273 days
We had achieved a new personal record of the most consecutive stretch of days away from the hospital. 273 glorious days of laughter, cuddles, growth, and sleeping in our own beds. During that time, from December 20th, 2019, until September 18th, 2020, we faced some challenges and minor setbacks, but we saw a great amount of progress in Olivia’s growth and development. Before I get into what happened on the 273rd day of freedom, I would like to share with you what happened during our 9 months at home.
December 20th 2019: quality time with Auntie Jen
In the evening of our first night back at home, Olivia’s auntie Jen came by to spend some quality time with her while Chris and I attended his Christmas work party. Naturally, I felt uncomfortable leaving Olivia’s side so soon after coming home, but I knew she was in good hands. Olivia and Jen shared lots of laughs and cuddles while we were out, and by the time we came back home, she was sound asleep in her own bed. For the first time in a long time, we could breathe a sigh of relief, knowing that we were home again. In the few days leading up to Christmas, we spent most of our time relaxing and reinstating our usual routines.
December 25th, 2019: taking a break from the festivities
While in the hospital, we had decided that if we were lucky enough to be home for Christmas in 2019, we would stay home and keep our visits to a minimum. Our usual Christmas day tradition involved getting up way too early, trying to fit in our breakfast, and gift unwrapping before rushing off to the first family member’s house. The festivities didn’t stop there… we were always on a tight schedule of 3 houses at 2-3 hrs per house, plus Christmas dinner with our family on the property we lived on at the time. We would also be sleep deprived due to the last-minute gift wrapping and chocolate making, which would often keep us up till after 2 am the night before. By the end of the day, we would be exhausted and overfilled with delicious holiday food. Instead of following our normal traditions, in 2019, we asked our family to help us change things up a bit. We went to bed earlier, woke up later, attended only the family gathering that was held on our property (everyone else came to visit us), and we made a brief appearance at dinner. It felt weird breaking the traditions we had formed over the years, however, it was exactly what our family needed after a long exhausting 16 months.
Olivia sleeping (click photo to see each image)
The rest of December disappeared in the blink of an eye, and before we knew it was January. We had struggled our way through the last 11 days of December while we learned how to adjust to having no nursing help at home. In early January we were able to acquire nursing help, and once again we found ourselves learning how to adjust to the change in our home environment. Having nursing support in our home had made a huge difference in reducing our feeling of overwhelming stress. Because of the extra help, we were not only able to finally get caught up on regular daily activities, but we were also able to start taking better care of ourselves. By the end of January, we had finally felt like we had a good rhythm going on at home. Little did we know that life was about to be turned upside down during the first weekend of February.
Feb 12th, 2020: all settled in
It was the 1st of February, at a time that was so ungodly I don’t even remember the exact time. Olivia’s room was adjacent to ours, which meant that if she stirred during the night, I would be able to hear her. That particular morning, I woke up to the sound of her loudly pooping. Quite often, her poops were so massive and destructive that they would result in the entire bedding needing to be changed. Since I didn’t particularly enjoy bathing Olivia and remaking her bed in the middle of the night, I rushed over to her bed to strip away the blankets and assess the damage. I hadn’t turned on the lights in her room, but out of the corner of my eye, I noticed that the floor looked wet beneath her IV pole (where her TPN was hanging). I felt a sudden wave of panic rush over me as my first thought was that her TPN bag had somehow ruptured, pouring the liquid all over the carpet. I stepped toward the mess only to realize that what I thought was TPN, was actually a pool of water. That’s when it dawned on me that our suite was flooding. I rushed over to wake up Chris to show him what was going on. After assessing the damage, he ran outside to check on the sump pump. I cleaned up Olivia before bringing her and all her medical equipment over to our bed. We cuddled beneath the covers while we waited for Chris to come back. In the length of time, it took him to get the pump working and return to us (approximately 5 minutes), the flooding had spread to the rest of the house. He managed to stop the flooding while I did my best to soak up as much water as I could, but the damage was already done. By the 4th of February, we were told by our landlord that within a couple of days, it would no longer be safe for us to continue living there. We were informed that for the damage to be fixed, it would require us to be relocated. He had arranged for us to have our things put into storage, and he also offered to help us pack and move things. That afternoon we made a post on Facebook to explain our situation and ask our friends for help. Within 30 minutes, we had a new place to live and a team of people volunteering to help us pack, move items, and watch Olivia. We found ourselves overwhelmed with the generosity of others, and within 30 hrs of that post, we were settled into our new place. Because we had assumed that our relocation would only last a few months, we packed very lightly. We were not prepared for what was to come in the following months.
