April 2021: chaos, anxiety and joy
April 1st brought with it an odd mix of anxiety and joy. We were excited to see that the Banatrol we had ordered arrived at the end of March, so by the morning of the 1st, it was added back to her feed. The anxiety I speak of came from a rather uncomfortable Zoom conversation I needed to have with her home care team regarding one of our nurses. This particular conversation was not the first or the last, but each one that followed was increasingly more uncomfortable than the previous one. At 11 am we began a long discussion about how things were going and what needed to change. It was an undesired but necessary conversation. By the end of it, I was feeling conflicted. Part of me was feeling hopeful, while the other part was scared that I would become disappointed again. Our nursing situation was not ideal, and with each passing month, it appeared to get worse. I found myself feeling anxious about how the month would go because Olivia had 18 appointments and meetings scheduled for April, so I crossed my fingers and hoped for the best.
April 20th, 2021
I spent the following 4 days doing my best to catch up on what I couldn’t accomplish in march, and before I knew it, the onslaught of appointments had begun. At 115 pm on the 6th, Olivia had her first neuromuscular appointment at the QA to get fitted for her AFO’s. On the 7th, she had a sleep-deprived EEG at the hospital. Considering that Olivia calls the shots on how much sleep she gets, it was not an easy feat to keep her awake. We did manage to make her more tired than usual, but when it came time for her to sleep during her test, she had no interest in complying. Although she didn’t fall asleep, she did happen to rest long enough for them to get a good reading of her brain. What they discovered was that she was having a lot of seizure-like activity in the left part of her brain (even though there were no physical symptoms). On the 8th, she had her last dose of probiotic, and we had a zoom meeting with her complex feeding team from BCCH to discuss a plan to help her sleep better at night. It involved slowly weaning away one of her overnight feeds by redistributing it to the other feeds over several weeks. Our plan didn’t go as we had hoped it would, but that turned out to be a good thing because we achieved our goal sooner than expected. During that zoom call, we learned that the blood work done on March 22nd indicated that her iron and levocarnitine levels were lower than ideal. Because of that, her levocarnitine supplement was restarted on the 10th and the iron on the 14th. On the 13th and the 14th, I had 2 separate zoom calls with the nursing support coordinator to continue our conversation on how things were going. On the 14th, we also had a second and final shift with a potential nurse (for which I only accept part responsibility for that person’s departure). I did my best to teach the new nurse about the complexities of Olivia’s care, but unfortunately, I was unavailable to train that person fully due to the two-day zoom call that occupied my time. I had trusted that our nurse at the time would be capable of stepping up to fill in my shoes… but that was not the case. After finishing up the zoom call on the second day, I was greeted by the sight of both nurses ignoring Olivia while sitting on the floor. One was reading a book while the other was playing with their phone. My heart sank deeper as my attempt to finish the orientation and answer any questions was met with the response, “I know everything I need to know.” In hindsight, I shouldn’t have been surprised at the outcome considering that the nurse doing the teaching (on a good day) barely accomplished the minimum job requirements. Our bad luck with nursing continued when our second new nurse had to take a leave of absence after working her 4th shift on the 15th (due to an unrelated injury). On the 16th, we met with the surgeon who placed her G-Tube to seek advice about her troublesome button. Since her insertion site looked healthy, he recommended that we try switching to a different brand because our previous 4 Nutriport buttons were defective. I had intended on researching our options of G-Tube brands when I got home, but instead, I hopped on a Zoom call with her metabolic doctor and forgot all about it.
April 22nd, 2021
This brings us to the 20th, a day that could easily be a story of its own. On our way home from a routine blood work appointment at the hospital, something unfortunate happened. Thankfully I had a nurse with me that day because if I was alone, I would have evolved into an incredibly awkward emotional mess. By now, you might be wondering what that unfortunate event was, so ill tell you (it’s not as bad as you might be thinking). We were almost home when I noticed a rather unpleasant smell coming from the back seat. I immediately knew that she had pooped, but I wasn’t fully prepared for what I was about to find. As I opened the back door and gazed upon Olivia sitting in a puddle of poop, I found myself momentarily stunned. I noticed that poop was leaking out of holes in the bottom of her car seat, so to prevent a further mess, I used the blanket from beneath the seat to cradle the whole unit (Olivia included) while I carried her into the house. I placed her on the tile floor in the middle of the living area and proceeded to carefully clear away the poop-covered items before rescuing her from the chair. Her nurse helped me lay her on top of a pee pad on the floor, and then we began the lengthy process of cleaning her up. After she was cleaned up and resting on the couch, I attempted to remove the cover of the car seat (I ended up struggling with the cover for longer than I would like to admit). From what I could see during my failed attempt to remove the cover, it looked bad. Not only was the cover soaked, but I would soon discover that the poop had leaked down into the internal components of the seat itself. I’m not exaggerating when I say that it was everywhere. I took a break from fighting with the seat to weigh out the pros and cons of my salvage mission. I concluded that it wasn’t worth my time and effort to save the chair, so I began searching online for its replacement. After going down a rabbit hole of car seats, I found one that happened to be exactly what we needed (plus, the cover was easily removable), so I rushed out to get it before our nurse went home for the day. After Chris came home from work, he decided to try his hand at cleaning the old car seat. He stubbornly fought with the chair for more than an hour before he was able to free it from the poop-soaked cover. Once the cover was off, there was no denying the fact that our old car seat was a goner. Not even a pressure washer could save that chair. But, for whatever reason, Chris washed the seat cover and straps even though, deep down, we both knew that it was about to be discarded. I found myself admiring my new purchase from outside the box. Normally I find it difficult to resist opening a new package or box, but I felt mentally and physically drained that day, so I decided to put it off. I had intended on assembling the new car seat by the weekend, but the universe had other plans. On the 22nd, we missed a Zoom appointment with her complex feeding team because her G-Tube button failed again, resulting in another trip to the hospital (but I’ll talk more about it in an upcoming post titled “Our last dance with Nutriport). In case you are wondering what the connection between the events of the 20th and the 22nd is, ill be explaining that also in the upcoming post.
April 29th, 2021
Although most of April was chaotic and stressful, it did manage to end well. Even with the drama of the disappearing nurses, our nursing situation was better than the previous few months. The saving grace was the fact that only 7 shifts were called in sick. On the 29th, Olivia had another neuromuscular appointment to pick up her AFO’s and get a final fitting. On the 30th, we met with one of Olivia’s social workers, who gave us a tour of her future Preschool and playground. While we were there, we got to meet one of the teachers, and some of the kids. That experience must have had a positive impact on her, because during her sleep that night, she let out a big belly laugh. It felt like the right decision to sign her up for preschool, so we gave the go-ahead for our social worker to enroll her. We knew it would be good for her developmentally to be around other children her age, but it was also a risky move because kids tend to be excellent at sharing sickness. For that reason, we were feeling excited and nervous about the idea of her going to school. Life was beginning to feel slightly normal again.
