Our DX Story

April 27, 2009

Where do I begin to tell you about this day?

Many people have asked us what the warning signs were, what were the symptoms, does diabetes run in the family...
 No, diabetes does not run in our families. However, Type 1 Diabetes is an auto-immune disorder. Both of my parents have auto-immune diseases of some kind. Maybe that was a factor, maybe not.

Sweetpea was sick ALL winter. It was one thing after another. Pink eye, stomach flu, scarlet fever, stomach flu again, a few colds and coughs thrown in and then this virus. She had to have blood work done (one finger stick and one draw from the arm - and I thought that was awful. Little did I know what lay ahead...) and it showed that her white count was high. They grew her blood for a few days to see if it was bacterial or viral. In the mean time, she got 2 shots - one in each leg, simultaneously - in case it was a bacterial blood infection. She did that twice. The shots were in the thigh muscle and very painful. Turned out to be a virus.  Or was it?  Now I wonder if it could have been her body fighting against the autoimmune attack.  We'll never really know...

Then about Spring Break time, I noticed a few things. She was REALLY skinny. She's always been petite but her little shoulder blades were really protruding from her back. I bought her "spring" clothes before we left. We tried them on, they fit. We got to Florida, they were too big. We started noticing about that time that she was waking up with a VERY full diaper. She even peed through it a few times. That had never happened before. She was drinking a lot. I remember sitting on the couch at the condo in Florida and asking if I should be worried about this. I specifically asked if I should be worried about diabetes. "No, it's just hot here. You worry about everything."   Hmmph.
We got home and at times it seemed better but it never left my mind. Of course, I asked my friends what they thought.  They thought it seemed normal compared to their kids. We thought about going to the doctor, but thought it was too early. We had been there soooo much....  And as soon as I would be ready to call, things seemed to get a little better.

But.....Her attitude got worse. She was grumpy, angry, and nasty. She had her best friend over and she spent half the night crying in her room over some small dispute. The littlest thing would just send her over the edge.

She started crying and not wanting me to leave her at school. I just assumed it was because she was in a new room. She started having "potty" trouble.  She was pretty much trained in the toddler room but after moving to the preschool room things got worse. I thought she just didn't like it there. I didn't love it as much as her old room and I had some concerns about the appropriateness of their curriculum - I just figured that was stressing her out. She started stuttering. She was constipated.

Finally, we had signs we could no longer ignore.

We went to the zoo on April 25th.  As part of a special day, we stopped for breakfast on the way.  Sweetpea had orange juice and donuts.  It makes me ill now to think of what that food did to her body. It was a horrible experience. She was afraid of the train, threw a fit at lunch, refused to walk and had to be carried through the entire zoo. She threw up that night. She didn't have a fever, though.  I thought it might have been because it was so hot that day. 

She seemed better the next day. We went to the park. She wasn't interested in playing. She refused to play and wanted carried back to the car. 

Mom and Dad came home from Florida the day before and they came over to watch her so we could go to Bible Study. I remember sitting on the back deck of our friend's house enjoying the evening.  It was peaceful and relaxing.  Until...They called us and said we needed come home right away. She was very uncomfortable and something was not right.

When we got home, she was laying by her bed moaning.  She had been really thirsty and they had given her orange juice.  She had drank two glasses.  She threw up again but seemed to feel better after.

I knew.  I knew then.  We kept looking up diabetes symptoms on the computer.  Some she didn't have.  I never noticed fruity breath.  But that night we checked to see if throwing up and irritability were symptoms.  They were.

Our air conditioner had quit working that day and it was HOT.  I was uncomfortable.  She did not have a fever, but I was worried that the heat might make her uncomfortable during the night.  So,  at midnight I drove Sweetpea to Mom and Dad's so we could sleep in comfort. The next day, I took her to the doctor.  The throwing up gave us just the excuse we needed to take her in. Jason met us there.
This is where it gets tough.

The first thing we did was check her weight.  When I saw it, my stomach lurched.  She had lost 3 pounds (down to 25) since her 3 year well check a month earlier.

The doctor thought it was due to throwing up. I asked about diabetes and he said he didn't really think that was what it was. I mentioned that she had had blood work done in February and wouldn't it have show up then? He said she would be REALLY sick if she had had it that long. He seemed to think she looked "too good" to have diabetes.  But, he said it was an easy test that they could do in the office so they'd check and see.

The nurse pricked her toe. She cried. A lot.

The nurse came back in to say that they thought there was something wrong with the machine and they wanted to try again.  So she did another toe prick. Sweetpea cried again. A lot.

And I knew.  I just knew.

( I met this nurse again, almost a year later, at a visit for an ear infection.  I did not remember her.  That day was such a blur... But she rememberd us.  She knew exactly what room we were in.  She told me that she rememberd looking at the meter that just read HI and thinking that it just couldn't be right.  She told me that she cried, too, that day.  I'm so glad we got the opportunity to talk again.)

The doctor came back in the room and told us she has diabetes.

He said we needed to get to the hospital right away. He sent us home to pack a bag but told us to do it quickly. He had called ahead and they were expecting us.  We were not to go to Emergency - we were to go to Admitting.  He said to plan to be there a few days.

Of course, we cried.  Millions of tears.
Well, that's a surreal time. I called work while packing our stuff to say I didn't know when I'd be back. Jason got the job of calling our parents and could hardly explain what was going on for crying. What does one pack for a hospital stay?

We arrived at the hospital they took us right upstairs to our room. They immediately started hooking her up and checking her blood. That was horrific. She had tubes and port things inserted in each arm. She sobbed and screamed while they were putting them in. "NO Mommy.  No. Please.  Make them stop!"  It took 3 or 4 nurses to work on her and hold her down. We tried to help but after the first one I had to leave the room. It was awful to hear her scream that way - so scared and not understanding what was going on.

