Episode 11: An underestimated bug
I present to you the story of July 2021.
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On the 6th, we had a routine blood work appointment at the hospital at 1030 am. At the time, everything seemed well, so we went home to continue our week. Within a few days, we received a call from Olivia’s pediatrician asking us to come back to the hospital for some follow-up blood work, so on the 9th, we returned to the ward at 1030am. We found out that her blood work taken on the 6th showed a mild elevation of her CRP and lactate (CRP is often a marker for inflammation or infection). On the 9th, they ran her usual blood work, plus a blood culture and a urine analysis so they could rule out a hidden line infection. Olivia seemed to be healthy, with no visible signs of a cold or infection, so they sent her home while we waited for the test results to come back. Later that day, her doctor informed us that her usual blood work looked even better than it had on the 6th, so we breathed a sigh of relief for the night. However, by the following morning, we received an unexpected call that her blood culture was growing something. Her doctor wanted Olivia to come into the hospital that day for another blood culture and overnight observation, so at 330 pm, we arrived back at the hospital and checked into our room in the pediatric ward. The following day her blood culture was positive for Staphylococcus Epidermidis (a common skin bug). After discussing what would be the best course of action, the medical team that was working that weekend had decided that it wasn’t a concerning bug, so they sent us home at 4 pm on the 11th. Then, Olivia wasn’t showing any signs of sickness, so we trusted that the doctor’s assumption of her recovering on her own would be accurate. Before sending us home, they arranged for us to come back on the 13th to do follow-up blood work and cultures to ensure that the bacteria was not misbehaving. On the 14th, we had a zoom call with her neurologist at 10 am, and during that call, she decided that we should increase her Keppra, so we upped the dose that night. That same afternoon we got a call from her doctor saying that her blood culture had returned positive quicker than the previous ones. After a lengthy discussion with her team at BCCH, they decided that it would be in her best interest to bring her back to the hospital to run a course of antibiotics so we could save her IV line. So, at 6 pm, we returned to the pediatric ward at the hospital, luggage in hand, waiting to be shown into our room. Almost immediately after getting settled into our room, she began to show signs that the infection was bothering her. The fatigue, diarrhea, and vomiting had begun.
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Upon her arrival at the hospital, her medical team placed Olivia on a familiar routine of blood work, blood cultures, and three antibiotic doses every 24hrs. To help speed up her recovery, we reduced her physical activity and encouraged her to rest more frequently. We also switched out most of her water flushes with Pedialyte to compensate for her loss of fluid (due to the pausing of her TPN for meds and her frequent bowel movements). Within 24hrs, it was apparent that the antibiotics were affecting her digestive system and causing her overall discomfort. She continued to feel progressively worse until the morning of the 19th when things appeared to be taking a positive turn. Each day her blood cultures took longer to bring a positive result back, so we were starting to feel optimistic that we could save her Broviac line. On the 20th, we received the first indication that her treatment was no longer working when her most recent blood culture started growing bacteria faster than the previous one. We had hoped that her future cultures would take longer to return positive, but unfortunately, her cultures would grow slow one day and faster the next. On the 23rd, her medical team spoke with the team at BCCH, and they all agreed that the line needed to come out immediately. The Vancouver team wanted the procedure to happen at BCCH, but because I had complete faith in the Vic General surgical team and knew it was in our best interest to stay on the island, I fought to keep us at VGH. After some discussion, her team decided to side with us, and Olivia was permitted to stay at Vic General for her two surgical procedures. They placed her on the surgical slate for 1 pm on the 24th, so we began withholding her feeds (leaving her with only partial TPN and Pedialyte). Usually, the idea of Olivia fasting was terrifying, but not that time. Her medical team had assured us that we would have a simplified formulation of TPN ready for her surgery (because full TPN tends to collapse peripheral lines). After her surgery got bumped multiple times, we started to feel concerned as 5 pm arrived, and the special TPN wasn’t ready yet. Thankfully she was kept stable on a combination of Pedialyte and TPN, but, to no one’s surprise, as we waited for her surgery, we lost another peripheral line. At 930 pm, the porter arrived to bring us to the operating room, and just after 10 pm, her first surgery had begun. They removed her infected line and put in two peripheral lines so they could run a simplified version of her TPN, but unfortunately, the TPN wasn't ready to use until the 25th at 5 pm. Much like her previous surgeries, afterwards, she spent the night in PICU for close observation. On the morning of the 25th, while she was in PICU, one of her new peripheral lines failed and had to be replaced with a new one. Olivia’s medical team would often experience difficulties while attempting to place IVs because many of her tiny veins are scarred or have collapsed from all her previous needle pokes. Thankfully that morning, luck was in our favour, and they were able to place a new line with minimal effort. Olivia had recovered well from her surgery, so just before 3 pm, they wheeled her back into her room on the ward.
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If I had written the 26th as an episode of its own, I would have called it “A bloody mess” because that’s what it was. The day started with a bang or at least a kind of explosion. Olivia had what I like to call a Poonami (a massive poop explosion that behaves like a tsunami, consuming and destroying everything in its wake.) It weighed in around 567g (or at least what we could collect). Almost immediately after cleaning up the poo disaster, she vomited a large volume of blood, followed by a smaller amount a few minutes later. It would have been a more concerning situation if not for the fact that she seemed completely fine afterward. The bloody excitement did not stop there. During her daily blood work, they decided to do a finger poke to get the blood, but unfortunately, it worked too well. Blood flowed onto the bed, ourselves, and Olivia's IV arm board. The situation was slightly concerning at the time because Olivia was borderline anemic, but thankfully with enough pressure and patience, she clotted, and then the chaos subsided. Amongst all the craziness, we received the good news that she had passed the 48hr mark with a negative blood culture (the 48hr wait is a safety measure to prevent the new line from getting infected with the previous bug). Since we passed that mark, on the 27th, her team began to plan for her second surgery to place a new Broviac line. At 8 pm on the 28th, she went in for her second surgery, and by 10 pm, she was on her way back up to PICU for overnight observation. Her surgery was successful thanks to the careful planning around her procedure and her fluid balance. After an uneventful night and morning, her team prepared us to head back to our room on the ward. The PICU double doors swung open, and as we crossed the threshold, the phone in my back pocket began to ring. As we made our exit towards our room on the ward, the song I want to break free by Queen played us out. The nurses and I shared a moment of joy as we all realized the significance of that song playing at that specific time. It wasn’t planned and, under normal circumstances, highly unlikely to happen because I usually had my phone ringer set to silent. When I think about the odds of it happening again, it makes the moment even more special. I couldn’t have asked for a better way to celebrate our liberation from PICU.
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In the days that followed, Olivia recovered beautifully back on the ward as we waited for her antibiotics to finish their course. At 6 am on Aug 1st, she received her last dose of antibiotic, and by noon we were settled in back at home.
I wish I could have said that our hospital visit was smooth sailing, but unfortunately, that was not the case. We had faced many challenges over those 18 days, and after they removed the infected Broviac line, life did not get easier. In 4 days, we had 5 IV lines fail (number 4 failed 3 hours before she would receive her second surgery, and number 5 failed around 1130am the next day). Thankfully we got her new Broviac line in quickly because we were about to run out of good useable veins. Somehow through all the pokes, digestive issues, exhaustion and physical pain, Olivia had remained in good spirits. It also didn’t hurt that our overall experience was more positive than our prior admission. Over the last couple of years, we’ve learned that things can go sideways very quickly, so when we’re lucky enough to make it through a difficult situation in one piece, we consider that a win.
July 30th, 2021
