I have been hesitant on sharing this for a while now, I’m really not sure where to begin, but I know sharing this story will be good, even if it only helps me. I do believe writing and keeping communication open is the key to moving forward in lots of situations we face in life. Many people have come forward with their own stories and I already feel so comforted.
Back in March 2017 we took a quick little trip to Ucluelet, BC. We went over there to look at beautiful vacant waterfront property that you can get for an amazing price, and well… we got to see less property and more hospital than we would have liked! We are currently in that same area travelling and I think we are more at peace about what happened to Levi. We are wanting to share our story. A big motivation to share his story is that we just got to attend the first ever Little Lion Hearts Camp which was put on by the BC Burn Fund for paediatric burn survivors and their families!Absolutely mesmerized by the fish the Ucluelet Aquarium the day before his injury.
It was early in the morning, Weston woke up at his usual 7 am, and I had just settled Levi back to sleep, he would usually be up 2-4 times in the night ( he was only 8.5 months old) I was running on empty every. single. day. I went to get up for the day and Doug said “go back to sleep, I’ll get up with him, you should sleep while Levi is sleeping”. So without any hesitation I did! Doug got Weston a morning show, his milk and flicked on the fireplace as the hotel was freezing cold. Levi woke up about 45 minutes later, Doug quickly grabbed him, whispered to me “just get some more rest I’ll make breakfast and take care of the boys”. How perfect does that morning sound when your a sleep deprived Mamma?? Well the next thing I hear is Doug yelling, I can honestly say I have never got out of bed faster, my heart was pounding, I can still hear the sound of Levi screaming, it was a scream I had never heard before, a scream I felt run thru my bones, a scream I will never ever forget. I ran out of the bedroom and straight to him. Doug just kept saying “It’s so bad, this is so bad” over and over again. His eyes were welling up. I had never seen him like this. I took one look at Levi’s hands and I knew it was bad, so bad. I grabbed Levi and saw his sweet little hands completely white, without even knowing what happened I knew it was a burn and I ran him to the bathroom and turned on cold water. I wished it was me. I wanted to make it all go away. Why did I sleep in? Why was our hotel this cold? Why the heck was that fireplace so hot? why !! why?? a million thoughts were running thru my head as well as so much adrenaline.
It only took a few seconds. Doug had placed Levi down in the kitchen near him with some toys, he turned for a few seconds to check on breakfast that he had been cooking on the stove. A few minutes before Levi woke up Doug had turned off the fire place as the place was nice and cozy. Levi was at the stage where he wanted to pull him self up with anything, so instinctively he used the hearth to stand up and then placed both of his hands on the glass of the gas fire place. Unfortunately Levi did not have the reaction time to pull his hands off given his age and developmental. Now I know everyone knows that a fireplace is meant to heat up a house.. but this one looked modern and new, and we just both assumed (and this is us looking back on it now because we never had a conversation about it prior to his accident) that it is something you don’t let a baby touch, yet not something you think can send you to the ER. Doug had turned it off, you would think that it may be warm but to cause a burn like his.. well it’s just devastating. Honestly it really doesn’t even matter now. Call it a mistake, an accident, call it what ever you want. The damage had been done. It happened so fast. Levi silentley crawled right over to that fireplace and placed both his hands on the glass, Doug heard him scream, ran over as fast as he could and helped him to remove his hands. At this point I was now awake from the screaming, panicked and adrenaline pumping. Like I had mentioned before I took his sweet little hands put them under cool running water for about fifteen minutes, we got in to the car as quick as we could. I brought a cold cloth to keep on his hands while we drove. It was about a half an hour drive to the nearest hospital, it felt like an eternity. We arrived at Tofino General Hospital after Weston throwing up in the car and Levi screaming the whole way, it really was the longest worst moments in our parenthood journey thus far. The cold cloth I had been holding on Levi’s hands was steaming hot, his face puffy and wet with tears. I ran him into the ER and I could barley get out what I wanted to say to the intake nurse, I just stood there fighting away tears and holding my screaming baby. We were seen by the Doctor and nurses right away. They put dressings on both of his hands, gave him Tyleonl and Advil, and explained that we must not let this wear off. The pain he was experiencing was excruciating. The Doctor also explained that we wouldn’t know how bad or to what degree his burns were until he got his next dressings put on in two days, he spoke very positively about how quickly young children heal, he figured Levi would be doing great in a couple weeks. We were told any hospital can help us with his next dressing changes. Off we went stunned and in shock that this happened on our little mini vacation. Witnessing Doug go thru his guilt was incredibly difficult. I just kept saying to him ‘this could happen to anyone’, ‘your an amazing father’, ‘his is going to be ok’, ‘we are going to get thru this together’, ‘this is why these things are called accidents!’ All these positive statements I was saying so freely, and I didn’t even know what we were in for.
