had a lovely Christmas. Their dog had had puppies just a week before Christmas. Trevor loved to hold them. One of their neighbours adapted a toboggan so that Trevor could sit in it. I took him for a walk on the nearby lake. I'd forgotten what horrible shape I was in so had to have help to get back. Trevor loved it. The ride home was a nightmare due to a storm and very cold weather. We won't ever try that again, but I'm glad we went.
In October 2004 we again went to Disney World and Florida. This time we were there for 2 weeks. We did many days at DW and also spent a couple of days at Panama City Beach. Trevor got to eat sand from the Gulf of Mexico. Unfortunately I was too afraid of the water to let him get too close. I just remembered how the waves came over him on the beach we'd been on the year before. But he had a blast. We traveled with a friend whose daughter Nikki had Hydranencephaly as Kayda had had. We packed so many memories and so much fun into those 2 weeks. I took 21 1/2 rolls of film. When I finally scrapbooked the pictures they took up 169 12x12 scrapbook pages.
Trevor and I did so much over the years. We were always busy enjoying life. He got to go to an Indy car race, the zoo, on boat rides, camping for a week next to a lake at Helmut and Rozes, to the air show, numerous beaches and spray pools, and much more. Trevor just loved life and activity. He became more and more aware as the years went by. He became more interested in people than in things. He still flicked his beads constantly but often he was looking at people while doing it. We spent a week in Colorado visiting a friend and her children in May 2005. He went to our church Family camp twice too.
His disease marched on though. He eventually became immobile and no longer able to sit. He needed surgery to straighten his feet in Dec. 2004. He was in bright green casts for Christmas that year. He had a lot of problems with reflux and got to the point where he could hardly take in any food via his feeding tube and didn't eat orally at all. In July 2005 he had a jejunostomy tube put in. That worked well but for about a year and a half after that his stomach didn't work well and he needed to have a tube draining his stomach constantly. We didn't let that slow us down much.
In early 2006 it became evident that Trevor's scoliosis was progressing and that he'd need surgery. Where we live there is a 2-3 year waiting list for surgery. In Sept. 2005 his curve was at 16 degrees. In May 2006 it was 55 degrees. He got a new wheelchair that summer but it only fit for a few weeks as the scoliosis was progressing so much. By January 2007 it was 78 degrees. The surgeon said that he'd bump Trevor up on the waiting list and to expect him to have the surgery in the summer. By March Trevor was miserable. Crying, very noisy and not sleeping. We realized that he was in pain from the scoliosis. The next few months were a nightmare for all of us. Trevor needed large doses of morphine just to keep him comfortable. He had to stop going to school by April as he was in too much pain. By the time he had his surgery in July his curve was more than 90 degrees-too much of a curve to be measured. I was always terrified of this surgery as it's huge. But, he came through the surgery really well. He was off the ventilator by the next morning and just needed bipap for part of a day. We'd been afraid that he'd come home needing bipap but all his previous breathing problems cleared up after the surgery. Unfortunately though, he got a very bad infection in his back which required 4 further surgeries and iv antibiotics. He ended up being in the hospital for 10 weeks. The first 5 weeks were at the Children's Hospital in the city and then the last 5 weeks were spent at our local small hospital. That meant I could go home at night which was a relief to everyone, especially our animals.
After the surgery, Trevor was a totally different child. He was so happy that he literally bubbled. While he was in the hospital he kept saying "la la" It meant that he wanted to listen to his Pete Seeger music. As soon as you put that on he stopped saying it. If you put on any other kind of music he'd cry. Each time when I saw him in the recovery room he'd look at me and say "la la". The whole hospital got to know him as the boy who loved Pete Seeger. By Christmas that year we realized that a lot of the sounds he made were actually words. "oove"(move) was one of his first words. It meant anything from wanting to be in a different chair, on his side on his bed, to have something under his arms so he could play with his beads or in a different room. It wasn't easy to figure out what exactly he wanted. With the words came the realization that his thinking was much more advanced and complex than we'd thought. For instance if he said "lun" it meant that he wanted you to walk to his bedroom, get the lamb he slept with, bring it to him and put it under his arms so he could play with his beads easier. We didn't always understand what he was trying to communicate but we did our best.
Throughout 2008 Trevor showed that he was understanding more and more of what was going on around him. One day he'd gotten a balloon with a picture of Elmo on it. As I was taking him to bed I thought he said Elmo. The next day I was telling his caregiver that I thought he'd said Elmo when this voice behind me pipes up with "Elmo, Love Elmo" One day in the Fall his caregiver and I were talking about the Elmo Live toy and how I was thinking of getting him one for Christmas. And, once again, this voice pipes up saying "Elmo" over and over. Several nights a week other people put Trevor to bed. One night I heard him crying after he was in bed. I went in and realized that I hadn't said good night to him. I did so and then as I was walking away, I heard him say in a sad tone "lova lova". I'd forgotten to sign and say "I love you" as I always did at night.
