My son Owen is 3 years old. He started his regression at 10 months. At his 9-month checkup, I was told “he’s perfect and doing great.” There was never an indication of what was to come. Owen could talk, say Momma & Dadda, crawl, sit up, stand up, and was taking steps. Within 1 week’s time he had a major regression. He began to have seizures and wasn’t sitting up anymore. He also could still make noises, but he no longer was able to cry. We took him to Children’s Hospital ER in Omaha, NE where they did a CT scan. It was found that he had lesions on his basal ganglia and his brain stem. He was admitted for a week. Owen had several procedures done, starting with an MRI and lumbar puncture. He also had several blood tests, a urine test, and an EEG. The results from the MRI showed findings for a mitochondrial disorder favoring Leigh’s syndrome. We would have to send in a blood sample to do a DNA test for a complete diagnosis. He also had a swallow test – he failed. I’ll never forget watching the screen with each try he was unable swallow correctly. It was decided to place an NG tube for his feeding. Peaches, the last meal he ever ate – really peach yogurt- these are the things are filed away in my mind.
After being home with Owen for about 2 weeks we were back in the ER. Owen was dehydrated and throwing up a lot; another week-long hospital stay, this time over Halloween, so Owen spent his first Halloween in the hospital. He was the cutest little pumpkin. After his NG tube issues improved, we went home. We met with a surgeon that explained Owen needed a g-button placed immediately. He told us the NG tube in Owen’s nose was the equivalent of a garden hose being put down an adult’s nose. We scheduled the surgery. In between his last hospital stay and this surgery was Owen 1st birthday. He got to celebrate it at home with a fun monster party. Also celebrating with us, was his old brother Henry, who just turn 4.
Owen drastically improved after his g-button surgery. We took him to Hawaii just 1 week later. It was a trip planned before his regression, and we were encouraged to take him by the team at Children’s Hospital. We were in Hawaii for 11 days. Owen got to swim in the ocean and got to go to a luau that had fire dancers. It was an amazing trip. Our family had a wonderful vacation. Owen was well the entire time. We never thought he had any respiratory issues. We flew from Maui to Seattle on Dec 6th. Owen was fine on the flight. We had a 3-hour layover in the Seattle airport. Before boarding our flight, Owen had respiratory failure. I picked him up from his stroller and he went limp. EMT’s were called. He was only breathing 8 breaths per minute. He was intubated and given 2 bone IV’s. They cut his clothes off him. All of this occurring right in front of our gate. Our entire flight boarded, and our plane departed during this time. Henry, our 4-year-old, was standing watching his brother fight to breath. It was the most surreal moment of my life. The clarity of my memories of those moments seem to never fade. One child completely in distress and the other watching it all happen. These are the things that happen in the movies – it can’t be real…no it’s not happening to my family. But, it was real and it did happen. We took an ambulance to Seattle Children’s Hospital. They got him stable in the ER, then moved him to the PICU.
I always felt like Owen knew just where to fall apart at. Seattle Children’s Hospital is one of the top pediatric hospitals in the country. They even have a top neurologist that specializes in mitochondrial diseases and Leigh Syndrome. I stayed in Seattle with Owen. My best friend flew out and got Henry to take him back to Omaha. A few days later Dave flew home too. Dave flew back on the weekends to be with us. It was a challenging time for our family. What really helped is that our experience at Seattle Children’s was outstanding. They collaborated with Children’s Hospital in Omaha for Owen’s medical records and we were given tremendous support by everyone there. The doctors, nurses, RTs, child life specialists, the palliative care team really were all amazing in their own capacities. I really felt that everyone was extremely knowledgeable and wanted a positive outcome for Owen. It made being so far away from home a little easier for all of us.
Owen was intubated for 2 weeks, while they tried to ween him down to take the tube out. He was very sick with a virus. He wasn’t able to be taken off the tube because he has no reserve when he is sick. He would just wear himself out every day. We had a care conference and it was determined he would need a trach. On Dec 19th he had his tracheostomy. He did really well. He had his 1st trach change on Dec 24th. My husband & Henry flew from Omaha to Seattle for Christmas. We had a good Christmas in spite of not being at home. We also received Owen’s results from his DNA test while in Seattle. It was found that Owen has what is considered classic Leigh Syndrome and 5 other genetic missteps in his DNA. We hoped to do an AMR medical transfer flight the Wednesday after Christmas to go home. Unfortunately, the Omaha Children’s Hospital PICU was full and remained full until the following week. So, finally we were able to take a medical jet home. The Hand in Hand palliative care team for Children’s Hospital in Omaha was instrumental in our return. They welcomed Owen back into their care after his trach surgery was done in Seattle and suggested we learn his trach cares in Omaha, so we could be closer to home.