So two days later, which by the way were the longest of days. Levi was very uncomfortable and basically he was crying if he wasn’t sleeping, he barely wanted to eat and only wanted someone to hold him. We did anything that would make him calm, anything for a smile or a glimmer in his eye, our hearts just felt so heavy for him. I got the boys ready to head to the hospital, my mother-in-law had mentioned I should take him to BC Children’s Hospital because they are the best there is, But I wanted to skip the 45 minute drive and take him to a closer hospital assuming that this was just going to be just a dressing change, maybe they would give us some sort of lotion, and instructions on how to do the dressings at home. But really I hadn’t seen his hands since the initial burn, I had no idea what to expect! We got to Delta Hospital and let me just say the staff there and volunteers were incredible and extremely helpful. The volunteer went to the cafeteria and purchased banana bread for Weston and got us some water. She also gave Wes a teddy bear and talked to him while I spoke with the Doctor. It was so helpful and I will never forget her kindness in those tough moments. The Doctor told me a nurse was going to take down his dressings and he would come look at his hands and then they would make a plan to re-dress them. So just like planned we took down his dressings the Dr. came back, took a look and then quickly left the room without saying a word. I sat there holding Levi as he screamed, his hands were now exposed and the nurse explained when the air touches them it really hurts. Wow! I couldn’t have been more wrong about the severity of his burns, I looked down at his little hands and I was shocked to see how big his blisters were. Each and every finger tip with blisters and each of his palms had the biggest blisters I have ever seen, both over an inch high. I just wanted to take away all his pain. When the Dr. returned he explained that we are better off heading to BC Children’s Hospital after all, (note to self listen to my mother in law !!) and that he had already spoke to the Plastics Resident Doctor, so they knew we were coming. Naturally I was beating myself up thinking why did I think we could just go to the nearest hospital?? Then it hit me and I was starting to realize that this was so much worse than we thought, the mom guilt, the unforeseen future of his hands, I fought the tears back hard, I was mad like really mad, that hotel saw us check in with two young children, there was no warning how hot that fireplace was.. were we oblivious? I was mad at the whole situation. Off we went to another emergency room. This would now be our third emergency room in three days. We ended up being at children’s for nine hours that day.
We waited a long time to see the Doctor but it was worth the wait, he was amazing and reassured me so much. The nurses were incredible and didn’t make me feel judged or put blame on Doug or myself as parents. I think it was obvious that we were doing enough of that ourselves. We decided it was best to sedate Levi to keep him calm while they removed the blisters and dead skin. The Doc told me that they don’t usually asses burns in a degree but more in a thickness, which they still couldn’t tell me fully as burns evolve and change so much from day to day and they like to do things conservatively with kids because they are so resilient. So here we were not knowing what we were in for. He briefly mentioned that we wouldn’t talk about skin grafting for another three weeks. We continued going to children’s every 2-3 days for dressing changes at the medical day unit, again the nurses were amazing and we had the same Dr we met in the ER follow along with us, again reassuring me each step of the way. He had so much care and compassion for our sweet Levi, I think some of that attributed to the fact that he also had a baby the same age.
Walks in the bog helped ease my mind, and the kiddos always thrive when outside. Levi loves walks and thru his burn injury he started to enjoy the stroller again. It helped him take his mind off of the pain and frustration of not being able to play.
