I love my team

D-day/week was an incredibly sad and stressful time full of horribleness, but at the same time one of the most wonderful things in the last 8 months happened - we met our D-team.

The doctor who delivered the news to us in those early morning hours became Jonathan's paediatrician.  Admittedly not an endocrinologist but works directly with a few, she is one of the most well respected diabetes-focused paediatricians in the area, very knowledgeable and experienced in paediatric Type 1 Diabetes cases.  Jonathan absolutely loves her and despite a hefty case-load, she always takes the time to review anything we need to and help mentor us in our care of Jonathan.  During our stay at the hospital, she was in to see us every day, sometimes several times a day.  I walked the halls at all hours and more often than not she was there, to the point that I was starting to wonder if she lived there.  He was discharged just before a holiday weekend when the clinic would be closed for 3 days, so she gave us a number where she could be paged.
 
There are three RNs in the clinic that are all immeasurably valuable.  M is a Certified Diabetes Educator and was the one who started us on our in-hospital crash-course and the one that I ultimately look to, to vet any changes or advice that I'm not 100% sure of.  D1 and D2 (no pun or joke indented, but both their initials are D, so… I'm goin' with it in the order that I met them) are my other two go-to gals.

My weekly calls are usually with D2 who is also a CDE.  We review Jonathan's numbers from the last week or so, discuss my analysis and what I plan to do, and she helps by looking for causes of out-of-range numbers, offering suggestions for improved management, and finally we agree on dose changes if any.  D1 was also involved in our initial classes at the hospital with M, in fact she was the first person I ever put a needle into (BRAVE WOMAN!).  Now, I don't know if she was just trying to be nice or not, but after I removed the needle on a silent 10 count she told me to go for it as if I hadn't even inserted it yet.  Yes, she let me stick a needle in her... Now that's going the extra mile!

I'm on the phone with D2, D1 or M at usually once a week, even if it's just for a quick chat about the status quo, or if need be we've talked for upwards of 45 minutes going over any number of D related topics (I monopolize way to much of their time, but they are so great about it.  They always make me feel like I'm the most important call of the day).

We now visit quarterly for an A1c check, weight, height and blood-pressure checks, and a review with Doctor.  This is regular maintenance.  If the need were to arise, we would still follow normal protocol in response to situational urgency: appointment with doctor at her office, visit to clinic, or trip to ER, whatever the circumstances dictate.

Jonathan had barely finished his first post-diagnosis meal when we were first visited by a dietician.  She spent a lot of time with us reviewing how to read nutritional labels, gauge fresh food's size to estimate carbs, how to use the national food guide, assembling healthy well-balanced meals (that all kids should have), and how to add up all those carbs and subtract the fibre so that we can have the food side of the insulin ratio figured out.  She was also the one that turned us on to the Salter scale that we love so much.  From time to time, as we have questions about food and how what we put in his mouth is metabolized, we call her to get help figuring out why some of the "wonky" things that happen come up.  Guess what - she a CDE on top of being a Registered Dietician.

In addition to the medical team, we also have access to other support areas.  A social worker visited us during our first week to discuss financial support opportunities (we have insurance so this didn't really apply), government grants/tax credits, etc. and I touched base with her a few times while I was getting some of those set up.  For Jonathan, a Children's Life Services team member came in to talk with him, have some play time, and also do some children's level Diabetes education.  When we visit the clinic, Jonathan still has access to the supervised play area (if our appointment is within the hours of operation).  He enjoys visiting the clinic and looks forward to everything from the magic stairs (escalator), visiting with the clinic team, having Doctor check him out, and chillin' in the play area.  The team even initiated contact with other organizations outside of the hospital for us.