In August of 2008 we finally found a new house. We'd lived in a basement suite way out in the country which was at the top of a very long steep driveway since before I got Trevor. It just hadn't worked well for a long time but we hadn't been able to find anything else appropriate. Our new house was perfect for us. It was large, in the city near many different stores and best of all for Trevor near the train tracks. He loved the new house. It had celing fans in most rooms which he also loved. He started saying "lul" when he wanted a fan turned on. The new house was in the catchment area for his school so it meant he could go on the school bus. I'd been driving him 64 kilometres 4 days a week for the last 3 years. What a relief!!!!! We walked every where.
Just 3 weeks after we moved, we went to Disney World again. This time my friend Heather who was Trevor's 2nd favorite person got to go with us. She works for the company that provides us home support workers. Our regular person offered to let Heather go with us. It was so nice having help on the trip as I'd always been by myself on our trips with him. This time it would have been impossible as he was too heavy for me to lift. We met our friends Lynne & Nikki as well as Lynne's grand daughter Jenny in Florida. We had so much fun!!!!!! We didn't do as much as we'd hoped to but we did as much as Trevor would tolerate. On our last trip he'd cried a lot as we went from activity to activity because he didn't understand what we were doing and because he was so tired. This time I made books for him to help him know what we'd be doing each day. This time there were no tears. He had so much fun!!!!!!!!
The actual trip was hard on him though. Plane seats just aren't meant for a child who doesn't bend. The trip home was especially bad. It was a 6 hour flight. Much of the trip he kept saying "oove"(move). As we waited for all the people to get off the plane he said "oove?"in a plaintiff voice as if to say don't I ever get to get off of this thing. He was very tired when we got back and slept a lot the first couple of weeks. I knew that we wouldn't be able to take him on any more long trips.
Two weeks after we got back from DW I had surgery for my reflux. He was cared for at Canuck Place for the first week and then came home and we had caregivers in the house 24 hrs a day after that. He went to respite for 3 days a week later. He came home on a Friday and as I stay up that night with him, someone else put him to bed. I had a lot of pain the next morning and had to go to the ER. I called his caregiver to come in early so she got him up. When I came in from the hospital, Trevor looked at me and kept saying "ove" (love) over and over in a sad voice. I took it to mean that he loved me and why on earth wasn't I taking care of him. He went on and on. I had to promise to stay right next to him for quite awhile.
I bought a new prelit tree for Christmas this year. Because Trevor loves it so much I put it up in mid November. He just loved to sit and look at it. He didn't want to watch any movies or even the fan once the tree was up. By early Dec. I had put up our Nativity scene and village. I rearranged the living room so that the tree and Nativity scene were against one wall where the couch had been. On that wall was a picture someone had done for me with Jesus holding Kayda close. There was also a picture of a girl getting out of her wheelchair and running into the arms of Jesus. I and others kept catching Trevor staring at those pictures. I'd tell him that that was his sister and that one day that would be him in Jesus' arms. I told him it would likely be a long time though. Now, I realize that Trevor knew it would be very soon.
Around the 1st of December I got a note saying that he'd been grinding his teeth all day at school. That was a sign of pain. From that time on he needed tylenol frequently especially when in his wheelchair. Several days that week I got a call from the school saying he was in pain and could I come in to give him tylenol. Always within 15 minutes of getting the med. he'd be back to his smiley happy self. We also noticed that he was more tired than usual. He usually slept through getting dressed and occasionally would still be dozing when I took him out to the bus. But these days he was still sound asleep when he got to school. His bus wasn't quiet as there were a number of other children that rode with him. One day when he was sitting in his chair sleeping while we waited for the bus I noticed that he was kind of pulling with his chest while he breathed. He'd been doing that at night for awhile but every time we saw the respirologist he'd say that Trevor looked too healthy to have significant breathing problems at night.
On the 3rd of Dec. he didn't have school. In the afternoon he went outside with me and his caregiver to watch us put up the Christmas lights. He laughed because we were pretty silly doing it. Once it got dark we decided to bundle him up and take him for a walk up the street to see all the decorations. He started grinding his teeth when he was put back in his wheelchair so we gave him tylenol. He loved seeing the lights. When we got home Claudia put him into his comfy chair. His whole face lit up and he started laughing. So we thought that maybe there was something wrong with how his wheelchair fit.
