Kate’s Story – Coping

The next few months after Kate’s discharge from hospital in November 2008 were filled with therapy visits, clinic visits with specialists, and follow up tests. At home we were still dealing with recovery and a sleepless child. Kate slept about 1-2 hours at a time, waking often, crying a lot, and having a very difficult time settling. The theory was that she was having nighttime reflux from her GERD. There were several techniques recommended: positioning her head higher than her body- which we did by propping her crib mattress up at one end; avoiding feeding her too close to bedtime; ensuring she was getting gas out by burping her and rubbing her back often; trying medications such as melatonin to help regulate her sleep patterns – and increasing her dose of Prevacid. The crying and fussing went into the day as well, and I spent many days in a chair in our living room rocking Kate and gazing out the window waiting for Brian to get home (counting down the minutes). Those were dark days – difficult.

As I write Kate’s story and reflect back on my journals and notes, it is not difficult to remember how hard those days were. But what I can’t seem to conjure up is the emotion that I remember I felt at the time. The incredible stress of sleeping only a few hours a night, of listening to her cry and knowing she was uncomfortable, to feel so helpless in finding a means to ease her discomfort. Days and weeks spent pacing the house, walking with her in the stroller, pacing the house again and not knowing what I could do to help her feel better. Worrying about new medical conditions and tests that would take months to bear results. The fear and worry and intense stress that dominated our home life. Those emotions don’t come flooding back, it is something that is missing from Kate’s story, and I recognize that as a survival mechanism.

‘They’ often say that women don’t remember childbirth for a reason – because if we remembered all that pain and discomfort, the human race may not exist. (Who in their right mind does that more than once?). I think it is the same with trauma with a chronically unwell child. It is a traumatic situation to deal with  a medically complex and fragile child. Trauma is described as, an emotional wound or shock that creates substantial, lasting damage to the psychological development of a person, often leading to neurosis.  I don’t think I’ve reached the neurotic part yet, but I have certainly experienced a panic attack or two, and I have experienced events with Kate that have caused great distress and disruption. So I guess I choose the word trauma as the best way to describe what we have gone through with Kate so far.

I can recall most of it with the help of my notes. What details I don’t remember, I’ll often be surprised by being reminded by friends or familiy of specific Kate stories. They will recall details that I just don’t remember or had forgotten. Often you can’t even come close to recalling the intense emotional and physical stress of many days. I think it is a survival mechanism. It is what allows you to carry and on and move forward. When people say to me, “I don’t know how you do it?”, I think my answer is I don’t really know either, but there is a basic and innate human instinct that let’s things fade away so that you are not loaded with that emotion and trauma until you can’t handle it anymore. There is always a ‘fade’ rrom the previous traumas that allows for you to handle more. It is pretty incredible.

I think it also explains my 5 minute memory. Honestly, my retention for information that by mind/brain might not catalogue as ‘Kate Urgent/Important’ is almost nil. Details, people, events, and conversations enter a sieve in my brain and don’t stick. It wasn’t the case before Kate – but I think it is understanble and most people in my life get it (and laugh about it in a nice way).

Certainly the description of the emotions and feelings that traumatized people experience makes sense to me. I have travelled back and forth through all of these emotions for more than 4 years now:

Frightened …. that the same thing will happen again, or that you might lose control of your feelings and break down

This is day to day for me. I worry about Kate constantly. Constantly. I am always watchful of her behaviour; is she tired? is she walking well – is her foot dragging more than usual? is she pale? is she irritable? has she eaten enough? is that a cold? does she feel warm? When she does have an episode I am frightened as to what might be different and if she will get through the episode well. Being scared and worried (which I use to better describe ‘frightened’ for me personally) is a pretty constant state. I spend a lot of emotional time here.

Helpless …. vulnerable and overwhelmed. Helpless to help Kate and to prevent what was/is happening to her

I have felt helpless.  I counter it by taking charge, asking questions, researching, and finding moments where I can DO something. Helpless is not where I spend my emotional time

Angry …. about what has happened

Yes. More in future posts.

Guilty ….. feeling that you could have done something to prevent it. That I could have done more/faster/sooner/better

Doesn’t every parent have a natural state of guilt. “Am I doing enough for my child? Am I doing it right? Could I be doing more, or doing it better?”. The guilt for special needs parents, for parents with a medically complex and fragile child brings this to a whole new level. The state of guilt for us is pretty much constant and is countered by us doing anything and everything we can for our child every moment of every day.

Sad ….

Of course.

Ashamed or embarrassed …. that you have these strong feelings you can’t control, especially if you need others to support you

Um, yes. Somedays I can’t believe I have shared what I have on this blog. Please don’t think I am an angry, sad, emotional mess. All is well. (Thank you for everything, all of you.)