From my point of view, diabetes management is a team effort.  The team may change over the years and the level of interaction between the home team* and others may fluctuate, but it's not, and never will be, a one person show.  I could not imagine life without this team.  I'd probably be back at the hospital, in the mental ward.  Although we've learned a lot, and are now fairly self sufficient with managing the D ourselves, there is so much reassurance and comfort that comes with having this awesome team of professionals by our side through all of this.  I am eternally grateful to them and I could never thank them enough for all they do to help keep Jonathan a healthy, safe and happy 4 year old kid - because first and foremost, that's what he is; he just happens to have Diabetes.

*Home team: There are a few other key individuals on the team who I did not write about today.  Mom and sister also have important roles in this.  I have pretty much assumed the lead on this and manage most of the planning, communication and dosing, but my wife also takes an active role, in fact she administers more injections than I do, she flies solo when I have to travel and she does more of the meal planning.  Our daughter is one of Jonathan's big supporters too.  She tries to comfort him when he's weary of the pokes and shots, and she does her best to understand the impact that this has on all of us and be a team player.  You can also read about two other key team members in my April 25th post.

We are incredibly lucky and truly blessed to have such a great team!

Super Troopers

Kids are amazing.  They are resilient and stronger than we, or at least I, tend to give them credit for.  Sometimes I forget this, but in the darkest times they are my light.  If I had to pick the two worst times in my life they would be when my father passed away, and when my son was diagnosed with Type 1 Diabetes.

This past Sunday, April 18th, was the sixth anniversary of my fathers death and got me thinking about it again.  Our daughter, Alexandra, was only 4 months old at the time.  My dad made it just long enough to meet his first grandchild and visit with her a few times before the complications of MS took him from us.  She doesn't know it, and probably wouldn't understand right now, but she was the one person that got me through the most difficult time that I had ever faced.  A new life that gave me the hope and the strength to deal with a huge loss.  Now six years old she is growing up to be a granddaughter he would be proud of.  She's my #1 little girl.

It's hard to say which was worse, losing my dad or finding out that my son would be battling a potentially life-long disease, but I'll settle for a tie with the disclaimer that each one has it's own unique issues, just so that I don't have to dwell on the choice.

Throughout his hospitalization, starting school, working to find our new "normal" and even now, there is one person that I look up to for strength and reassurance.  There is one person that proves to me that when it comes to keeping the D at bay, life goes on despite the extra care and management.  When it comes to facing this with a healthy reverence and an intrepid presence, Jonathan is my shining example.  With the most at stake in this and the one to have to carry the burden, he goes on like nothing ever happened.  He understands that pokes and shots are necessary, accepts it as fact and routine, just does it and moves on as if it was nothing more than a brief pause.  As I wrestle with the "what ifs" and contemplate the down-sides, I suspect that his youth and innocence go a long way towards a naivety that allows him to go day to day without comprehending the horrible potentials of this disease. Even though he lives with the monster, he's just business as usual.  He's my #1 little guy.

As he grows and learns, I'd like for him to be able to maintain that apparent objectivity even as he adjusts his views and opinions based on his experience and education.  I hope that as he matures, he'll be able to preserve a little bit of that child-like clarity to help keep things in perspective.

Two of the worst things that I could imagine happening, and two kids that got me through it.  I owe them a debt that I could never repay.  I could try and explain it to them, but I don’t know if in my words they'll ever really understand how much I rely on them.

Our education in attending school (and a smidge of proof that things are ok)

Being diagnosed with Type 1 Diabetes was a huge event in Jonathan's life.  It was, beyond a month prior, totally unexpected and it changed all our lives forever.  Yet another huge event followed almost immediately after.  I'll give fair warning now, I am quite biased in the telling of this story and I have some very strong feelings about what transpired.  In fairness to all involved I would like to set the record straight in advance: It is not my intent to attack anyone personally.  Furthermore, my biggest beef is with a flawed system, not necessarily any one individual within it.  I've really toned this down since I first wrote a draft for the local paper.

School was a hot topic during our week at the hospital because we all knew that day was approaching, and fast!  There was some confusion at first regarding how his school-day care was going to be handled.  Initially we were told that a nurse would visit him at lunch time to check his blood glucose and administer his insulin; this was a huge relief.  However, shortly thereafter we were told that this would not happen because his school day technically ended before lunch and the program that provides care at school is only available during school hours.  Needless to say, I freaked.

