Back and forth: the story of June & July 2021
June 2021 was essentially a more hopeful and less dramatic version of may, but July, on the other hand, had taken a somewhat unpredictable and unpleasant turn. In this post, ill give you the cliff notes introduction to what happened in July because that month is a story on its own. You can hear all about it in my next episode titled “An underestimated bug” (it’s a real doozy of a story.)
(click on the photo to see both images)
After we achieved our previous goal of shortening her feed length to 1hr, our next plan was to increase the feed volume from 120mls to 150mls. On the 28th of May, I designed a feed plan that would take six weeks to complete—starting on the 7th of June with a 5 ml increase, moving up to a 10 ml increase on the 21st, and finishing on July 5th with a 15 ml increase. Other than a temporary increase in her bowel movements after the feed adjustments, she tolerated the changes very well. At the end of the month, we decided to supplement her with some Pedialyte to compensate for her extra bowel movements. Before I jump into July, I’ll take a step back to share with you what happened in June.
(click photo to see each image)
On the 1st, we had a follow-up appointment with someone from her orthopedic team to check the fit of her AFOs (thankfully, they still fit perfectly). On the 17th, we had a virtual interview with a new nurse interested in joining our team. The interview went well, but I felt cautiously optimistic about the outcome because of our poor track record of acquiring new nurses. The hip surveillance team at BCCH had scheduled Olivia for a hip x-ray at noon on the 18th to check on the status of the decompensation of her hips. Because she has been unable to stand or walk on her own, it has been difficult for her to put enough weight into her hips to help them form properly, and as a result, her hips have begun to pop out of place. Her previous pelvic x-ray had shown that she would most likely need reconstructive surgery on both her hips, so we again found ourselves waiting nervously for the test results to come back.
That month we struggled to keep cool through one of the worst heat waves we had ever experienced. Although we were in a basement suite, some days, home felt like a literal oven. I’m sure that we would have cooked alive if it wasn’t for our oscillating fan. Two of the hottest days that month happened to be on the 27th and the 28th (which also happened to be the training shift days with our new nurse.) Because of the incredible heat in our suite, the group of us spent almost the entire day sitting on the floor in the path of the fan, trying to keep cool. We did our best to avoid doing anything that would work up a sweat, and because of that, I was worried that the new nurse would get the wrong impression about how much help we needed and decide to quit. I knew it was irrational to feel that way, but a seed of doubt was planted in my mind when we had a new nurse lose interest in helping us after an unpleasant training experience. This time it seemed different. Right away, it felt like a great fit with the new nurse, so naturally, I felt more anxious at the thought that it wouldn’t work out. Although the odds stacked against us, I decided to hold out hope that we would finally add another great nurse to our team before our only nurse went on maternity leave.
July 11th, 2021: The morning after our overnight stay at the hospital.
Now let’s talk about July (cue in ominous music).
July was great for about a week, and then it wasn’t. On the 2nd, we had our first official shift with our new nurse, and it went well. I finally felt like I could relax again, knowing that our family was about to get the help we desperately needed. After reaching our feed goal of 150mls on the 5th, we needed to restart Pedialyte for 24 hrs on the 6th due to an increase in her bowel movements. After returning home from the hospital for routine blood work on the 6th, we learned that Olivia had a mildly elevated CRP (a marker for inflammation) and a mildly elevated lactate. Out of precaution, we decided to book Olivia in for follow-up blood work on Friday the 9th to make sure she wasn't getting sick. That day we did a urine analysis, a blood culture, and her usual blood work. Later that day, her doctor informed us that most of her blood work looked even better than it was on the 6th, so we breathed a sigh of relief for the night. The following morning, we received a call that her blood culture had tested positive for something. Her pediatrician requested that we bring Olivia back to the hospital for more blood work and overnight observation. So we, unfortunately, found ourselves back in the hospital in the afternoon of the 10th. After her second blood culture came back positive for the same bug (Staphylococcus Epidermidis), the medical team that day discussed what they thought was the best course of action. At that time, they felt that the bug wasn't a threat, so they made the call to send us home at 4 pm on the 11th. After coming back on the 13th for follow-up blood work, we felt hopeful until the following morning when we received another call from her pediatrician. After speaking with her team at BCCH, they had come to an agreement that Olivia needed to be brought into the hospital ASAP to begin a course of antibiotics, so we prepared all of our supplies for a potentially lengthy stay at the hospital, and by 6 pm we were settled into our room on the ward. Olivia ended up staying in the hospital for the rest of July, but during that time, she had an additional appointment that wasn’t related to the infection. On the 19th, she had an EEG to see if her increased Keppra dose was helping her non-visible seizures. After looking at the results, they decided that the increase had no effect, so we started her on lamotrigine on the 26th. The story of her infection did not end on the 6th, but what happened in the following weeks will be available to read about in my upcoming post (An underestimated bug).