Once back in Omaha, Owen had excessive secretions, he filled up a 700 ml bucket in 24 hours. He also had a concerning seizure like episode. After, that he spent a month at Omaha Children’s Hospital on the respiratory floor. My husband and I trained on his trach cares in order to bring him home. During his time at Children’s Hospital, Owen was attentive with his eyes to us but didn’t fix on anything else. PT brought in a toy bar that was placed directly in front of him. Owen wasn’t responding to it at all. A pediatric ophthalmologist came and examined Owen he was diagnosed with cortical blindness. We had no idea how much Owen could see. We weren’t sure if he saw shadows or not. This made us even more determined to bring our son home. The support was amazing from the palliative care group, Hand in Hand, at Children’s Hospital. They supported us not only during our time at the hospital but they also continue to work with the VNA hospice team that now cares for Owen. We were told Owen would go home on a 6-month hospice. This was due to his rapid regression. We were fortunate enough to have a friend in the at-home nursing community to help us get nursing to bring Owen home. She reached out to her employees past and present, finding us enough nurses to get Owen released to come home. We are forever in her debt.
We reorganized his bedroom to accommodate all this new equipment. So many changes from the last time he was home. He now had a hospital bed, ventilator, oxygen tank, iv pole for his feeding tube, oximeter, and trach supplies… alot of trach supplies. We put 2 glider chairs in his room as this would become the new “”living room”” for all of us. His dresser now full of supplies and all his clothes removed and put in the closet. Oh, holy suction machine, that was an essential part of our day to day or really minute to minute contact with Owen. Six months at home came and went. We tried to prepare ourselves and our other son the best we could. We got several kids’ books about death and how to explain it to your child. Some were helpful. My husband and I had to visit funeral homes and make decisions about something so inconceivably heartbreaking that you run on auto pilot to get through it. Owen was doing PT and OT at home. He was pretty expressionless for the first couple months.
Then, one night while he was sleeping he started smiling. It was a huge change and a week after he started smiling and laughing out loud. His squeals of joy were welcomed with love and amazement. Owen then really began communicating with his eyes. He would blink his eyes for yes and turn his head or eyes to the side for no. This completely changed our interactions with him. We were able to ask him if he liked something or wanted to watch a certain show on TV. Owen’s VNA Hospice team worked together to adjust his medications. Since he was in Seattle he was on a scopolamine patch, this patch was to aid with his secretions. It was actually giving him eye issues- blurriness, making him more ridged, and affecting his facial expressions. Once he was off the scopolamine patch for a while, he was able to see the TV a little, smile, and move his arm slightly. It was so amazing to see how much more he could interact with us. Especially playing with his brother. With six months rolling into a year for Owen being at home. We felt very lucky. The expression “borrowed time” resonating more than ever before. People asking – is he getting better? or will he walk, talk, etc. It’s hard to be in a place where you have to continuously educate others about your child’s terminal illness. There is no date on the calendar for this event and it’s hard for people to understand. Some people think if he hasn’t passed yet, then he must be “better.” We just share how he is currently, but usually have to reiterate what a terminal illness is.
My husband and I made the decision to ensure Owen could have many life experiences. Since then we have taken him to several state parks. Owen loves to go on trails and see the river. We’ve taken him camping many times. He’s been to a farm, pumpkin patch, and the zoo each more than once. Owen loves swimming, playing the in snow, and petting animals. All of these things seem pretty ordinary, but for our little man it’s an incredible amount of work to get everything ready and for him to endure. To take Owen out you need his -pediatric wheelchair/stroller, portable ventilator, portable feeding pump, portable suction machine, back up batteries or cords to plug in, oximeter, oxygen tank, emergency trach bag, his burp cloths, extra bibs, positioning pillows and the list goes on. If we are going in our car you need 2 adults. One to drive and one to suction Owen. It can be overwhelming to say the very least, but it is worth it every single time. Being able to take him out and see how much he enjoys it is so rewarding for us. We covet these special family moments knowing how special each one is. By now, Owen had been home for an entire year plus. No hospital stays, largely due to the wonderful collaboration between the VNA hospice team and Owen’s stay at home nurses. To try and lessen Owen’s secretions, he began botox injections in his salivary glands about every 3 months. Each time he had to be put under for this procedure. The procedure was quick, he got shots into his salivary glands. We spent a few hours at the hospital each time and then came home. The botox injections helped a little but was not a great result nor was it a permanent solution.