I lost track of how many people I called and how many times I called them, but it didn't take long before I felt like I was getting the run around.  I met with his teacher, I met with his principal, I called the school board, I called the city, I called provincial offices, I called Canadian Diabetes Association, I called Juvenile Diabetes Research Foundation, I called Community Care Access Center, I called the Health Unit, I called Diabetes in Action, I called a whole slew of people and was continually referred from one person to the next.  No one seemed to know how to handle our situation.  It almost seemed like he was the only 4 year old diabetic in a school.

Even though his teacher was willing to assist Jonathan with his testing, this is forbidden by board policy.  Even though there was staff at the school willing to test him and administer injections on a personal basis and not as a function of their job, they are not permitted to and could have faced severe penalties (likely termination of employment).  It was very discouraging trying to work through the school system to establish support for our little guy.  Phone calls to the superintendent of education to request a discussion about the related policies were only returned by an administrative assistant who was relaying messages which were along the lines of, "no, nothing can be done" and "the matter is not up for discussion".  I was shocked and dismayed that our school board would turn it's back on a student in need.

Both my wife and I work outside the home and too far away from the school to travel there everyday at lunch, and the costs for contracting someone privately are outright prohibitive.  The option of not sending him to school for kindergarten was on the table, as undesirable as it was.
Everyone wanted the best for Jonathan and everyone, with a few exceptions, seemed genuinely sympathetic to his situation, but it seemed that no one was able to help him.  The school staff was inexperienced with diabetic students with the exception of one that was diagnosed at an older age and able to self manage, but they had never dealt with anyone so young.  The principal, while only able to follow policy to the letter, reached out to her contacts to see what was being done at other schools, but there was not a solution out there either.  Fortunately, out of everyone we contacted, we had reached a few key people that were able to come up with a creative solution that satisfied Jonathan's needs and respected the boundaries of the various organizations' policies and mandates.  Finally, after about 2 weeks of chasing people down, we were able to solve the issue of lunch testing and insulin.  This was a big step in that Jonathan would be able to attend school.

We still had the issue however of testing during class time.  Despite our best efforts to start off his day with an insulin / carbohydrate combination that will carry him safely to lunch, there is always the possibility that he may face a dangerous low or high.  And while the kindergarten teachers and a few other staff have been trained on how to detect symptoms by observation, this is highly inaccurate and in some cases not even possible.  We provided glucose meters and test strips to the school, but they simply are not allowed to use them.  The best we could do is "when in doubt, give a snack" and the nurse will correct at lunch if necessary.

Fortunately, the on-site after-school program isn't bound by school board policies in this matter.  They are a separate operating entity within the school facility and they are allowed to test him.  So in the afternoon, he can be tested whenever necessary, but the morning was still a gap.  Thank God the school policies do not prohibit the school and latchkey staff from caring and cooperating.  While daily testing is not practical, Jonathan is allowed to visit the latchkey office in the morning should the school staff feel that he needs to be tested.

Jonathan is loving school and we are so happy that he wasn't prevented from being a normal student. The last seven months have been stressful to say the least, but the reward had been a child that gets to live an almost normal life.

This is, from what we can tell, about as good as it gets in the school environment.  It's not perfect, but it's working.  It was hell getting there, and there needs to be a better standard put in place so that new diabetic students and their families don't have to all go through this.

Despite our very rocky start, I do have to give a big hand to everyone that is involved in Jonathan's care.  The only real evidence we have that our set-up is working is that he is happy and healthy and being a kid.  We collect all of our data, not every day is consistent, but we see positive trends and with the team's hard work and diligence his A1c went from 11.8% at diagnosis, to 9.4% at +60 days, to 9.0% 90 days later.  We're told that 9.0 is a gold star for a 4 year old but all of us are looking to head for 8.5% by May.