On the weekend he was fine. He didn't need tylenol at all except for once or twice at night. We went to our church Christmas dinner on Sunday evening and he was so happy looking around and chattering to everyone.
But starting at the end of the week he started coughing more and more which was a sign that he was having reflux. I couldn't turn down the rate of his feeding pump any more or he wouldn't get enough fluid and calories in 24 hrs as he was already being fed almost 24hrs a day. I just kept an eye on it.
Tuesday the 9th of Dec. I went in to his school to meet with the OT and PT (ocupational and physical therapists) to see if we could figure out what was wrong with how he was sitting. They couldn't find anything but agreed he should get a seating assessment done.
That night when I put him to bed he coughed a lot the first little while and I turned down his feeding pump. I decided that that was enough, he was going to the dr the next day to see if she could figure out what was wrong. So, Wed. am I made an appointment for 4 pm.
Around noon he started coughing and getting congested which meant he had a cold. I was pleased that I'd made the dr apt before he got sick. Usually when he got congested like that I'd panic and take him to the ER and he'd always be fine. I decided to just wait it out and see how he did. Around 1 he stopped coughing and settled down so I was relieved. Around 1:30 I looked at him and saw that he was very pale, lethargic and sweating. I decided to put him on his bed and give him a bit of a break. I checked his temp and it wasn't that high. Claudia arrived just before 2 and I told her we were going to the dr for 4. After just a couple of minutes we looked at Trevor and then looked at each other and said that we had to get him to the ER right now. Fortunately we'd moved near the hospital in the summer. We were at the hospital by 2:20. As I took him in I was hoping I could convince the nurse that he was really sick as he looked quite peaceful and wasn't noticeably struggling to breathe. He actually fell asleep in his chair while I waited for the nurse. I talked to her for a minute and then she got the oxygen probe and put it on his finger. His O2 sat was 51%. She was convinced that it was wrong but got him to a bed right away. The one in the area he went to said it was 63%. The RT and ER dr came fairly quickly to see him. He was sleeping but really pulling with his head and body with every breath.
By 3 the ER dr said that they were going to have to intubate him and put him on a ventilator. By the time all the preparations were made, he was hardly breathing at all. As our local hospital is a small country hospital arrangements were made to transfer him to the Children's hospital in the city about an hour away. I had to quickly start making arrangements for our pets and get some things so I'd be able to stay with him at the other hospital. He was transferred by about 8 that night.
He was put into an isolation room on ICU as they didn't know what he had and his temp was high for him. He did well over night on the ventilator. The next morning (Thurs.) he was awake and really fighting the ventilator tube. Trevor was severely developmentally delayed and hated anything near or in his mouth. They took him off the ventilator around noon and put him on bipap. He did fairly well on that. The nurse told me that I could expect him to use bipap at night from then on. She also warned me that we would be in the hospital over Christmas in order to get all the equipment ordered and to be trained on how to use that. That was fine. I didn't care where we spent Christmas as long as we were together.
Around 7 I left him to get something to eat and call a few people (I couldn't use the cell phone in his room as there was no reception). When I came back I phoned in to get permission to enter and the person who answered put me on hold and then told me I could go in. As I got outside his room the nurse took me aside and told me that he had started having more trouble and that they'd had to increase the pressure settings on his bipap and he was on 100% oxygen-up from 30%. For the next several hours they worked hard to get him to settle down. Part of the problem was that he couldn't get a good seal on the mask and that he was fighting it. Around 11 he started to do better although he was still needing higher pressures. He was down to about 50% oxygen.
Friday morning I left him just after 8 to have a shower. Again, when I called in to get back in, they hesitated and then I was told that they weren't ready. Then I was told that a nurse would come and talk with me. He came out and told me that they'd had to reintubate Trevor as he'd suddenly stopped breathing due to a plug of some sort and that they'd had trouble with the intubation. He was alive but I couldn't see him as they were still working on him. I sat in the ICU waiting room absolutely terrified. After about 10 minutes the respirologist came into the room and asked the other person in the room to leave. I knew it couldn't be good. The dr proceeded to tell me that his heart hadn't handled the reintubation well and that they'd nearly lost him. He was being kept alive with adrenaline. The dr said that the time had come to make some decisions about Trevor's future. He said that there was almost no chance that he'd ever come off the ventilator again. He'd already failed one trial with bipap and likely would again. I knew his legal guardian was coming later in the morning so we agreed that we'd have a meeting when she got there. I was devastated. I couldn't believe what I was hearing. He'd been so healthy. Even Wednesday morning he was laughing and saying '"ove"(love) when watching the lights of the tree and Christmas scene. Now they were telling me there was no hope. I was made to wait close to an hour before I could see him.
