Kidney shenanigans
The day was September 18th, 2020. While I sat in the back seat of our car, watching our daughter sleep, I couldn’t help but feel a strong sense of Deja Vu. It was dark and eerily quiet in the car. It wasn’t the first time I found my eyes glued to her while she lay unconscious and unresponsive in her car seat. Chris was focused on getting us to the hospital, while I was focused on her condition and the oximeter reading. Within 10 minutes of leaving our home, I was once again sitting before the ER receptionist. With my barely responsive child cradled in my arms, I clutched her emergency letter in my hand. We were worried, but things felt different this time. I would describe it as a high-functioning state of shock. Before July 18th, 2018, I had been through a variety of different traumatic experiences, but none would hold a candle to what I would experience that fateful day in 2018. What I learned from my previous experiences is that I persevere regardless of the circumstances, however, the trauma I experienced on July 18, 2018, was intensified by more than double. At times, things would seem dark. However, when I reflect upon her lengthy hospital stay, it is clear to me now that the purpose of the trauma we shared as a family was to make us stronger. Stronger as individuals and stronger as a family unit. That is why I can assume that this particular hospital visit felt much different than the previous 3. I wouldn’t say that we were desensitized by our experiences but rather strengthened by them. After a certain point, when everything that can go wrong does go wrong, all you can do is laugh or go mad…. we chose to laugh.
Sept 18th, 2020: 11:21pm
Our visit this time felt bitter-sweet with an undertone of shame and anxiety. It was bitter-sweet because of the familiar faces under unpleasant circumstances, however, the shame and anxiety came from my irrational fear of failure as a mother. Looking back now, it seems silly to feel shame for returning to the hospital after another short visit at home. I know now that it wasn’t possible to prevent this visit because Olivia’s disease is progressive, and what happened was merely the result of that. Much like her first hospital visit, we had no clue what was happening within her body. Olivia was presenting like she was in the midst of a metabolic crisis, however, all her usual blood work looked normal (except for a mildly elevated white blood cell count). She had started retaining urine in the early evening, and by the time she was admitted to the hospital, her bladder was quite full. They used an in and out catheter to help her drain her bladder and to take a sample. We also stopped her g-tube feeds and started her on extra IV fluids. Although she slept and had a fever for most of the 19th, she occasionally would wake up to cry out in pain. At 5 am on the 20th, Olivia woke up and began to slowly show signs that she was feeling a little bit better. Although she was interacting with us and playing with her ball, she still seemed off. She was weak, tired, occasionally spacey, and uncomfortable. Her vomiting and secretions seemed to slow down, so we felt it was the right time to restart her feeds at a slower than normal rate. We didn’t know it at the time, but that decision would help point us in the direction of the cause behind her situation.
Sept 20th, 2020
By the 21st, Olivia was starting to become more fatigued, and her bowels were starting to cause her more discomfort again. Aside from that, she was in good spirits and enjoyed the company of her hospital friends. Her daily blood work looked great again, so we decided to continue making adjustments to her fluids. She was starting to get puffy from all the extra fluid, so we jumped at the opportunity to make some changes. We decreased her IV fluids, increased her feeds, and at 3 pm removed the sodium bicarb from her g-tube formula (based upon the theory that the extended use of bicarb was causing the reflux). At that time, we didn’t have a good explanation for what had happened 3 days prior, only theories. We waited patiently for an answer from one of the many tests that had been run over the previous few days. Instead, our theories were getting eliminated one at a time.
Sept 21st, 2020
Olivia’s condition started to decline overnight. The 22nd was a day of ups and downs for our kiddo. Her fits of screaming out in pain had returned, and she also appeared to be in a lot of pain when she urinated. Once again, her blood work looked great… so, no answers there. That morning I had received a message from another TANGO2 mom. She had read our previous update on Facebook, and in doing so, she found many similarities between what Olivia was experiencing and what two of her three children had been through. When her two kids were around Olivia’s age, they had experienced kidney stones, and their symptoms were identical to Olivia’s. Armed with this new information, I convinced the doctors to run more urine and blood tests, as well as a bladder and kidneys ultrasound. She managed to get her ultrasound at 10 am on the 23rd, and in the early afternoon, she got more blood work done. She continued to retain urine throughout the day, and by the late evening, her bladder had become swollen again. Her ultrasound and blood work looked good, but unfortunately, she still wasn’t able to empty her bladder, so they decided to put in a catheter at 9 pm for a 24hr collection test. The sample they took that night looked cloudy, but the sample from the morning of the 24th looked clear, so they decided to remove her catheter in the afternoon. Unfortunately, she started to retain urine, and by bedtime, she was feeling uncomfortable again. The mornings’ blood work had also indicated that her bicarb level was dropping, so at 1 pm, we decided to put the bicarb back into her formula. Her situation didn’t improve overnight, and by morning she was feeling worse. On the morning of the 25th, they ran the routine blood work and another urine analysis. Her blood looked fine, however, her urine was growing multiple bacterial cultures, as well as calcium oxalate crystals. Her medical team had decided to start her on a 3-day course of antibiotics, and to also get a CT scan of her bladder and kidneys. It appears that most likely during the last catheter insertion, she received a UTI (because in typical Olivia fashion… one problem is never interesting enough). That night they decided to restart a new 24hr urine collection… so, once again they put a late-night catheter in, however, things didn’t go as planned (because of course, they didn’t). It appeared as if half of the urine she was excreting was bypassing the catheter and going into her diaper. At that time, we didn’t know why it was bypassing… but we were about to find out.