Owen still continued to have large amounts of secretions and needed constant suctioning. During the summer of 2019, Owen became very ill. He had fevers, high heartrate, hives, he became extremely lethargic, had ramped up seizures, and his secretions increased significantly. He was sick for a couple months. This was the beginning of playing the “more regression” or just an illnesses game. You never want to see your child suffer through anything. Watching Owen with this illness on top of all the challenges he already faced was very unsettling. Guessing at the future is a daunting process and in Owen’s case it was continuously changing. Once Owen’s illness cleared up, the next week he was diagnosed with a staph & pseudomonas infections. So, the fun never ends. He was pretty sick for the next couple weeks but he finally overcame it. Poor little man!
He is certainly the strongest, happiest, most resilient little man I’ve ever known. Owen never complains or shows how badly he’s hurting. He has the brightest smile that put light in your heart. We love Owen beyond measure. There are no amount of words to describe the strength and adaptability Owen has. He brings a huge amount of joy to everyone that he meets. I keep a smile on my face for my little guy because he deserves it. He deserves the best life possible with the most love, happiness, and joy that we can give him. As his Mom, I feel that I owe him that and so much more. If I could reach up and pull every star out of the sky for him I would. Since I can’t do that – I smile and give him constant love. We snuggle a lot and I always make sure he knows that he is the best at snuggling and so loved. As Owen’s birthday was approaching in November, I tried not to worry. But what is a mother’s job if not worrying. Everything we’ve read and what doctors were saying is that Owen’s time would be limited. We felt extremely lucky to have had all the time up to this point with him. It’s like you are constantly looking over your shoulder or holding a ticking time bomb. So, again I smile for Owen. I want to give him all the love he’s given me.
Owen started preschool on his 3rd birthday. He has preschool at home. His teacher is amazing and he loves her. It is remarkable to see the level of engagement Owen has with his teacher. I didn’t think I’d get to see him start school so this was a momentous milestone for us to share. My baby boy turned 3 and started preschool all in one day and I got to be witness to it all. Again, these are the things that are filed away in my mind. One thing I wish I would have thought of sooner was that Owen needed glasses. He could see the TV from his bed but we didn’t know how well he could see it or not. It only occurred to me one day when Owen and I were playing and I put my glasses on him. He seemed a little more excited. After that, I scheduled an appointment with pediatric ophthalmologist. They were able to examine his eyes and tell that Owen has extremely blurry vision. The eye doctor said Owen can probably see the colors on the TV but not make anything out. He gave us a prescription for glasses. Owen got his glasses at the end of January 2020. He lit up when tried on his glasses for the first time. It was so thrilling to see his reaction to everything. You could tell he could see the TV now. My heart was bursting with joy knowing how life changing this was for Owen. I also had a mountain of guilt, why didn’t I think of this sooner! I was pretty hard on myself but it helped seeing his happiness. The first time we took him outside with his glasses was so delightful. There was a beauty in watching him look at everything with such wide-open eyes. It was like he was seeing the truth of the outdoors for the first time.
Moving forward in the uncertain times of 2020, my little man had surgery on his salivary glands. This was in February before everything went into lock down. He had 2 glands removed and 2 glands tied off. This was his best chance at reducing his secretions. It wasn’t a guaranteed that it would work at all but we were hopeful it could help. So, my husband and I made a quality of life decision for Owen. This was Owen 1st major surgery since he got his tracheotomy. The surgery was 2 1/2 hours and he had to stay overnight in the hospital. Owen’s surgery went really well and he was more alert than I thought he’d be afterwards. We were able to take him home the next morning. Overall, his secretions have significantly improved. I am so happy with the results and I know this such an improvement in his quality of life. The only negative from the surgery is that Owen got C-diff a month later. He was on a strong antibiotic that wiped his bacteria out. He started with diarrhea after the surgery. Then he was really sick for a little over 2 weeks. His stools were extremely loose and had an overpowering strong smell. Owen had to get a catheter placed during this, he wasn’t peeing on his own. We tried removing it once and he didn’t pee for over 16 hours. The catheter was placed again. After a month, we removed it so he could try to come off it again. This time was different, he was able to pee on his own. We were so excited that we had an impromptu dance party to celebrate his success. He’s been peeing on his own for a while now. It is so great!
