One of the most challenging situations with Troy being non-verbal and minimal methods of communication is when he is ill. It is always painful to watch our children when they are suffering; however, I have to believe watching Troy when he is sick to be truly agonizing.
Since Troy was young, I have always been asked by doctors ‘are his bowels normal?’. Considering he is in diapers at the age of 19, generally speaking they have always been normal to what I knew Troy’s bowel movements to be. In all honesty, I don’t know what a bowel is supposed to look like in a diaper outside of what an infant’s looks like.
For many, many years, I have suspected something goes wrong when he has had a bowel movement. It is not when he has it, but at the time when we go to change him (trust me, I do not mean hours in between, I mean moments). After he has had one and we have cleaned him, he becomes extremely rigid. He goes into a trance-like state, wraps his arms around his tiny frame and tends to scratch his back or just hold himself with the strength of someone 4 times his size. We often have to leave him laying there because he physically cannot help us to get up. Throughout our medical journey I have brought this up to numerous doctors and nothing has become of our comments, except twice.
Once was a pediatrician here in Winnipeg and the other was our chiropractor. The pediatrician was completely stumped and could provide no explanation. He had us have X-rays done, to which nothing was found. Our chiropractor suggested I bring the X-rays to him and the first thing he noticed was that Troy had gas from his bowels to his upper stomach. Huge amounts of gas was built up. He suggested I contact the pediatrician again and so I did. I also contacted the location to which I had the X-rays done and asked why it wasn’t brought to our attention. Sadly, I was very mistreated by the receptionist there and told that if there was a concern the X-Ray doctor would have ensured it was brought to the pediatrician’s attention and that a chiropractor is not a doctor. In discussion with the pediatrician, again he couldn’t explain anything, but suggested we put Troy on a laxative, to which he commented ‘no harm, he can be on it for years’. I didn’t return to that pediatrician, as I do not believe on placing our children on any type of permanent medication without understanding the cause.
In the past several years, I have taken Troy off all forms of dairy, removed white sugar and white bread and limited whole wheat where I could. Still nothing really changed, with the exception his bowel movements were moving further apart. Sometimes 3-5 days would go by, before he had another one.
I then made a decision to check into a local pharmacy that offers additional assesments done outside our country. They are substantial in price, but my ‘gut’ instinct was I had nothing to lose, since I was getting anywhere within the medical community. It was through these tests, we found out Troy had a significant imbalance in specific bacteria within his bowels, the yeast/fungi components were unusually high, parasites were present and clearly there was an ‘imbalance of the gut floor’. We decided to enter into a regime of probiotic, enzymes, veggie compound drink and vitamins and withdraw as much sugar as possible. For the most part Troy’s diet is extremely healthy. We don’t use boxed foods, try to add the right amount of fruit and vegetables and avoid gluten or diary type foods. It’s important to note that Manitoba no longer pays for a lactose intolerance test, so that is why I was taking stabs in the dark.
Finally, we went from irregular bowel movements to a regular, what appeared to be normal, bowel movement each and every night around the same time. That was well over a year ago. It was in September of this past year, that we noticed Troy’s behaviour was changing dramatically. He would sleep from 9pm through to 11am on the weekends, be awake for 4-5 hours and then sleep again for another 3-4 hours. He seemed irritable a lot. He didn’t laugh as much, was always wringing his hands until they were white, jumping/stimming, screeching noises, and pounding to the ground on his knees. I realized this had started the last week of August and in the interim I had taken him to the doctor’s around the same time. Now that Troy is an adult and still undiagnosed, I had wanted to give ‘one more kick at the can’ for an official diagnosis because once he is in a day program and in his own residence, I’m not sure how much attention will be paid to this type of thing. It was from the blood work done that we had been called back to the doctors to find out Troy’s lipase level was at 559. (The norm is to be between 65-225). The doctor states he had a “grave concern” over the abnormal level of his pancreas and he would order a CT scan. That was early September.
Now for my American readers you may remember a film by Michael Moore, called “Sicko”, discussing his point of view on the American medical system and shared how we do things in Canada. Well though a fantastic documentary, it wasn’t completely realistic in my personal experience of our Canadian medical system. It has its flaws and many of them at that. We purpose it is free, but it is paid for by our taxes and our wait times are some of the most ridiculous in the first nations.
So now we wait for an appointment for a CT scan. We received notification in October that it was the first week of December. The treatment we received there and the respect Troy was given prompted me to contact the hospital and the supervisor to commend them. Unfortunately, ‘no abnormalities were noticeable’. Our family doctor proceeded to advise that this just means they couldn’t see anything. With a few tears in my eyes, I begged him as to what do we do next as I just can’t stand by watching Troy go through the pain. He told me, he was recommending Troy to a “Doogie Howser” type Gastrointestinal Surgeon in hopes of a colonoscopy and an endoscopy (camera up the rectum and another to go down his throat). YEA!, but that didn’t last long.
