Monday, March 03, 2008

Life happens...

While I have been neglecting this blog, life just kept on coming. And with it came some changes.

For months, my in-laws had planned to take my son with them on a 6 week trip to Europe. Because my in-laws don't like to go to Europe in the summer (high tourist season), they were going from late August through mid-October. Dylan would have to miss the first 8 weeks of school. We discussed this with his school Principal in May and he said it would not be a problem. We got his passport and we were good to go! He was so excited!

In early August of '07 to we made the trip to Atlanta drop him off at his Grandparent's house. We stayed there for a few days. While we were there, I noticed that he was getting up in the night to pee. This was unusual. Usually he slept right through the night.

We left for Arkansas, and Dylan stayed. He (and his Grandparents) left for Europe on Aug 28. They rented a car and they drove through Italy, Germany and France for 6 glorious weeks.

While they traveled, they noticed that Dylan was thirsty all the time. They had to carry bottled water with them and he just couldn't get enough. Of course he peed a lot. And when I say peed a lot, I mean A LOT!! He couldn't go much more than a half an hour without feeling a desperate need to pee. He finally got to the point that he would just go find a spot and pee, even if it was in front of everyone at the Eiffel Tower. While they drove, his need to pee was so irritating, that they finally gave him a pee bottle, and told him to pee in that, so they wouldn't have to stop every half hour. He filled bottle after bottle. They also noticed that he ate more food than the two of them put together! He could finish a huge Kebab sandwich and start in on his Grandmother's! They could barely keep up with his appetite.

And yet, he was getting thinner.

We returned to Atlanta to pick up Dylan in late October. My in-laws joked about how much Dylan could eat, drink, and pee. On our 10 hour drive home, we realized just how bad it was. He would sit in the back seat howling because of his desperate need to pee!

So, Dylan had missed the first 8 weeks of school. He is a smart child and the principal and counselor had no problems with us wanting to pull him out of school to go to Europe. They were sure that he would slide right back into school with no problems.

He didn't.

He just couldn't get back into the swing of things. When I had my first parent/teacher conference a few weeks after his return, the teacher said "Is Dylan an underachiever?" I didn't know what to say.

He brought home C's on his report card for the first time ever, and I just didn't know what to do. Last year, he almost had a C in math and we knew it was due to speeding through his homework so he could read. He would do it as fast as he could in the classroom and then read books. He never even brought homework home. We grounded him from the computer until the grades were up, and, boom, he brought up his grades. It was no big deal.

This was different. He had two C's, and he just wasn't keeping up with his school work. He was making bad grades because he couldn't do the work! I would help him with homework and I could tell that his brain was fumbling over all the information. In a months time, he hadn't even read 1 book! Not one! Very unusual!

I was wondering if we had made a huge mistake letting him go to Europe.

One night he just sat up in his top bunk and threw up all over everything. It was a huge mess! My husband told him to get a big drink of water, and I followed him into the kitchen. He drank a large glass and immediately threw up what seemed like a gallon of water onto the floor. He felt ok in the morning, so we did nothing. Little did we know, we should have taken him straight to ER that very night!

The continuous thirst and urge to pee continued. Meanwhile, new symptoms emerged. He had constant heartburn, and very painful canker sores in his mouth. His skin was chapped and very dry. He was eating massive quantities of food, more than what a normal adult would eat, and yet he was so thin. And his personality was just...different. He was so irrational! He would cry easily, over the silliest things. Where was the son I knew before he went to Europe? This child was just so changed!

One day, I tried to get him to walk to school (maybe 1/4 of a mile or less) and he just wouldn't do it! He used to love walking to school! He just whined and moaned and complained until I drove him. I was so annoyed with him!

On November 28th, Dylan attended a chess tournament with his GATE class. During the lunch break, he ate a few bites and then threw up all over. He seemed to feel ok, so no one bothered to called me. He continued to play chess, winning 4 out of the 5 games he played (amazingly!). The last game was a stale mate. He came home and told me about throwing up, and he threw up several more times after he got home. He was very hungry, but was convinced that he needed pizza. We had eaten pizza the day before, and somehow he felt that pizza would make him feel better. He was completely irrational about it. He kept telling me that he HAD to have pizza. I kept telling him that we were not getting pizza and he just kept asking me where we could get pizza.

He wasn't feeling well. That much was obvious. But when I would ask him if he felt sick, he would say no. He was so lethargic. All he could do was just lay on the couch with a blanket over his head. I kept checking him for a fever, but there was none.

He looked terrible (and had for days). His skin was pale gray and he had dark circles around his eyes. His hands were bright purple-red, though. It was very noticeable. At this point, I also noticed that he was starting to make a strange labored breathing sound. Additionally, his breath smelled funny. I kept asking him to breathe on my face, so I could figure out the smell.