When I was finally let in, I went over to him. He was still asleep from all the meds they'd used to get him stable. But I went and talked to him and said the chorus from his favorite book "Love You Forever"by Robert Munsch. "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be" Even though he was still asleep I could tell that he heard me and recognized it. He started responding and stirring right after that. I think he'd been waiting for me to come back.
We had a team meeting with the respirologist, nurse, his social worker and myself and some other people. We discussed all the options. As far as the dr was concerned the only way Trevor could continue to live for any time at all was if he was on a ventilator and had a tracheostomy. Trevor had had spinal surgery a year and a half earlier and before that his pediatrician and I had discussed what to do should something go wrong. We decided that he should be fully supported but that we would stop short of a tracheostomy. Bipap was ok. I told the dr that what I wanted for Trevor was for him to come home and go back to his room with all the lights and stuff that he liked and to go for walks to see the trains. He said there was almost no chance of that happening. But, as he had an infection there was a chance that once the infection had been treated that he could recover a bit. But that he'd be very fragile after that and be back in ICU again quickly. We decided that they'd support him on the ventilator for the weekend. We figured that they could likely try bipap again then and if it didn't work we would likely take him to Canuck Place which was a children's hospice near the hospital. They didn't know if he'd survive long enough off the ventilator to make the trip though. We agreed that we'd meet again over the weekend and the dr said he'd let the staff at CP know what was happening. Trevor had been going there for respite for years so they knew him well.
Within half an hour the staff from CP were there. We talked a lot. They told me that he could come there while still on the ventilator. A RT and nurse would come with him and stay until the tube was out. I wasn't sure if I wanted to do that or if I wanted to try the bipap in ICU first. I didn't want to feel I was giving up on him. We tentatively agreed that he'd be going to CP Monday morning but that we'd talk over the weekend. By that evening I knew that I couldn't see him suffer through the bipap again like he had on Thursday. I told the drs that I just wanted him to go to CP.
I started to call people to tell them that they needed to come and see him right away. He did fairly well all day on the ventilator He was awake all night, likely from the meds he'd been given to stablize his heart. Saturday morning I decided that until at least Monday morning, the dr was wrong and we were going to just enjoy our time together. I'd been thinking that I wanted to have a party for him at CP Monday but didn't know if he'd survive long enough after the tube came out. I mentioned this to the chaplain who had become our friend after Trevor's spinal surgery. She suggested we have the party Sunday in ICU. She quickly got permission to do it and we started to make arrangements. She brought in lights and other decorations as we decorated his room. We agreed that it would be at 4 pm Sunday.
Our pastor had been in in the afternoon and annointed Trevor with oil and prayed for him. His wife had given me a book about hope. Saturday evening once everyone had left I sat reading it and convincing myself that he was going to be ok. Around midnight though his breaths suddenly went down to 0 and alarms started to go off. His nurse was right at his bedside any ways and started to bag him. It was the same nurse who had been on Friday morning when everything happened. The RT came in to help her suction him right away and he was soon ok again. But, she said she had to tell me what had happened and what it meant. She pointed out that this is what had happened Friday and that his heart rate had dropped right away. This shouldn't have happened. I knew then that there was no hope.
He had one more episode during the night while I slept.
Sunday morning I got up knowing that it probably was the second to last day Trevor would have on earth. I spent most of the morning staring at him and crying. Once he was awake I did my best not to let him see any tears. Around 3:30 my friend Heather arrived and she stayed with Trevor so I could have a shower; I wasn't taking a shower unless someone was right with Trevor and could call my cell if he had any problems. He was ok.
At 4 we had person after person arrive for his party. We ended up with about 14 people who came. Many were people who had worked with him and came in on their day off to be with him. He was awake and alert the whole time and clearly interested in everything.
Just as people were arriving the dr from Canuck Place came. We left Trevor's room and talked about what would and wouldn't happen at CP the next day. We decided that having an oxygen mask on his face would be too hard for him. She said that they would give him a med to dry up his secretions so he wouldn't need to be suctioned. She told me that the ambulance would come get Trevor around 10 Monday. I tried to have hope but I was pretty sure by that time that he wouldn't survive and that he'd go pretty quickly after the tube came out.
People brought wonderful presents for him. It was so hard seeing them knowing he'd never use them. Everyone loved him so much. We took lots of pictures. Trevor seemed to love each gift. We ended his party by singing Christmas carols. We also had a time of prayer around his bed. It was a lovely day. I'm so glad we did it. I'm so glad I have a lot of pictures of it as well.
