Diagnosis Day

Very ill with DKA

Very ill with DKA

Tuesday November 13th, 2012 will be a day I never forget. It was the day our son, Matthew, was diagnosed with Type 1 diabetes (T1D).

I’ll tell you a little about Matthew, he’s always been a very slim boy. Average height, but always on the low side for weight. In August, just before he was due to go to summer camp, he got strep throat. He also had a horrible mouth ulcer from his braces rubbing the inside of his mouth. He didn’t want to eat, and in just a few days he had lost 3 lbs in weight. He struggled to get well and missed 2 days of camp as a result.

Fast forward to November 2nd, another visit to the pediatrician as I thought he might have strep again. This time it was negative. However, he was weighed as routine and noted that he hadn’t gained any weight back since he lost those 3 lbs back in August. Over the next week or so, he seemed to be really tired at bedtime. No issues getting to sleep.

Then the weekend before diagnosis, we noticed he was drinking a lot of water. Like constantly at the drinks dispenser filling up a glass. He was eating non stop. But shockingly he looked really thin. On Monday he got up happy and ready for school. I wanted to take him to the pediatrician but he didn’t want to miss school. He came home from school in the afternoon, quite happy. Starving hungry, ate a ton of food, drank lots more water. A few hours later, we sat down for dinner. He didn’t want to eat. He felt ‘funny’ He wasn’t really making any sense what he was saying. We let him leave dinner and go for a lie down. We knew something had to be wrong. I spent some time on google trying to work out what his symptoms could mean. Type 1 Diabetes seemed to make sense, but reading about it, I prayed that it was not that. At bedtime he filled his water bottle. He never took a bottle of water to bed ever. At 1am in the morning, he woke us up by switching all the lights on downstairs so he could fill his water bottle again. My mind was made up at that point. He was going to the pediatricians first thing in the morning. No more excuses.

I asked my wonderful mother-in-law (who thankfully was staying with us at the time) to come with us to the pediatricians as I had a feeling we’d have to go straight to the hospital if my fears were confirmed. She sat in the waiting area whilst I went back with Matthew. Firstly they weighed him. He’s lost another 3 lbs in weight. As soon as I heard his new weight, I just knew life was about to change.

The nurse gave Matthew a bottle to do a urine sample. She wanted to check for ketones in his urine. The pediatrician came in, he arranged for the nurse to also check his blood glucose level. This was the first of the finger prick tests that would become an every day normal. His blood sugar level was 532. I asked what was the normal level. She told me between 80 to 150. She then said he had ketones in his urine. My world world fell apart at that point. I was totally devastated. I was not a tower of strength but a sobbing mother knowing my child’s carefree life had just changed forever.

Our wonderful pediatrician confirmed that based on those two tests Matthew did indeed have T1D and that Matthew had DKA (Diabetic Ketoacidosis). We needed to go immediately to Texas Children’s Hospital ER department where they were awaiting our arrival.

That was the start of 3 days in hospital.

On arrival, Matthew was admitted to ICU and needed to have to two IVs put in. He had a bad experience when he was 3 1/2 years old having an IV put in and it had made him terrified of needles ever since. Again, the 1st IV to go in was just horrible. They struggled to get it to work. After many tears they had to do a 2nd one. I promised Matthew whatever toy/game he wanted to let them put the 2nd one in. Thank God the 2nd went in first time with no issues.

The rest of the day was a whirlwind of doctors coming in and out of the room. First a group of endocrinologists ordered more tests to confirm the T1D diagnosis. They explained that one of the IVs was to bring Matthew’s blood glucose level down very slowly to a normal level. They also told me that there was nothing that I could have done to have prevented Matthew from getting T1D. It was an autoimmune disease whereby your immune system attacks the beta cells in the pancreas that produce insulin. They could not tell me why that happens, but one theory is that viruses are a trigger.

Another endocrinologist asked us if we would be prepared to help with a research study that was being conducted. I’ll talk about that later in a separate post.

It was also a sobering moment to realize that DKA was a very serious condition and that if we had delayed going to the doctors by another day or so, we may have had a tragic outcome. Delayed diagnosis can lead to brain damage and tragically death.

I lost count how many visitors we had to his room. The amount of information sheets and booklets that was left with us to study overnight, was quite overwhelming.

That night I stayed on the sofa bed in the room with Matthew, and observed the nurse check Matthew’s blood glucose level every hour. In the morning she told me that at 3.30am his blood glucose level had finally come down to a safe level.

Later that morning, Matthew was able to eat breakfast for the first time along with a shot of insulin for the food he was eating. By that point in time, he had not eaten anything in 38 hours.

First meal

First meal

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