I was playing the regression guessing game again so it was so incredible with hint of unbelievable to see him peeing on his own. We have always taken each day as it comes and we continue to do so. Trying to make the best for Owen every day. Whether it rains or shines, Owen deserves the world! We may not be able to give him exactly that ,but we do what can! Owen’s room has become the hub of our house. We spend a large amount of our family time together in his room. His brother Henry always wants to wrestle and have pillow fights with Owen. Their love has no bounds and knows no limits. It is the most sweet and perfect love I have ever witnessed. Henry certainly gets jealous of all the attention Owen receives. Definitely a balancing act to meet everyone needs.
In the end, what has helped us the most is the support we have gotten from so many people. Our family, friends, VNA Hospice, home nurses, PT, OT, Speech, RT, Hand in Hand palliative care team, teachers, and so many more – have all aided our family in numerous ways. All these groups have given us the ability to care for Owen in our home and ensure he has the best possible quality of life. We are truly appreciative to everyone for the love and support they have given not only to Owen but our entire family. Having a child that has gone from the most perfect blonde haired blue-eyed sweet baby boy to that same sweet boy having a devastating terminal illness that strips him of all of his essential functions- normal brain functions, head control, breathing, motor skills both gross and fine, sight, eating food, bathroom functions, energy reduction, has been an excruciating test of our family but it will not break us. Our love for one another keeps us strong. Are we perfect? Absolutely not! But, we continue to give our children life experiences that they deserve. Trying our best every day, but somedays are certainly better than others. Are we sad – extremely- but our children deserve more than sadness so we pick up the pieces of our broken picture of what we thought our lives would be like. We piece them together like a puzzle that doesn’t quite fit all the holes and some pieces might be missing but we make it work.
The picture that we make isn’t the same as the one that came on the box, but it the one that we made together as a family. It’s exhausting, stressful, unique, and beautiful all at the same time. Owen is our blonde haired blue-eyed sweet little boy and we want him to know he’s perfect in every way! Many people extended us praise for what we do day to day. They say “I could never do that.” I always say, “Thank you” and sometimes I verbalize my thoughts and other times I keep it in my mind but I always think or say “You would do it if it was your child, love knows no bound and has no conditions.” My children have shown me that.
The following I wrote Dec 2017 – 3 months into Owen’s regression. I never posted this for anyone to read. It rings true now more than ever. People often ask us “How are you doing” – Owen is 1st. We are beside ourselves with every emotion, every day. This has been our worst nightmare that we wouldn’t wish on anyone. We had hopes and dreams for Owen. Only to watch him grow and see it derailed, so quickly, in such a devastating way. From being able to hear your son say Momma & Dadda – to him not being able to cry as they poke and prod him like a pin cushion. Seeing little tears roll down his face and just hoping to like hell it doesn’t hurt him so bad. We wonder why, think how unfair, and are just trying make sense of it all.
We watch as our 4-year-old son gives unconditional love to his brother. We are torn up inside knowing that this is something neither one of them can understand. We are trying to be strong for both our boys. Honestly in the end none of that matters, what matters most is that in every moment we have Owen we are the luckiest parents in the world. Illness or not. He’s our little man that deserves the best and knowing he’s got such an amazing older brother keeps us going.
I’m not writing this for anyone to feel sorry for us. I just want everyone to understand what we are feeling. That when life presents you with something so challenging – you don’t have time hide under the covers. It’s not about how “you” or “we” are doing – you become numb to all of that. Because when you wake up, go throughout your day, go to sleep, or stay awake at night – it doesn’t matter. Owen is 1st. He is our focus so we give him all the LOVE and KISSES. To us it’s so important that he knows every moment how truly loved he his. We will be ok, we will make it through this. Owen is 1st!