Tuesday, October 25, 2011

One year ago today...

with the diagnosis of my then 13 year old son, we began life as a "Double D" family.

Every parent of a Type 1 child can tell you exactly the date of their child's diagnosis, it is as if it is seared into their hearts. Understandable really, it's the date your child's life, and the lives of the rest of your family, changed and you began to live a different kind of "normal".

Tim's diagnosis wasn't as dramatic as my daughters', seven months earlier.

Not long after Issie's diagnosis we received a letter asking if any of our immediate family members would be interested in participating in the INIT II Nasal Spray Clinical Trial. Given that Tim was 13 we left the decision entirely to him. His initial response was, "Well, I would rather know if I'm going to develop diabetes and do what I can to stop it." So, he agreed to have the first round of blood tests to determine whether or not he had the antibodies associated with Type 1 Diabetes.

We contacted the Diabetes Educator at the hospital and let her know that Tim would have the antibody test and arranged to have those first tests done on 28 July 2010.

Tim at the State Cross Country Championships a few days before the INIT II Antibody Test.

Tim doesn't handle blood tests very well. Issie and I were there with him and Issie found it very amusing that her big brother is so sensitive to blood and had to lay down on the bed. Issie doesn't have a problem with blood, but she has a severe needle phobia - yep, someone up there was playing a BIG joke when they decided that my two kids should have T1D!

So, the blood tests went fine, and after about six weeks had passed with no word about the results we all relaxed and assumed that Tim did not have the antibodies.

Tim was sick for most of the month of August and going into September with tonsillitis. He was on antibiotics for weeks and just didn't seem to be getting any better. On 26 August, while we were at the pharmacy picking up yet another prescription for antibiotics, Tim weighed himself on the computerised BMI scales at the pharmacy. His weight on that date was 67kg.

He's an active kid, at that point he was coming to the end of the soccer season, his team was set to win the championship for the second year in a row - which they did.

After the regular soccer season finished Tim and most of his team-mates started the Summer indoor soccer season. Even though Tim had been quite sick he still insisted on playing and seemed to be okay.

The kids were getting ready to start at a new school after the October school holidays. There was a lot to organise, meetings with staff and with the school nurses etc about how to look after Issie. I spent hours and hours putting together her Management Plan for school - trying to cover every aspect of her care and every situation that may arise at her new school. Thankfully, for the first time in a number of years, they would both be going to the same school again.

On Monday 11 October, the day before the start of the new school term I received a phone call from one of the Endocrinologists at the hospital. There had been some kind of administrative oversight and they had just come across the results of Tim's antibody tests. He had tested positive to high levels of the antibodies associated with Type 1 Diabetes and needed to come to the hospital as soon as possible to have further blood tests.

Tim had already missed a lot of school in the previous school term at his old school and I did not want him to be taking days off so soon after starting at a new school, quite aside from the fact that the end of year exams were due to take place in week 3 so I wanted to give him the best chance possible to settle in to his new school environment before sitting those exams.

Eventually, with much juggling and negotiating, the Diabetes Educator and myself were able to agree on a date for Tim to come in and have the Oral Glucose Tolerance Test at the hospital. It would be a day off school on the Monday and then another on the Thursday for the next lot of tests.

The date of the Oral Glucose Tolerance Test was Monday 25 October 2010.

The weekend before the OGTT Tim had to "carb-load" from the Friday to the Sunday and then fast from dinnertime on Sunday evening until the Monday morning so that his "fasting BGL" could be taken when we arrived at the hospital.

That Friday evening Tim had an indoor soccer game. He was not himself during that day and had been feeling a bit "off". I checked his BGL before he started the game - just to make sure that nothing was going on in that department! As had been the case with all random BGL tests I had done since finding out that he had tested positive to the antibodies, Tim's BGL was within the normal range.

During that game Tim was very sluggish. He was missing shots that he would usually nail and just did not appear to have the energy to go after the ball. A parent of another team-mate, who is a nurse, said to me, "I know this may sound a bit strange coming from a parent, but where has Tim's bum gone?"

I had noticed that he had lost a little weight, but it wasn't until then that it hit me just how thin he had become. He was a very solid little kid, but from about age 6 upwards he's always been very slim and athletic - but now he was skinny! Not only that, but during the game other parents kept asking me if Tim was okay because his face was "grey" and he appeared to be a bit out-of-it.

Tim refused to come off the court and played the entire game.

When we got back to the car I tested his BGL - it was 6.1 - perfectly normal.

Over the course of the weekend he seemed to pick up again and was fine, eating normally and enjoying the fact that he HAD to eat lots of carbs.

We arrived at the hospital at about 8:45am on Monday 25 October and the Diabetes Educator got Tim set up for his fasting bloods - and of course had to do all the usual "obs" - including height and weight. Tim's weight had dropped to 57kg. He had lost 10kg between 26 August and 25 October!

Cannula in - ready for fasting bloods - 25 October 2010

While the DE was taking Tim's fasting bloods Tim said to her, "You have to promise me two things if or when I get diagnosed with Type 1, you have to promise to give me a Rufus Bear, and you have to order a pump for me."

The DE laughed, but made those promises.

I was in desperate need for a coffee by this time and told the DE that when she got back from checking Tim's fasting BGL from the bloods she had just taken I was going to run downstairs and grab a coffee. Her response was, "that's fine, I'll be back in 2 minutes."

The DE was gone for 20 minutes.

When she returned she was not alone. The Endocrinologist who had looked after Issie during her pump start was with her. In one hand the DE was holding a tray with 4 BGL testers, and in the other, behind her back, she was holding a JDRF KidSak.


The DE said to us, "I'm sorry I have been gone so long, but I have been running around finding other BGL meters to make sure the result was correct. Tim's fasting BGL was 19.5. Based on this and on the fact that he has lost 10kg in a little over 6 weeks, I'm so sorry, but Tim is diabetic."

I felt like I had been kicked in the stomach.

After about 20 seconds of absolute silence Tim said to the DE, "So, where is my Rufus? And I want a purple pump."

True to her word, the DE handed Tim the JDRF KidSac with his Rufus Bear inside, and filled out the forms for a purple insulin pump.

We spent the next few hours at the hospital for further tests and for a "crash course" in T1D education. It was the easiest T1D education the DE had ever done, because, thankfully Tim had been present at almost all of his sister's education sessions, including her Pump Start.

One week later, on Monday 1 November, Tim started using his insulin pump. That week was also "exam week" at school. Tim was excused from his exams upon advice from his Endocrinologist who was concerned that the stress of the exams would mess around with his BGL's so soon after his diagnosis.

A few days after Tim's pump-start.

Now, one year on, T1D is just another part of our lives. Since it's just me and the two kids, who are both T1D, it makes things pretty easy when it comes to meals and the everyday T1D stuff.

Night time is a little more interesting and it's not uncommon for me to be up 4 or 5 times during the night - one child will be running high, the other will be running low. Nana-naps are a survival tool for T1D parents!

But, that's normal for us - just a different kind of normal.

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