So I am getting back to recounting Kate’s story to date. Here is the last post written a few months ago if you want to catch up on where I had left off.
Kate was admitted to hospital over the Labour Day weekend for severe dehydration due to cyclical vomiting and metabolic instability. She had started another episode as she typically has…fussy and irritable, refusing to eat or drink for a couple of days. Sleepless and crying constantly at night. Within a couple of days she started vomiting and we knew that we needed to take her to the hospital.
The emergency department was getting more efficient at triaging Kate and understanding that she had to be seen quickly, but also that she was very unpredictable and her status could change very quickly. After the large medical team meeting about Kate in the late spring of 2009 – following her PICU admission – her neurologist had written a letter giving some instruction as to how Kate should be managed when she presented at the emergency department based on previous experience. We had asked all the doctors in the room to compose such a letter. None offered as they all felt they could not accurately describe the entire medical complexity of Kate (ah coordination of care). Dr.D finally agreed after we tearfully explained the frustration of trying to get through the emergency department experience with Kate. The letter helped significantly with mobilizing the ER doctors and limited the ‘starting from scratch’ frustration that we were face with each time we walked through the emergency room doors.
The ER attending also paged Dr.C from metabolics who was keen to stay on top of Kate’s metabolic profile when she was acute with one of her episodes. One particular investigation was into porphobilinogen which would indicate the possibility of acute intermittent porphyria (which was a suspected condition). The test was negative, but would have to be repeated again during the next episode (porphyria has since been ruled out).
Kate’s admission was short in duration, and I would venture to say this episode was severe but seemed to resolve well and within a short time. Palliative care offered for Kate to transition to Rogers House for respite before she went home, but we just wanted to take her home.
As I think back to those days…to the first 3 years of Kate’s life…I can’t honestly understand how we did it. Our days were spent often with an unwell, lethargic and irritable toddler. She wanted to be rocked or held constantly, and for some reason her preferred position was on my right shoulder while standing. If I sat to rock her she would fuss and whine as if she was uncomfortable, so I spent hour after hour rocking her in my arms while standing. When she finally fell asleep I would sit in a chair and rock some more.
For the first three years of Kate’s life she did not sleep more than 2-3 hours at a time. She would wake and cry and fuss. She would sometimes settled after 20-30 minutes, or she would continue to fuss and whine. I would get up with her most of the time as Brian was working the next day, but I have to admit there were nights where I pretended not to hear her, and knowing he would get up (he couldn’t let her cry). We were exhausted beyond imagining. What most parents went through for the first few months with a newborn or infant, we were going through for years. And somehow we plowed through – because we had no choice. I can remember the night before Kate went to the intensive care unit for severe dehydration. I listened to her cry all night too exhausted to get up one more time. I listened to her dry heave and cry, too exhausted to know what to do or to think clearly. Man those were dark days.
The cycle of episodes were long. There was the decline – usually 3-5 days, the inevitable hospitalization of 3-7 days, and then home for 2+ weeks of recovering. During this time Kate was very high needs, not eating or drinking, lethargic, irritable, constantly crying. There was no break – for her or for us, and I was absolutely concerned about her quality of life and her future. We had to do something.
Slowly we were introduced to social work at CHEO and there was some hope that we might get some form of financial support or relief since I was now beyond my maternity leave and we were down to one income. Government applications for assistance were daunting and detailed and I did not have the stamina to sit down and work on them alone. Family support was non-existent other than when my mom would fly up when we were in crisis – but ongoing support and short periods of respite did not exist for us. We knew we needed help and we were scared at the fact that there was really nothing for us or Kate. I started to wonder how long we would both last at this pace and intensity.
After Kate’s Labour Day admission, we were sent yet again to meet with a dietician about Kate’s GI issues. Reflux (GERD) was still an issue for Kate and constipation was a chronic problem that sounds less than serious, but can cause a lot of problems for a young child. There was also concern about Kate’s size and weight – she was off the charts small and she had lost weight instead of gained it in recent months. We were managing the constipation with medication, but it was not doing a great job. We were also looking at supplementation for her diet – but when a toddler doesn’t want to eat, it really doesn’t matter what you try to introduce to them. In fact new food/supplements when a child is ‘off’ their diet or eating habits are not very well received. The dietician also asked us to restart a detailed food journal for Kate. We added this to our ‘to do’ list.
Conversations started happening about testing Kate for Crohn’s disease, Celiac and/or Colitis (all of which have since been negative) and as we prepared to go to the Mayo Clinic in October, we added GI (gastroentorology) to the list of specialists to consult with. Our concern was that we were stuck on symptom management or reacting to each crisis and not addressing the cause. Our neurologist and GI doctor had wanted to start Kate on a new medication called Flunarizine, another neurological blocker aimed at abating her episodes. We were skeptical, but in asking for help it is hard to say no when a medication is recommended. GI was also wanting to restart Prevacid for GERD – though we had found no difference with her off of the medication. You ask for help, you have to take it when it is offered…no? GI was also interested in doing an upper GI endoscopy on Kate and taking biopsies. The goal was to assess the reflux , look for inflammation, ulcers, gastritis, esophagitis and eosinophilic, and examine Kate structurally. We were unsure about this invasive test that required yet another anesthetic, and were beginning to express concern about the direction GI was taking with Kate. Our parent intuition was beginning to give us a sense that this was much more than GERD (reflux) and that something else was complicating it.
We were anxious for more. We wanted answers or a new direction for Kate’s care. We started preparing for our visit to the Mayo Clinic.