... And then there was light.

Our first week as D parents, like many, was spent in the hospital. Being admitted in the early morning hours of a Saturday meant that clinic staff would first visit Jonathan on Monday, but there was always a nurse just a few meters away and someone was coming in to check on him regularly and all hours. His new paediatrician almost seemed to live there and our family doctor came in to visit him too (yes on the weekend!).

We also got an unexpected surprise: As it turns out, my mother's cousin's son also has Type 1 Diabetes. She and her family were up to see us that very first afternoon in the hospital with a care package and a lot of encouragement. I could never adequately express my gratitude to them for their compassion and generosity as they helped us to get Jonathan started on his journey and as they have been there whenever we needed advice or insight.

One of the first things we learned was that there was a veritable army of people that had Jonathan's back. Doctors, nurses, diabetes educators, dieticians, social workers, children's life services, and the list goes on. They are also there for us too. Whether it was intentional or not, they made sure we never felt like we were going to have to face this alone. I took great comfort, and still do, in the fact that we have access to so many experts, a great team to help us manage this disease.


Early on, we discussed treatment options. Basically, what it came down to was that we had two insulin regimens to choose from - we were told he probably wouldn't be pumping right away. One option had an extra injection but also allowed a little more flexibility, so we chose that one because I had already made up my mind that while diabetes would from now on be in the forefront of our thoughts and plans, we were going to minimize it's impact to our son's life. What this means is that while keeping his health and well-being our number one priority, all things being equal we were going to choose options that differed as little as possible from how his life would have been without diabetes.


And so it was on. The first couple days in hospital the nurses performed the glucose tests and administered the injections. We watched, sometimes with great difficulty, as they had to pin him down while he fought back. What 4 year old kid wants to have needles anyway? This was all new and frightening to him. He didn't understand what was going on, we were just barely scratching the surface ourselves.


We got a crash course in biology, endocrinology, pharmacology, diabetes, and how Jonathan's life was going to be. A lot of information to take in over a short period of time but we were extremely fortunate to have a top notch team of diabetes educators without whom I'd probably have lost my mind. Just as fortunate, we still have access to this team as they help us manage by reviewing our data and consulting on dose changes.


They had us quickly put into practice what we had learned. It was tough at first. I was really hesitant to stick a needle into my beautiful little guy, but knowing what would happen if I didn't was a good motivator. The first couple kicks at the can were, in my opinion, nothing short of a spectacular blunder. I recall vividly the first injection I gave him was in his right leg and he was squirming so much that as I slowly approached with the pen, he moved and the needle scratched him. I pulled back and then quickly inserted the needle into his skin, pushed the button, and the pulled right back out only to see the insulin ooze out reminding me that I had forgotten the ten count. I had no choice, I had to let it go. There's no way to determine how much came out, so I couldn't try again until later.


Over the next few days, as we continued to work with the team at the hospital, we slowly became a little more comfortable, a little more capable, and ever so slightly more confident. Aside from the finger pokes and injections, Jonathan was really starting to like this whole thing. He had his meals served to him in bed. He had a TV and DVD player in his room and could watch whatever he wanted. He had many pretty ladies visiting him all the time. He had access to a very large toy room and people that would play with him and do arts and crafts while mom and I were busy learning as much as we could. It was probably the best vacation he ever had. I can't say enough good things about the hospital and staff. They went out of their way to turn our nightmare into a positive and beneficial experience. Now, I'm not saying that diabetes isn't still a horrible thing, it's awful, but my point is that they did everything humanly possible and then some to make a horrible situation as good as possible.


The day was coming. Time had flown by and it was almost time for him to be discharged. There was some back and forth as to when we'd actually leave though because we had one more challenge coming upon us: Mom was having surgery and would be laid up for a little while. We had been through a more aggressive surgery a year earlier and somewhat knew what to expect, but the question now was how best to deal with diabetes and recovery. Our son's paediatrician was very open to working with us on what was best for the family. In the end it was decided that mom and son would be discharged at the same time. I remember the final hours being very chaotic and all kinds of last minute changes and unknowns, at least from my perspective since I usually plan everything out to the Nth degree. But we sailed relatively smoothly out of the hospital and back into the real world.