(click photo to see each image)
February disappeared quickly as we adjusted to the new place. Thankfully Olivia didn’t seem to be bothered by the change in scenery (which is probably the result of her constantly changing environment at the hospital). As march hit and covid began sweeping the world, we started to prepare for the inevitable lockdown. Chris took time off work, and the three of us stayed in hiding, hoping that things would settle down quickly. Unfortunately, not everyone took the pandemic as seriously as we did, and cases continued to climb. Weeks turned into months as we found new ways of keeping sane within our tiny suite. We both picked up new hobbies while also finding new ways to stay connected with our friends and family. We only took Olivia out of the house to bring her to scheduled appointments and to go for walks. During the next couple of months, Olivia made great progress in her physical, emotional, and mental development. We were actively working on weaning away one of her anti-seizure meds (phenobarbital), and as a result, she quickly became more cognitively aware of her environment. Over time her neck strength also became much stronger, and as a result, she was able to stand and sit with assistance. She showed interest in playing with multiple toys, and she also began to discover what her favorite books, movies, and songs were. She was given more medical equipment to help with her physiotherapy and speech development. She became more playful, curious, and mischievous. It was becoming obvious that she was transitioning mentally from a baby to a toddler. By the end of the summer, her progress had slowed down to a minimal but consistent pace. Chris had gone back to work after taking a couple of months off, and our nursing help had wavered greatly as the months passed by. Because of covid restrictions, we were finding it difficult to acquire enough nursing help, so life began to get more difficult again. Our situation did get a bit better, but there is still plenty of room for improvement.
(click photo to see each image)
By the beginning of September, we had weaned Olivia’s phenobarb down to half of what it was, and things were looking promising that we could actually get rid of it. She was no longer taking her morning dose, and we were about to start weaning her evening dose. Just before we were about to take the next step, Olivia had a seizure, so we decided to stop weaning as a precaution. Around the same time, Olivia also started having random episodes where she would wake up screaming a horrific scream I had never heard before. At the time, we didn’t know what was going on, and neither did anyone else. In the couple weeks that followed, she began to have more episodes of spaciness and her screaming episodes continued, however, they were becoming more random. In the couple of days leading up to September 18th, Olivia was starting to have more episodes of mild fatigue, but it didn’t seem overly alarming.
Sept 7th, 2020
This brings us to September 18th, 2020. We had invited over the only couple in our quarantine bubble for dinner. At approximately 5 pm, Olivia was showing signs of extreme fatigue. I tried everything in my power to keep her awake until her bedtime at 7 pm, but my efforts were futile. Something felt off, but I was hoping that she was just really tired. I assumed that she bested me in her efforts to go to bed early, so I attempted to settle her into bed while Chris and our two friends began cooking dinner. That was when things took a dark turn. Olivia would wake from her deep sleep to scream a horrific cry, which was immediately followed by vomiting up large amounts of secretions and bile. I placed her on her side in her crib while I prepared her glucometer. It appeared as if she was having a crisis, so I wanted to make sure that she wasn’t hypoglycemic. At first, I didn’t believe the results of the sugar check, so I tested her again. Her blood sugar was twice as high as her normal range. That was the moment that I knew we needed to bring her back to the hospital. We cut our dinner date short before food was even cooked, and with the help of our friends, we prepared Olivia and all the supplies we would need for another hospital visit. Fearing that Olivia was in crisis, I sat in the back seat of our car so I could closely monitor her while we drove to the Victoria General Hospital. Because of the new hospital COVID protocols and Olivia’s complex medical needs, I called the emergency department to warn them we were on our way. Just when we thought we were figuring out our child, she threw us another curveball. I’ll share with you what happened next in the following post (because that’s a story all on its own).
Sept 18th, 2020: 11:21pm