That afternoon the social worker and doctor asked me what I wanted to happen if he died. I decided that there wouldn't be a viewing. I found it too difficult when my daughter died 8 1/2 years ago. I decided that his party was his viewing. That's the way people should remember him.
As I read to him before bed that night I could see he was uncomfortable. Then he started to cry. I knew it was because he hated the tube so much. I told him that he would be going to CP in the morning and that then the tube would come out. It was so hard because I couldn't hold him close the way he loved when he needed comforting.
Monday morning I got up knowing it was his last day alive. He was sleeping peacefully. Around 9 the drs came in to talk to me about what was going to happen. I asked the respirologist if he was absolutely sure that this was the right decision. He said that he was convinced that it was and that the other respirologist had reviewed everything about Trevor and he agreed. He said the only way Trevor could continue to live would be on a ventilator with a trach. Just from the look in Trevor's eyes the last day I knew I couldn't do that to him. He said that he could send a bipap machine over to CP for us to try but I said no. I knew that wasn't right either. Trevor needed to be able to breathe on his own during the day. Everyone was so compassionate and caring as we got him ready to go to CP. The nurse coming with us was one that had been with us a few times in ICU so I was happy about that. The dr from CP said that the nurse that would be with us there was one I knew well. She'd actually been assigned to me the day after Kayda (http://kaydamarie.memory-of.com/about.aspx) died. It was nice to know there were familiar people with us.
I was on my own with him for a few minutes after we got to CP. I told him that the tube would come out and that he might be ok but he might have trouble breathing. If he did, the nurse would give him meds to keep him comfortable. I told him that he would go to sleep and when he woke up he would be being held by Jesus. His whole face lit up when I told him that. It was the only time he smiled all the time he had the tube.
The first thing I did when we got to CP was to put clothes on him. I'd brought his Canucks tshirt. We set up his gifts and lights so he could see them from his bed. He clearly wasn't happy with a picture of a frog on the wall so we took it down. We put up his lighted hockey figure on the wall along with other Canucks items (Canucks are our local professional hockey team and are big supporters of CP). He was happy to see everything. I had decided that I wanted us to sing the 3rd verse of Away in a Manger (Be near me Lord Jesus) before we took the tube out. They said the music therapist would come and play her guitar and sing with us. We had to wait for her to be free. After about 20 mins at CP Trevor started to cry. I think he thought the tube would come out as soon as we got there. I told him it would be soon and told everyone that we needed to sing and then get it out right away.
We took the tube out around 1:15. He was so happy. He started running his tongue around his mouth and clicking his tongue. You could see how relieved he was. After about 5 minutes he started to have trouble breathing. The nurse gave him something right away. I asked the others to leave at that time. For the next hour everything I had was focused on Trevor. I held him close the whole time. Most of the time I didn't have to even say anything to the nurse that he needed something more. She was right there the whole time. So, he was comfortable and not alone and knew he was loved. Once I realized that his time was almost up I had a couple of the people who had come with us come in to say goodbye. I'd forgotten about one person so after awhile of him getting weaker I said I thought maybe he was waiting to say goodbye to her. She came in. It was no more than 10 minutes later that his body finally gave up. As I watched him the words to a song I love called "Come to Jesus" kept going through my head. The last verse says: "And with your final heartbeat, kiss the world goodbye, go in peace and laugh on glory's side. Fly to Jesus, Fly to Jesus and live." I thought how now he was laughing and free. My heart was broken but it was for me and his absence not for him.
I'm relieved that he didn't have to go through illness after illness. We made a mould of my hand holding his afterwards. It's beautiful and I know I will treasure it forever.
CP took care of making calls to all the people who had to be notified. Right away calls kept coming in expressing sorrow over his death. His pediatrician called right away.
I had told the staff that I couldn't be there when they came to get him from the funeral home. Heather and I left around 4. At home I put the memory card from my camera into the new digital frame I'd gotten Trevor for Christmas and watched pictures that had been taken that day. I wasn't doing well so when his caregiver offered to come over I said yes. We sat and looked at his pictures and cried together.
Life since has been very painful and difficult. But, I have no doubts whatsoever that I made the right decision for Trevor. I'm surrounded by friends who care. I've been going through all his pictures and getting them onto the one memory card. That helps. I realized what a full life Trevor had. We did everything we wanted to do. I have no regrets about his life. We packed a lot of living into his 7 years and 9 months he lived with me.
Thanks to all sending messages and lighting candles. It means a lot.