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Olivia had more blood work done in the early morning of the 26th, and just before noon, they did the CT scan of her bladder and kidneys. She found her CT scan to be very amusing (she was even allowed to play with her ball during the test). Her blood work looked fine and there were no signs of kidney stones, however, something looked off about her CT scan. That was the day I learned that my understanding of the female anatomy wasn’t as great as I had previously thought it was. Apparently, in young girls, it is really easy to accidentally place a catheter in the vagina rather than the urethra. So you can imagine our shock when we got a call saying that Olivia's catheter was in the wrong place. We were in denial about the results because a reasonable amount of urine was passing through the catheter, so we consulted the urologist on call to help us troubleshoot. We didn’t have much luck trying to resolve the issue on our own, so the urologist came by to help. She took one look and confirmed that the catheter was indeed in her vagina. It appears that because she was spending more time lying on her back, the urine was pooling in her vagina before traveling down the catheter. After the doctor placed the catheter in the correct place, Olivia was a lot more comfortable, and there was no more bypassing, They had decided that since the catheter needed to be replaced, the 24 hr collection test would also need to be restarted. Olivia’s g-tube feeds carried on unchanged at a slow pace. She made gradual improvements over the next couple of days, and her blood work reflected that. Her urine had progressed from having calcium oxalate crystals to just lots of calcium in it. Things appeared to be moving in the right direction, so on the 28th, we decided to replace her food with one that didn’t have high oxalate foods in it. We also started giving her more water through her g-tube. Her 24hr urine collection had ended, and so did her short course of antibiotics. By the 29th, her results from the most recent urine culture had come back. It appeared that she was growing bacteria in her bladder, so we put her back on a 7-day course of antibiotics. The first couple of days of antibiotics took a toll on her gut, and as a result, she was experiencing a lot of cramping and diarrhea. On the 2nd, we removed her catheter and changed her antibiotic schedule to help her get more sleep during the night (which seemed to help a bit). Her blood work on the 3rd was showing an increase in her lactate, so as a precaution, we restarted her extra IV fluid. Her morning urine test came back clear of bacteria, however, we continued with the rest of her antibiotic treatment (just to make sure it didn’t come back). By the morning of the 4th, her lactate had come back down to normal, and she was looking better, so we discontinued the extra IV fluid. We had started preparing to go home on the 5th, however, Olivia wasn’t ready to go home yet. She seemed a little uncomfortable overnight, and by morning she was pale, lethargic, and the vomiting spells had returned. Her lactate had also come up a bit, so we restarted the extra IV fluid again. In the early afternoon, she woke from her lethargy spell to have a series of poops. As the day progressed, she started to feel more normal, however, her evening bloodwork showed that her lactate had come up even higher than it was in the morning. By the morning of the 6th, she was feeling much better. Her lactate had come back down to normal, so we decided to stop her extra IV fluids at 11 am. If she behaved herself over the next 24 hrs, then we would get to be reunited as a family once again.
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Our discharge date had arrived, and thankfully Olivia was feeling much better (her morning blood work also confirmed that). She had her last dose of antibiotics, and once everything was organized and she was ready to go, Olivia and I headed on our way. At 230pm on the 7th, we said goodbye to some of her hospital friends, and by 330pm, we were settled in back at home. Olivia was really excited when we got out of the car, and she realized where we were. It appears we weren’t the only ones who missed being home. For the first time in over 3 weeks, Olivia got to have a really good cuddle with her daddy. After a couple of days back at home, we were beginning to feel settled in with the new changes to our daughters’ care. By the doctors’ request, we returned to the hospital on the 9th for some follow-up bloodwork, and thankfully everything looked great. Once we had enough information from this hospital stay, we were able to conclude that what brought her in on Sept 18th was kidney stones. By the time we knew what to look for, she had already passed them, however, what was left behind was the evidence of their existence.
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A subject that I haven’t really touched on yet is how being in the hospital during a pandemic affected us. Our previous experiences had been welcoming and positive, however, during this hospital stay, we felt very isolated and unwelcome. The visitation rules prevented the three of us from spending any amount of time together, and when we would manage to get together, it was always short-lived or from a distance. I was isolated with Olivia in her hospital room, and as a result, my access to respite help was extremely limited (which meant I wasn’t able to properly take care of myself). By the end of the 3rd week, I was feeling extremely lonely, sleep-deprived, and unkempt. My access to the medical team was also greatly reduced, and as a result, I felt in the dark about certain aspects of her medical care. If our visit was a short one, or if our daughters' case was less complex, our situation may not have seemed as bad (but that was not the case). Even though this hospital stay was shorter, and the reason behind our visit was less traumatic in comparison to the previous ones, it took a much harder toll on our mental health. We have since bounced back from it, however, the fear of another hospital visit during the pandemic is very real.