We approached the dreaded three week mark, I could barely eat that day, I knew we wold be talking about skin grafting. Just like our instincts were telling us Levi did need to have the skin grafting surgery. I trusted the team of Plastics Doctors at BC Children’s in making the best decision for Levi. They had been consulting together and taking photos the whole time (which are far too graphic to show on here) There were some areas so deeply burned that they would A) take too long to heal by them selves B) they want to give him the best mobility/range chances he can have and C) aesthetically have the most normal looking hands. He also explained that Levi had Second degree burns that were full thickness. Because burns evolve over time they are very difficult to identify the severity at initial observation. Anyways, We then waited for the surgery time for Levi, sure enough within a couple days we got the call. Surprisingly enough I was still holding it together. Doug and I were in some ways kind of relieved that he would get the surgery and hopefully after he healed from it the worst would be behind us. It had been a long long three weeks.he amazed us at how he adapted in Those weeks not being able to use his hands.
He was always happy until it was time to change his dressings!
On April. 20th, 2017 Early in the morning he went in for his skin graft surgery. Withholding nursing your baby before he goes into surgery was hard, we enjoyed a big cuddle and he had a little snooze before heading into surgery. The protocol for children under one year of age is to go into the operating room without a parent, so I nervously handed him off, gave him a kiss, told him how much I loved him, Doug did the same. I was surprisingly holding it all together. At that time we had many phone calls, texts and e-mails from friends and family asking how Levi was that I think I was too distracted from what was really going on in the moment and barely had a clear moment to let it all sink in, the fact that my sweet 9 month old baby was having skin graft surgery!!
Seriously…the super small hospital gown?!! probably the cutest thing ever !!
Doug and I went for a walk around the hospital and nervously waited for the Doctor to come out. Two of the plastics Dr’s who preformed the surgery came to to show us pictures and explain his recovery and how it all went. Just like expected it went very well! We were so relieved. Shortly after that we got called in to see Levi. Then it hit me, it hit me really hard, there was my baby with huge plaster casts up past his elbows! That two hours we waited for him had felt like forever. I just wanted this to all go away. I just wanted to hold him forever. The guilt, the pain it was really hard to take. I climbed into his hospital bed, and held him, tears rolled down my face. Time felt like it froze for a moment. I remember thinking about all the years being in childcare and as a nanny and how I kept kids safe, it was surreal being in these shoes. I held my sweet sleepy baby, counting my lucky stars that we have this beautiful little boy in our lives. The rest of the night he was so sleepy and cuddly. It was a long draining day, our hearts were so heavy for him. We were so touched by the family and friends who cooked us meals, brought us flowers and coffees or who just listened.
This was also hard on Weston. Things were different in our house. I was unable to give the normal amount of play time to each child. Levi was crying often, he never let Myself or Doug put him down. Levi couldn’t entertain himself at all, as a result the TV was on way more than I would have liked. There were more tantrums, more tears and not just from the boys. Weston did show a very compassionate side and often would tell people that Levi burned his hands, and that he is getting better. He would openly explain that he touched the fire place, even at three years old he knew that Levi was hurt badly. But ultimately this was really affecting everyone in our house. I made a conscious effort to make sure Weston got lots of one on one time. On the nights Doug had to work and family couldn’t help we had our babysitter come over. It felt weird to pay a babysitter while I was home, but I needed the help.
This poster was in the burn clinic, brought tears to my eyes, to think about other children that have gone thru burns similar to Levi and much much worse. and of course it has butterflies all over it – which signify change and finding beauty in that, and for those who know me, know that I lost a very special boy I provided respite care for and have always found the butterfly to be his sign, and for years it has been my most favourite and cherished metaphor.
