Before I start where I left off in recounting for you ‘Kate’s Story’, I wanted to tell you about a really exciting event that happened last night. Remember when I told you special needs parents celebrate every and any milestone, no matter how small. This is because we wait so long for them and work so hard for them with our child. Some milestones are never reached, and there are times when you feel frustrated and wonder if that ‘connection’ to not even a typical milestone – but just one key part – will ever happen. For us, there are many examples of this frustration, but last night was an ‘a-ha’ moment.
Kate loves the tub – however, she can’t wear her ‘ears’ in the tub (clarification: we call her cochlear implants her ‘ears’). As a result, we end up doing a LOT of signing at tub/shower time. Last night Kate was signing what I thought was ‘dirty‘ over and over again. I was signing back, “Yes, you are dirty. Let’s get clean” over and over back to her. Then she picked up a toy from the tub and signed ‘dirty’. I finally clued in that she meant ‘frog‘ – which can look a lot like ‘dirty’ from a young child learning ASL.
Yes, I realize it is a green dinosaur…but it looks like a frog to her.
The pennies we had been dropping in the bucket for that task had finally paid off. (Kate’s AVT often refers to therapy as ‘pennies in the bucket’, i.e. someday they will pay off!). I was so excited I immediately emailed Kelly, Kate’s auditory verbal therapist – and included the picture.
Moments like that can make my heart just sing. 🙂
KATE’s STORY – PART 2
After Kate had seen the developmental pediatrician at the age of 9 months, she was referred to an infant development program at the Ottawa Children’s Treatment Centre and referred to occupational therapy, physiotherapy, and speech therapy. The OT first focussed on feeding with Kate as she was on solids, but having significant issues with feeding and what they thought was GERD. She engaged a dietician who would also work with Kate hoping to get her weight up and improve her growth. The PT focussed on Kate’s tone. Kate was hyptonic and as a result she was still ‘floppy’, she was not rolling over, she was not sitting, and she was very far from standing. As for speech, Kate was put on a waiting list.
There was a lot to absorb and to learn. I took the point with Kate medically. I have an affinity for all things medical. I find it interesting and that interest has really served me well. I also have a degree in exercise science and studies at the graduate level, so the terminology did not frighten me, nor was it always over my head.
I started to take notes and collect business cards. I started a small file with all the information/pamphlets/handouts/notes I was given, and I carried that with me to all appointments, so that I could answer questions about what the other therapists were doing.
Admist all of this – overlapping and coinciding with it all – Kate had her first ‘episode’.
We didn’t know it was an episode, the label we gave these bouts of acute illness came a little later. We knew Kate was unwell after 3 days of persistent vomiting, lethargy, and constant crying. Our family doctor examined her and felt she didn’t have anything specific. 7 days later, I took Kate to a walk in clinic as she was still unwell, crying, irritable and lethargic. We were on our way to visit my brother in Halifax and I wanted to be sure she did not have an ear infection. Kate continued to be unwell, but slowly recovering while we were there. In all, her episode lasted about 6 days. That was June 2008.
Since Kate’s first episode, she has had 27 more. After the 3rd or 4th, I started to keep track of them in a journal. My instinct was telling me that sometime, someone somewhere was going to need the information
Here is a typical entry:
Episode 2 – August 25 to September 5, 2008 – Duration: 11 days
- Kate started feeling unwell and was very lethargic during the day August 25th. That night she had a temperature of 38.5 and vomiting. Very significant lethargy/irritability (crying that could not be consoled). Seems to have spasms of pain that are not long in duration but cause her to cry harder for a short period. She is clearly uncomfortable. Kate was given Advil and Tylenol August 25, 26, 27, 28th.
- August 28th she was seen by our family doctor who examined her and recommended we go to CHEO.
- August 28th, Kate was seen by at CHEO Emerg. She was worked up for UTI (negative), blood work (which showed low haemoglobin at 85) and chest x-ray. The ED doctor diagnosed pneumonia and prescribed amoxicillin. *It is important to note that on our most recent visit to CHEO Emerg we were told that the chest x-ray was in fact negative for pneumonia (upon review by radiology) but we were not called as they do not follow up with negative results.
- August 28 we continued with Tylenol, Advil and Amoxicillin
- August 29, Kate continues to be very irritable, constantly crying and can’t be settled.
- August 30th, Kate is very irritable/still crying. *Important to note that I started Fer In Sol today after the haemoglobin report from CHEO.
- September 2nd, I took Kate back to our family doctor as we were concerned that she did not seem to be getting better. His examine did not show anything. He did mention her bloodwork from CHEO Emerg and that it should be followed up. He had not received the x-ray report from CHEO.
- September 3rd, Kate’s energy is better today, she is smiling. She is very gassy and burping and is passing black stool. She is sleeping a lot and is eating more. She now has energy to sit up for longer durations and her crying is stronger (more normal than weak sounding).
- September 5th, Kate is much improved though still weak.
Note: It would take another week to return back to her baseline.
I know many of you reading are parents. I am sure you can empathize with the stress, worry and frustration of having a constantly cying child – day and night. This was our life for the first 2.5 years of Kate’s life. After the first couple of episodes, even when Kate was ‘well’ she didn’t seem well. She lacked energy, she was highly irritable, she had constant issues with GERD and feeding was a significant problem. She was very small and undersized (in a worrisome way). And these episodes just kept happening.
Kate visited the emergency department in August, October and November 2008. Each time we met with a different triage nurse, a new resident (and sometimes medical student), and a new attending. Each time we waited 4-5 hours before being seen, only to be sent home with instructions to dose Kate with Tylenol and Advil.
In November 2008, things changed. I am not sure if it was the fact that they did bloodwork on Kate for the first time, or that they could see in her chart that she had very recently presented with the same condition at 2 previous emergency department visits. Whatever it was, things seemed to be taken more seriously.
I remember it was late evening when we arrived and even later when we were finally seen. I was exhausted and frustrated having just seen a locum doctor at our family doctor’s office. He had not seen Kate himself because he was too busy. We were seen by the replacement for his colleague who was on maternity leave. Our family doctor had been treating Kate for GERD (gastroesophageal reflux disorder) with a commonly used medication called Prevacid. I honestly saw no change in Kate and it was certainly not helping in dealing with her episodes. The replacement doctor examined Kate briefly and decided increasing her dose of Prevacid was what should be done. I can’t convey to you the absolute frustration I was feeling at my doctor at that time. Kate had had 3 acute illnesses in short time, she was unwell between the episodes with persistent crying and lethargy, she was seeing a development pediatrician for global developmental delay, she had engaged in OT and PT, and had a dietician, I had suspicions about her hearing that were finally waiting to be investigated, and she was very sick again. I had had enough. I knew Prevacid was not going to do a damn thing. And to make matters worse, the physician who had seen Kate most often and who should have known her the best wouldn’t even take a moment to briefly examine her and confer with his colleague. I knew taking her to CHEO was my best option and I knew I was going to be ‘clear’ with the doctors at CHEO that I truly felt something was wrong and needed close attention. I was determined to get us some help – and a little worried they might not hear me.