We received notification a few days before Christmas that the consultation only was booked for February 20th, 2013. WOW! I contacted the medical secretary of this “Doogie Howser” surgeon and asked if there was a waitlist and I was informed there wasn’t. In my half-joking manner, I said “That’s fantastic, Troy can be at the top of the list”. Clearly, that went over with a thud and I expected nothing more.
Over the holidays was on and off tough with Troy. We all knew he was in pain via his agitation, stimming, jumping, sleeping and generally grumpy status. This is not my happy little man with the belly laugh and no behavioural issues. Prior to the holidays, we had already received word from school, he had choked an Educational Assistant by twisting the necklace around her neck, pinched several children in the arm and dug nails into others. This was not our Troy. I started to research getting medical attention in the U.S. I found out there are medical brokers who could help us find services in the States, deep discounts at hospitals due to the economy and that the Mayo Clinic is so advance, they even show you how to navigate the Minneapolis airport if you wish to visit them in Rochester, MN. I was starting to consider risking Troy’s financial future by spending it directly on immediate medical care. My husband and I made a decision, next time Troy was vomiting I would call 911 for an ambulance and get him into emergency. If that didn’t work, then we would drive the 10 hours to Rochester, MN or fly and get him assessed there.
That moment came sooner than I thought. This past Sunday at dinner, it was evident Troy was in a fair amount of pain at the dinner table. By 10pm, his bowels exploded again. All seemed well, when I got him up for the first day back to school and he ate his healthy oatmeal, blackberries and almonds, with a glass of cucumber water. I went to put his coat on and he doubled over onto me. His lips curled in the way they do right prior to vomiting. He couldn’t stand for the pain, yet had the strength of 10 men in the same instant. His fingers wound tightly around the curls of my hair, his entire body weight leaning against me and barf on my hoodie, it was time to make a decision. He would switch from being curled in the fetal position to stretched out, writhing on the carpet like a snake. After 20 minutes, he quieted. His brother carried him to the couch and it seemed he was falling asleep. My husband left for work and within a few moments, an ear-piercing scream came from Troy. I called 911 immediately. They could see the bluish/purple skin around his eyes, the blue fingernails, the almost translucent skin and his lethagry. The paramedics made their assessment and off we went to the hospital.
Upon arrival, the triage nurse saw us first. I was advised that our wait would be a minimum 8-9 hours and blood work would be within the next hour, but more like 2-3. Now I don’t know about my readers, but I certainly know when I don’t have a coffee or tea in the morning, my brain works really slow. I was having difficulty computing the data. We were then escorted to the general emergency waiting area, but they were full, so Troy and I were placed in the hallway. So there I am, no cell phone, a fifty dollar bill and 2 quarters and no diapers. For someone so prepared for everything in life, I certainly came to the hospital completely unprepared for the equivilant of a work-shift. Many thoughts are rambling around in my head, one of which includes, we can drive to Minnesota faster than I will be seen in our own emergency department. The other is ‘how on earth do I get anyone to understand the severity of pain this kid is in’. Most importantly, ‘are you frickin’ serious that you think I can sit with an autistic-type individual who is in pain, vomiting and never sits still for 9 hours in a hospital hallway? Of course, how do I go pee and how do I get a cup of coffee was also crossing my mind. After about 30 minutes, I can see the pay phones are not far from where I am, so I wheel Troy over and hope that my husband (who has no idea we are at the hospital) will realize that the words “Coin Phone” on his call display will be me. He does and tells me he is on his way to pick me up. He had heard from our other son that we had gone to the hospital and wasn’t sure which one. He had already called our family doctor and was told to come for 11:30am. If Troy needed to be admitted, he would have him admitted through the doctor’s office. And this, is our amazing medical system!!!!!
We drive home to pick up diapers and Troy hasn’t vomited once since the paramedics arrived. I do all that I know what to do: kiss him, stroke him, hug him. We have what I think is one of the best doctors in Winnipeg; yet he comes with a price. Your scheduled appointment usually runs about an hour behind. We wait and Troy waits as patiently as he can. During the visit, the doctor is hearing us and it seems we are making some conclusions. He has assured us that he will call the specialist’s secretary every day, and ‘beg, plead and bribe’ until he is told not to anymore.
It is now 2:30pm and we are on our way home. We stop at the local deli to pick up a bite to eat for take-out. My husband’s work cell phone goes off, to which I never answer, but for some odd reason I did. It was the specialist’s secretary asking if we would be able to come in a week Tuesday, 8 days away. I was in shock. She hadn’t even heard from our doctor yet, but they had a cancellation and remembered my earlier phone call. As I sat in the car stunned, I looked up to the heavens and thanked my dad.
For the first time in many years, I feel we are finally on the right road with the right drivers. We suspect that since Troy does not chew his food properly, it is rotting in the bottom of his stomach. That rotten food is causing an extreme amount of gas, that gas builds up and causes the exploding bowels. This all in turn is affecting the pancreas.
And throughout this journey, I cannot stop myself from thinking, who is going to do all this when I die?