We went back to Children’s a week later to have Levi’s plaster casts removed this process was called a burn bath, again Levi was put under for the procedure, this time I got to go in with him along with a Child Life Specialist. The goal was to distract Levi from getting the IV. She was awesome, and in those moments a huge support for me. My great friend Tamara came with me that day, just having someone there was huge, I am so grateful to have her and her family in my life. Then shortly after that the Doctor came back in and started to explain what to expect with Levi’s recovery. She explained that the grafts are looking pretty good, but still need to take, if all goes well in the next weeks he will keep getting smaller dressings and eventually be fitted for gloves. This all sounded great, I was thinking wow maybe Doug is right, we will get those gloves soon and the rest is history. So I asked out of curiosity how long will he need to wear the gloves? I thought she would tell me a month, two months, then she said minimum a year!! what? It all hit me then, I stated to cry. What a day it had been. I felt like I had reached a boiling point, hasn’t my baby, my family been through enough?
Now fast forward to four weeks post surgery, Levi’s grafts settled in, it was the best news! Levi got fitted for splints to keep his hands in a straight position which would help his scars heal and he got his first pair of gloves. Initially he wore the splints all day and night then it went down to 12 hours (only at night) The gloves have took a while to get used to. We would take them on and off about 3-4 times a day for meals and massages. We learned how important it is to keep scars moisturized to help reduce the appearance and for overall healing. Levi learned to love having his hands massaged and would bring us the bottle of lotion and try to do it himself, over time we got a lot fast with gloves and Levi also figured out how to take them off but then would ask to have them put back on.
This photo above was the first time Levi had his hands free since his injury. I wish things just went back to normal but Levi had developed new ways of playing and getting around. He used his mouth to pick up objects and would crawl on his forearms. He also used his feet a lot. So for the full two hours his hands were free he didn’t pick up anything let along try to use them. It was a very bitter-sweet moment, The OT kept saying every day he will try and do more and more. My mom ensured me that just how he adjusted to living life without the use go his hands he will adjust back to using them. I was so worried. We still had lots more recovery ahead of us.
Levi tuckered out after yet another hospital trip!
I think his new splints felt pretty good! love his happy soul! The picture below is the first time at home Levi had his hands free. He didn’t understand or try to pick up any food, instead he just used his mouth. He kept moving his fingers and staring at them, honestly for about a good hour. Once he started using them about four days later he spent a good 45 minutes touching our vacuum cleaner. I literal had the biggest smile and tears streaming down my face, seeing him use his hands and exploring again with no pain.
Everyday is a reminder of his injury. Everyday I think about how fast it happened but time does help. It makes you realize that you never know what life is going to throw at you. I remember one of the plastics Dr’s saying don’t worry about the gloves, just think about how many diapers you change a day it will become a part of your life and you will get used to it. It’s true! We adapted to Levi’s care, that’s just what we had to do. People would stare at him, or make comments, Sometimes in a polite way other times in a rude way. People ask questions because they are curious. At first it really bothered me, I didn’t want to talk about it. I was too mad. Sometimes I would just ignore them or walk away. But now more than ever I want to advocate. It bothers me to know this injury is all too common, that it happens lots, we have met so many children facing the same treatments. I haven’t figured out how yet, but my advocacy for burns won’t be stopping here. There is so much work that can be done and it starts from talking about it.
One of out most treasured memories thru journey is that when you ask Levi for a kiss he shows you the palms of his hands, he knew at even a year old that his hands are different, he touches them often. Now as a three year old he talks about his scars, he knows they are different but he accepts them. He is strong, he can hang from the monkey bars, he can hold on to a swing, and he can give wicked high fives! He also has the most unique finger prints, so much so it may make him a stellar robber ( although I think he would prefer to be a ninja) I know we will look back on this and always know how hard this was but it really has made us all stronger, more patient and more aware. The amazing strong people we have met along the way will be forever friends. If Doug and I can get thru this I know that what ever life throws at us we will be fine. Please share this post if you can, the more people it reaches the more people will know about contact burns like this from fireplaces. Advocacy is huge! I wish we would have known. Not all fire places are created equal! The two in our last home didn’t get hot like this one did. Some manufacturers even give out free screens or you can purchase one for 100 dollars or less!
For more information on contributing and giving back please check out The Burn Fund
Thanks for those of you who read this. ❤️