Relieved …. that the danger is over

I go through this in waves. When Kate comes through an episode. When a test result comes back and is ‘negative’. When we think she is ‘going down’ and then seems to recover on her own at home. Relief is a oft visited emotion. Together, Relief and Fear are a crazy rollercoaster.

Hopeful …. that your life will return to normal. People can start to feel more positive about things quite soon after a trauma.

I do have hope. I am not sure what ‘normal’ is. Returning to normal is not an option for us.

December and January 2008 were spent attending physiotherapy appointments with Kate to help engage her hypotonic body in more typical gross motor skills. We worked on sitting, rolling, crawling, standing and talked at length about equipment to use at home to help facilitate Kate’s motor skills, and positioning techniques. Kate was not crawling but doing a sort of one legged scoot across the floor. She relied heavily on the left side of her body for support and one technique was to use obstacles to make her engage her right side more. Kate and I visited the physiotherapists every 1-2 weeks. (Hope)

Occupational therapy at the children’s treatment centre had also begun for Kate. She had been accelerated off of the waiting list and we were able to let go of the private therapist we had been paying for. OT set up strategies and plans to work on developmental skills that are more fine motor in nature and also cognitively appropriate for the child’s developmental age. I found OT very frustrating in the early days. I was determined to be a good mom be sure Kate engaged in the sessions, but in the first year or so, Kate really disliked the approach to OT and often cried for most of the hour we were there. As I look back now, I wonder how much we were pushing something she just wasn’t ready to do, and how much stress we were putting her through. (Guilt)

Audiology had assigned Kate an auditory verbal therapist (AVT) since her BERA had shown moderate to profound hearing loss. This was our first meeting with KR, Kate’s much love AVT, and the person who I would say knows Kate the best in the medical/therapeutic field. She is a much trusted therapist, friend and advisor to our family and you’ll read more about her in future posts. This first meeting was really an opportunity to have the entire team meet, including Kate’s incredible audiologists, to review her hearing test results and discuss the plan moving forward.  We discussed the type of hearing aids Kate would have, and picked a cute pink pair for her. An impression of Kate’s ear would need to be made for her earmolds and we were put in touch with a hearing aid company to have that done. We were educated about audiograms and how to read them. We were being prepared to move forward into a new world of hearing with Kate, despite feeling so many emotions. I am still grateful to the ladies on this team for their gentle and firm hand in moving us forward on accepting Kate’s hearing loss and refocusing on how to best help her hear. (Hopeful, Relieved, Sad, Angry)

Occupational Therapy specializing in feeding was not going as well. Kate’s eating habits were inconsistent and challenging. She was still nursing, which could best be describe as messy. She had difficulty swallowing food and a session of eating solid food could take hours. Kate was eating very little and we were painstakingly tracking everything she put in her mouth to ensure she was getting even close to the number of calories needed. GERD was clearly an issue as was her hyptonia that was thought to be affecting her oral/motor skills of moving food in her mouth, chewing and swallowing. (Frustrated)

December 5, 2008 Kate had another episode. It started with constant crying, and what the doctors had come to call ‘irritability’. We adopted this term as well, but as I look back now I know that Kate was in a lot of discomfort and often in pain. I feel a lot of guilt about not pushing back about calling this physical distress my child was in something as simple as ‘irritability’ and have come to learn a lot about pain in young children. We called Kate’s GI doctor as we thought Kate’s GERD might be part of what was going on. We considered taking Kate to the emergency department as had been discussed with Dr.C during Kate’s November admission. Finally we decided we would manage things at home with Kate for as long as we could as she was not vomiting. We stayed in touch with her pediatrician and the family doctor and ‘rode out’ the episode for the next 6 days. We know now how hard this must have been on Kate. (Angry, Guilt)


Kate’s Story – Reprise

After reviewing my post last night, I went into my Kate file (a large filing box in the basement) and pulled out the journal I started after her first visit with the developmental pediatrician in July 2008. I am so thankful I have these notes. Not for the nostalgia, but to remind myself of the ‘story’ and everything we went through in the early days – and are still going through. As I read these notes I wanted to clarify a few things that I wrote in my last post and add a bit more detail.