The mass confusion I brought upon myself as we prepared to leave the hospital I think helped to shield my mind from the potentially paralyzing fear of re-entering the world with our new-found responsibilities. It reminded me of the first time I drove by myself. I had just gotten my license and my mother was on the phone and was going to be a while so she told me to drive myself to work instead of waiting for a ride. It was only a few blocks but I was so close to being late I didn't even have time to think about the responsibility I had just assumed for the first time, but about half way through my shift I realized I was going to have to do it again. In similar fashion, I left the hospital with so much on my mind that I completely lost sight of the fact that we were going to, for the first time, be taking care of our son without the safety net of being at the hospital.
I seem to recall the first night going ok. Over the next few days I was constantly testing his blood to see what his glucose levels were and there were corrections in both directions. I slept very little those first few days, but the one thing I had on my side was time. I had previously scheduled vacation time to take care of my wife after her surgery so work was not a factor in this first week. Somehow I managed to maintain my sanity despite it being a holiday weekend and the clinic being closed. His doctor gave me her pager number and the number for the paeds desk - thankfully there was no cause to use them.


After getting through Labour Day, I must have called the clinic at least twice a day to let them know what was going on and ask if I should be changing anything. I had a really hard time gauging his blood sugar based on his actions and behaviour, and I still do. Occasionally his highs and lows will line up with mild symptoms, but more often than not I find a normal level when he's acting strangely and sometimes a high or low when he's being perfectly normal. During this first week at home though I found this especially frustrating but fortunately we are able to test him as often as necessary. I can not even imagine what I would have done 10 or 20 years ago.

Out of everything, I'd have to say that home life was the easiest adjustment for all of us. So many of the variables are in our control there and we can react quickly to changes. Being at restaurants and other people's houses is still a challenge and probably always will be. It's also at this point that I have to admit that I think we've been really lucky in that things haven't been as wild as some other stories we've heard. From some of the stories I've come across, I've only been able to conclude that Jonathan's case is one of the more easily managed ones although as we all know, things can change in an instant.

In the beginning, there was darkness...

I've been asked a number of times, "How did you know?" or "What made you get him tested?". Every time someone asks, I think back and try to pin-point an event or issue that could possibly have been the first sign. I guess I'll never really know for sure exactly when his little immune system turned on his pancreas, but in hind sight there are a few things I can't ignore.

Last Spring (2009), I noticed that he was drinking a lot. He was always thirsty, and at meal time he would easily pound back at least double his usual fluid intake. I didn't really think much of it at the time since for years I have gone through spurts where I'm more thirsty than normal and drink a lot; I've gone through as much as 6-7L of water in a work day and I'm in an office. After a few weeks, his thirst levelled out again and it was all but forgotten. Again in August he started with the unusually high thirst. But this time it was extreme. He was even getting up on his own in the middle of the night to get a drink of water in the bathroom. At the same time, just as we were considering ditching the night-time underpants since he was starting to wake up dry on a regular basis, he started filling at least one and sometimes two pull-ups a night.

After about two weeks of extra drinking and really excessive night time wetting, I started to worry. The lady that took care of him while we were at work began expressing concerns too. Being diabetic herself, she was more aware of the warning signs. I was in denial, and started thinking back to the spring; this is a phase and it'll pass. The third week was the kicker. Jonathan was just not himself, and as much as I didn't want to acknowledge it, I could no longer carry on believing that he was just a little under the weather. Too many people had noted the changes in his demeanour and threw up the red flags. No mater what I was afraid to face, I knew one thing, I couldn't put him at risk by just waiting and hoping.

