I think most of us have taken our child to the doctor or emergency department of the hospital at one point for a serious illness (e.g. ear infection, rotavirus, broken limb maybe). I know I had been to the ED with Jack twice in his life once for pneumonia and once for a possible fracture. I had also been with Kate for a fall she had taken when she was infant, and for her first 2 episodes. But when your child is admitted to hospital for any length of time things go a little topsy turvy – it feels like time as you know it stands still and fast forwards at the same time. You are thrust into a medical environment with little to no support or knowledge, out of your comfort zone, getting little sleep, and in a state of constant worry. You wait patiently and for what seems to be an interminable amount of time waiting for information – any information. You eat bad food, don’t go to the bathroom or bathe because you don’t want to leave your child alone, and you talk to your family on the phone to ‘kiss’ you son goodnight.
To add to this, you must place huge amount of trust into a system, and in people that you don’t know anything about and have never met. It’s not like picking a contractor for your kitchen renovation, there is no vetting going on here, no proposal review – you get who you get and you better hope they are good, have had adequate sleep that week, and are willing to make the effort to spend time with you, and be willing to investigate and think hard about the not so easy case that your child is presenting them with.
Kate’s underlying disease (which we had no idea she had at the time) was clearly making itself known with episodes in July, September, and October. On November 8th (2008) Kate started to be unwell again, following the exact same pattern as the previous 3 times. Again, we tried to engage our family doctor so we would have a consistent person examining Kate – he was not available and could only speak with me by phone. A few days later, I called Dr.S the new pediatrician who had been following Kate and left a message for him asking to call. Later that day, we made the decision to head to CHEO.
This ED visit was different in tone and approach. Bloodwork was done for the first time, Kate was placed on IV hydration as she clearly dehydrated, and a urine sample was collected (looking for urinary tract infection) as had been done during previous ED visits. The team was looking for what we now know is called a focus – i.e. a reason for her being unwell. In the early morning hours of the following day (1 a.m./2 a.m.) I found myself giving an extensive history on Kate. I talked about Kate’s developmental delay, my suspicions and ongoing investigation into her hearing, GERD, feeding issues, fever, constant crying, inability to sleep, pain, lack of tone and that these were all highly exacerbated when she was sick and started to vomit. Based on preliminary test results, I was asked questions about Kate’s environment: was she exposed to lead (lead toxicity was suspected); aspirin; alcohol (alcohol??). The doctors were obviously looking at many possibilities and were repeating and expanding the scope of their bloodwork, and had ordered xrays of Kate’s abdomen to investigate her pain. The ED doctors decided they needed to admit Kate on November 12th.
The flurry of activity that happened around Kate once she was admitted to hospital was overwhelming. We met specialist after specialist: gastroenterology (GI), hematology, neurology, neurosurgery, metabolics etc . Kate was schedule for many diagnostic tests starting with an upper GI series, more bloodwork to further investigate her low hemoglobin and the possible cause, a scope to investigate her reflux/GERD, and a MRI. We talked to medical students, residents for the inpatient floor, residents for the specialists, attending physicians and specialists – and we repeated our story to them each and every time. It was physically and emotionally exhausting. We were scared and worried, and Kate was still so unwell, in obvious discomfort and highly irritable. We were working hard at being as informative and as cooperative as we possibly could. We felt Kate was in the right place – finally – and that this huge team of physicians was going to be able to help her. I would do anything I could to help them.
Hematology finally came to discuss Kate’s bloodwork with us. I have to say they seemed excited to discuss her case. They had never seen anything like Kate’s red blood cells in their lab. They were malformed (too big, too small, misshapen), they were unusually pale, and they had a dark rim with a dark spot in the middle. The hematologist had no idea what they were dealing with and asked both Brian and I for a blood sample for comparison with Kate. And Kate was scheduled for an osmotic fragility test.
Slowly a picture was starting to evolve about Kate and what was happening to her body from an undiagnosed condition. Areas of investigation included: lead poisoning, osmotic fragility, zinc deficiency, high ferritin (iron) levels, or a bacterial process. GI was considering that her extreme vomiting was reflux coinciding with a viral gastro type flu. In the meantime, our bloodwork had come back as normal and we were feeling more and more confused.
During that admission to CHEO, we also learned a valuable lesson. We had to be vigilant, ask questions and take nothing for granted. Doctors and nurses are busy – in some cases they are overworked. If you are a difficult case where no one knows what is going on, and you have the baby who is constantly crying, you may not be attended to as well.
Kate suffered a medical error during her admission to CHEO. In the world of medical error, it was minor, but the impact for us as her parents was significant and a lesson that we learned the hard way. Kate had had an IV in her arm for hydration for 4 days. IV’s are supposed to be checked regularly to be sure they are still in position and that there is no redness or swelling. This is usually done when vitals are taken, approximately every 4 hours. Kate spent a full day (8 hours) of IV hydration not being checked by a nurse, nor were her vitals taken during that time. Unbeknownst to us, Kate’s IV had become dislodged and was interstitial. Her little arm was inflated with 1 cup of fluid over a 6 hour period. Kate’s only way to alert us was to scream and cry in pain – but we thought this had to do with her irritability and did not investigate, instead we took turns trying to console her. A few hours later Kate appeared to ‘give up’ and became lethargic. I really started to sense something was wrong and I started looking at Kate all over, pulling her hospital shirt up, feeling her tummy, feeling her forehead for fever, and finally her little hand caught my attention. It looked like a baseball glove – completely swollen beyond recognition. As I pulled off her shirt and examined her arm, it was grossly swollen from her hand to her shoulder and into her chest. The skin was taut and shiny, and fluid blisters were forming at other puncture sites where blood had been taken from her. The doctor, nurses, and clinical nurse manager came rushing – the venous access nurse took us aside and counselled us that we should make a report on the situation, that she ‘had never seen anything like this’. We just wanted them to help her – to make the pain go away, which they couldn’t until the fluid was absorbed by her body.
It was a lesson for us. Not a good one – or a necessary one – it made us realize that it was up to us to be vigilant for Kate. We understood that we were her safety gatekeepers and couldn’t rely on others – no matter their medical credentials. Mistakes, oversight, and inattention happen and we were never going to let it happen again.
Kate’s arm did resolve slowly, it took about 24 hours. We continued to treat the blisters for several days after.
For me – in recounting and recalling Kate’s story – this hospitalization is where our journey really began.