  • Kate was being followed by a neurosurgeon at CHEO because of a head injury she suffered from fall. When she was examined it was noted that previous bloodwork showed a very low blood hemaglobin level (68 – normal is between 110-160). This was never investigated or followed up with by our family doctor – but it did become an important issue later on for Kate. It was in fact the developmental pediatrician who referrred Kate to hematology in September 2008 for follow up about her bloodwork.
  • Both the developmental pediatrican and the neurosurgeon were interested in doing an MRI on Kate due to her non-specific global developmental delay and sacral dimple that was appreciated during an exam.
  • During our first appointment with the developmental pediatrican, a social worker from the Ottawa Children’s Treatment Centre was present. She was there to help facilitate engaging the appropriate therapists for Kate. Suffice it to say whe was less than helpful, and being who I am, I quickly took the lead and took matters into my own hands. When I look back, Kate was initially on waiting lists for everything – including an Infant Development Worker. This worker never appeared – likely because by the time Kate was at the top of the waiting list she was no longer an infant. Because of the significant wait list for OT – which we really needed – I searched for someone privately and hired her to work with us immediately.
  • After that second hospital visit to CHEO, when we were sent home with a possible diagnosis for pneumonia that turned out to be false, Kate was not recovering well. We waited several days and finally returned to our family doctor for help. I was bit more insistent that Kate was unwell and we needed help, perhaps from a pediatrician. He disagreed wanting more information before taking any ‘next steps’.  Not to belabour the point – but there are multiple notes about our doctor ‘not being on top of things’ and me constantly communicating and asking for help. As I read, the feelings of frustration and anger surface again. We should have never been in the position we were left in to be the sole medical advocates for our child.
  • It finally came to me to find a pediatrician for Kate, and we are so lucky to have found Dr.S now who specializes in children with chronic medical conditions. You’ll read more about him in future posts, but let me say this – support, empathy, attention to a parents intuition, sound medical advice and care – that’s all I wanted for Kate and Dr.S continues to deliver on that to this day. We gradually and with finality withdrew from our family doctors care over the next few months.

I want to share with you my notes from that first meeting with Dr.S. Here is what I had written as my concerns re: Kate: development (weak upper body); comprehension (lack of any babbling); paleness; fatigue; eating/nutrition; sleeping (waking every 2 hours and crying every night).

Then I wrote what I would like in his role as Kate’s pediatrician: to have Kate followed closely; to have Kate examined regularly and thoroughly; to have the right questions asked of us; to have our concerns addressed; to know what else we should be looking at or examined re: Kate.

In those first few months there was a flurry of activity. We were waiting on a hearing test for Kate, and MRI, and more bloodwork. OT wanted to do a ‘feeding study’ to examine Kate’s gastrointestinal and swallowing function. We were supposed to be keeping a journal on Kate’s feeding (what and how much), and we were working with the OT to make accomodations to strollers, crib, high chair etc. to provide Kate better physical support to compensate for her hyptonia. We were dealing with a lot of investigation into Kate’s bloodwork (genetic testing, anemia and possible disorders of hemaglobin production). There were concerns about the contribution of Kate’s hypotonia to her ability to eat and swallow, and complications with aspirating her food. We engaged more specialists for Kate in the roles of dietician and an OT who specialized in feeding. There was so much information about food preparation and how to nurse Kate – it could make one crazy. I had forgotten how all consuming feeding had been those first 2 years. Kate is doing so well now with eating and eating all foods now – I had forgotten that at one time we thought she would never progress through ‘thinned’ baby cereal and would end up G-tube fed.

First Hearing Test

Kate had a hearing test at the audiology clinic of CHEO in September 2008.  This test was done at the age of 11 months in a ‘sound booth’ where Kate was to ‘react’ to sounds and demonstrate awareness through her reactions, e.g. looking at an animated animal positioned to the left or right of her.

When I read these notes and look back at it now, knowing what I know now about hearing loss, I can’t understand how there would be any expectation that there would any accurate information from such a test. Kate is almost 5 years old and she STILL does not perform well in sound booth tests for her hearing.

Needless to say the audiologist who performed the test was not ‘conclusive’ in her findings and wanted to have Kate retested in 6 weeks.

Despite the inconclusiveness of the hearing test, I felt that something was wrong with Kate’s hearing and was concerned about her lack of babbling. I asked our private OT if she might have the name of a speech therapist who could assess Kate. We met this PhD for an hour, paid her $150 and were told that there was nothing wrong with Kate’s hearing and that we should simply keep talking to her. I wish I had sent her the audiology report we received that confirmed Kate had moderate to severe loss only a few short months later.

Trying to stay on top of things…

We were started to panic about what to do for Kate and thought visiting an osteopath may help with her GERD, hypotonia, and constant crying. Kate really disliked these visits for the most part, but the last 2-3 minutes when a pressure point was engaged she would instantly calm. (What was that about?). We continued these sessions for close to year, and then eventually decided they were not what Kate needed.

In the meantime, Dr.S was trying to make it clear to us that Kate had some sort of neurological dysfunction that was affecting her in many ways. What was happening was serious and needed investigation. He also made the point that Kate’s condition may be something that remains undiagnosed and may impact her for the rest of her life.

  • Duration
  • Degree
  • Extent

He could be certain about none of these. It was the first time we had heard these words. Kate was 1 year old.