First thing Monday morning I called our family doctor's office to schedule an appointment. Thursday was the soonest he could be seen. I'm usually a little nervous going to the doctor since I know I'm there because something isn't right. This time was different, I was a mess. As much as I wanted to pretend it wasn't real, I already knew deep down what I was going to find out very soon.

Things happened rather quickly. One of the great things about our family doctor is that the facility she works out of, housing a few other doctors, also has an on-site lab. Jonathan gave up a urine sample while we were waiting to see the doctor and by the time we were in her exam room, she had results. The "sugar levels" in his urine were high. She told us that this could be indicating diabetes, but she would get blood work done to get more information. We were given the lab req. and told to come back in a week. I scheduled his next appointment and we went back across the hall, submitted the req. and waited our turn. He ran laps around the waiting room, which wasn't odd for him, but as a frightening reminder of what we were investigating he would stop every few times around and say he was tired. He was a contradiction, active as ever but complaining of fatigue. We were called into the lab and his blood was drawn; now the wait.
I don't remember much about the evening after that appointment. Either nothing remarkable occurred, or I've blocked it from my consciousness. The following day however, I will remember forever.

That Friday we were set to go out and celebrate our anniversary, 9 years two days earlier. Everything was planned in advance, the dinner, someone to watch the kids, it was going to be a nice evening. Per our usual routine, I picked the kids up from school and headed home to make dinner for them while we waited for mom to get home. When I walked in the kitchen I noticed a message on the machine. I listened to the nurse from our doctor's office state that Jonathan's blood work had come back and the doctor wanted to see him today. "Today?" I thought. It's 5:10, this message was from early in the morning. I knew the doctors office was surely closed buy now, but I tried calling anyway. I got the recorded message I was expecting and jotted down the after-hours numbers. One of the numbers was for a nurses line. As part of the family health group we joined, we have access to an after hours nursing service to call for advice.

I explained to her what was going on and the message I had just received. She told me that we shouldn't wait until Monday, we had two options. Take him to the ER, or the weekend clinic opened at 6am. I thought to myself, what's the difference between waiting until midnight to be seen in the ER or getting to the clinic first and being seen only 6 hours later. We discussed it briefly and I decided that he would be better off not going to the ER, for a lot of reasons, and 6 hours was not a very long time. The nurse on the phone didn't specifically agree or disagree with my plan, but reminded me that if I changed my mind I could go to the ER later.

I finished making dinner for the kids and sat them down to eat. As I paced, continuing to debate whether or not to go to the ER, the phone rang. Another nurse from the after-hours line called and told me that I should not wait. Based on the doctor wanting to see him so soon, it should be considered urgent enough to take him to emergency. I let them finish their dinner. My wife and the sitter arrived at about the same time and we took him to the hospital, went through the initial screening and then waited. I was on the verge of cracking the whole time. I'd like to think that most of the time I have it pretty much together, but when it comes to the kids I don't have much emotional control.

He was getting bored, but also tired. It was close to his bed time, so we tried to relax him and encourage him to sleep. We soon realized that we were likely not going home too soon, so we made a few phone calls to have pyjamas and pull-ups brought over. I'm not sure exactly what time we were called back to the screening station, maybe around 9:30 or so, but I vaguely remember I wasn't the one to take him over there. When my wife came back with him she told me they checked his blood glucose and it was "21" (mmol/L I'd learn later / or about "378" in other units). A lady sitting near us was shocked. A relative of hers, I can't remember exactly who she said, is diabetic and that is a really high number (I know now some come in much much higher). I think that was about the time I really broke down.

It wasn't long after that we were escorted into what I call "the bed room", which is basically rows of curtained stalls with beds and some monitoring equipment, a mini hospital room of sorts. Vitals were taken, more blood was drawn, and we waited some more. It seemed like an eternity on a high-speed slow-motion roller coaster. Finally, at about 2am or so we met a doctor, who we would come to know to be a wonderful paediatrician, that had come to tell us what we were sure we already knew. Our little guy has Type 1 Diabetes and his life is now forever changed.