I started looking online for symptoms involving strange smelling breath. That led me to reading about a fruity odor on the breath, which led me to Diabetic Ketoacidosis, or DKA.

Ah, well, obviously it wasn't that, because Dylan doesn't have diabetes. So what if his symptoms matched DKA? It had to be something else, because he doesn't have Diabetes!!!! And yet, every time I googled his symptoms, DKA was always the top match.

I called our insurance's health line. I talked with the nurse. I can't remember just what I told her, but she never came up with the idea that he had Diabetes. She just said keep an eye on him.

Dylan had been telling me for the last few days that I needed to make an appointment for him to see the doctor. He knew that something was seriously wrong and wanted me to take him in. So, thinking that he was right, I made an appointment for him to go to the doctor on Fri. (two days away). I figured we could test for Diabetes on the off chance that it was that. But, at the same time, I knew that if it was Diabetes, we'd never make it that long, since he was throwing up already, which was a sign of severe DKA. Once you are at the point of throwing up, you need to be hospitalized.

Obviously, I was able to intellectually grasp the concept of diabetes, but I was completely unable to believe that this was what my son was actually suffering from. I knew he didn't have diabetes. I knew that if we took him to the ER, we'd laugh at ourselves for getting all anxious over some silly thing that wasn't diabetes.

Initially, my husband discouraged me from taking him to the ER, pointing out that I had wasted $50 when I took my daughter to the ER for hitting her head on the floor. She momentarily lost consciousness and I decided to take her in. She was absolutely fine. We rarely go to the ER.

As the night wore on, my son breathed heavier and became more lethargic. I didn't want him to be alone in his bed, so I slept next to him on our double futon. His hands were still bright red. Finally, it got to the point that he couldn't sleep due to his labored breathing (lack of oxygen!!). Finally, I woke my husband at 2:00 AM and told him that Dylan just couldn't breathe. Sean took a shower and Dylan got dressed. My other children were asleep and had school that morning, so I stayed home. As they walked out the door, I told Dylan not to worry, that it was probably no big deal (serious denial on my part).

They drove the 1/2 hour to the Children's Hospital. During the drive, my husband knew that it had to be Diabetes. Upon arrival, my husband mentioned Diabetes, and since Dylan was struggling to breathe, they acted quickly. They had his blood tested, and an IV in, and a diagnosis within 15 minutes.

My husband called me and simply said "It is Diabetes." After talking with him for a minute, I hung up and started shaking and crying. It was early morning, Thursday, November 29. A date that my son (and I) will always remember.

My son was put in PICU for a day and a half and then we were transferred to a regular floor, where we received diabetic training for the next 2 and a half days. They don't let you leave the hospital until they feel you are at least somewhat competent in caring for your newly diagnosed child.

In retrospect, I now know that my son was very near death. When he was struggling to breathe, we waited. My husband showered. We drove the 1/2 hour. The poor child should have been life flighted to the hospital. It was that serious. He was almost to the point of cardiac arrest when he finally got to the ER. His body chemistry was so out of whack that they couldn't even give him insulin right away. His blood was highly acidic, which is very dangerous and cannot be tolerated for very long. His potassium levels were low and insulin will cause them to drop even more. If they had given him insulin right away, he would have had a heart attack. After several hours, they gave him insulin and Dylan slept while his body chemistry began to correct.

Dylan is a Type 1 diabetic. His pancreas does not make insulin and it never will. He will be required to take insulin for the rest of his life (or until there is a cure). It has been 3 months since diagnosis and Dylan is doing great! He needs to have insulin shots every day. At every meal, he checks his blood sugar, and then counts the carbs in his food (before he eats) and gives himself a shot of fast acting insulin (Novolog) at a ratio of 1 unit to every 15 carbs. At night he gives himself a shot of slow acting basal insulin (Lantus). He is allowed to eat almost any food, with one caveat. He has to cover it with insulin. Random snacking and thoughtless eating just doesn't work.

Life as a diabetic is so complicated. He checks his blood sugar a minimum of 4 times a day, and sometimes as much as 10 times a day. Every day (every minute!) is a balancing act of getting enough insulin to keep his sugars from being too high, but not getting so much insulin that his sugars drop dangerously low. Dylan is remarkably responsible about his own care. He is simply amazing!

1 comment:

Val said...

Oh Laurie! That story brought tears to my eyes. How much you and he have been through! I am so glad he is ok, and so glad you know what it is now, and are able to take care of it.

I will be watching your blog now, since you are back on a bit. :)

Much love and blessings my friend!

Love Val