I know they were trying to explain things to us but I can't remember a lot of it. I was in shock, I guess. They were explaining different things that they would be checking for. But again, they said they thought she would be fine- she "looked too good" to be really sick. Unfortunately, looks are deceiving.
Her blood came back that she not only had extremely high blood sugar but she also was in DKA- diabetic ketoacidosis. This is a VERY serious, life threatening condition. DKA happens when there is not enough insulin in the body. Blood sugar rises and spills over into the urine which leads to dehydration. Blood sugar rises but the body, without insulin, is unable to use the glucose for energy. The body starts to burn fat (leading to weight loss) - basically eating itself to stay alive. This also causes ketones- acidic ketone bodies - that poison the body. Had we waited much longer to get her to the doctor, we would have been in ICU. She was hooked up to IV fluids and an insulin drip and couldn't eat until her ketones came down.

Even though she had been eating, she was basically starving to death. They explained this to us this way: You're having a party and everyone is at your house and you don't have any food. So you go to the store and get lots of goodies but when you get home, you are locked out. So you go back to the store and get more food but you're still locked out. The people inside are getting really hungry and going crazy - they start eating whatever is available. Insulin is the key that converts the food you eat to energy you can use.

Let me back up a little. Type 1 Diabetes occurs when the pancreas no longer produces insulin. No one is sure why this happens. They told us that people are usually predisposed to it and it usually takes something like a virus to push you over the edge and your own immune system starts to kill off the cells that produce insulin. There is no cure (yet). Taking insulin through injections is NOT a cure - "it's life support". Type 1 diabetes does not go away or "get better" as you get older. You are insulin dependent for the rest of your life. You can not take insulin pills or control the diabetes through diet (that's type 2).

So, she started getting insulin intravenously.  At first, they came in to do a finger stick and check her blood sugar every hour. Her tiny fingers were pricked every hour on the hour all day and all night long. 

My parents arrived and they stayed with her so we could grab a bite to eat. I couldn't eat - I just sat in the cafeteria and cried.

It's funny what you think about and worry about at first. I tried to focus on knowing that she would be ok.  The nurse told us first thing that she would be fine. She said, "she's going to be fine. You're going to learn how to take care of her. She's just going to require a little more care than before." Now I think, "Well, that was the understatement of the century!"

All these thoughts kept going thru my mind. "I need to email lesson plans." "What are we going to do about Halloween?" "This will become her life. She won't know any different." "How are we going to ever hang out with friends and go to dinner again?" "How will I ever be able to give my baby a shot?" "I'm going to have to clean out the pantry."

They checked her blood sugar every hour all through the night. That was a long night! We got very little sleep. We took turns sleeping in the bed with her.  I was so worried.  I couldnt even really touch her because every movement hurt her bandaged arms. 

At 7 am we got up and got ready for rounds! The entire group came in to do rounds. I felt like I was in an episode of Scrubs! The intern was even this young guy with kind of floppy dark hair who reminded me of JD. Our days were very scheduled. We had appointments with the social worker, nurse educator and dietitian.  We had little time in between and often didn't even get to eat.

Sweetpea came off the IV the second day and was able to eat "real" food again. We started learning to count carbs and draw up insulin in the syringes. Very soon they wanted us to start doing the shots. I was first. I remember getting ready to do my first injection and having tears in my eyes and thinking "I just have to disassociate. This is just a leg. I've got to get this done. I am not hurting my baby."

That's thing with diabetes. There is a HUGE learning curve. You are totally overloaded with information. Important information that you need to learn to keep your kid alive. No pressure! It's also really tough because it requires you, as parents, to basically hurt your child. Even though you know it's good for her, you know you have to do it, you know that it's what is keeping her alive - it's really hard be the one to inflict pain on your child. Parents are supposed to protect their children from pain - not cause it.

We were in the hospital for 5 days. It didn't take long before she started to look better. They had an awesome play room. In fact, we were in the room only minutes before someone from "child life" came to see what kinds of toys she needed. They brought games, dvd's, books, dolls, etc. There were lots of playrooms. She enjoyed going to the one with the paint!! Lots of her artwork is still displayed in our house. She also really liked the doctor play area. Amazingly, she was able to do the whole routine - wipe, pinch, shot - by herself to her babies on day 3! She also really enjoyed being wheeled around in the wagon!

Funny things from the hospital: We were trying to explain to her what was wrong. She said, "I have dumb-betes?" I thought that was appropriate. She was fussing one day because she was hungry and could only have carb free snacks. The nurse educator was working with us and trying to appease her. She was asking "How about cheese? Turkey? Sausage?" Sweetpea said "NO. NO. NO." She was very grumpy. The nurse said, "How about some carrots? Do you like carrots?" Sweetpea growled back at her, "Carrots are for rabbits." She quit asking after that!
After 5 days, they finally kicked us out! The staff was beyond fantastic. Everyone we worked with was wonderful. They helped make one of the worst times in our life bearable. They were so patient with us while we cried (I cried a lot) and tried to learn all the new things. They made sure we were really ready to leave when it was time to go. Leaving was really hard but we were looking forward to being at home.

It was scary to leave the security of the hospital. It was (and still is, at times) like having a newborn. You're scared to go home and take care of her on her own. You're up all night and totally exhausted!
It still is scary, at times.  I still have moments when I'm sad.  Or mad.  Or scared.  Or frustrated.  Or whatever.... 

But each day moves us along the path.  Each time you do something for the first time, you move forward. 

And you know that the bad days, the hard days, the sad days.... they don't last forever. 

Sooner of later, it becomes your life. 

And while you will NEVER forget the day that changed your life, you know your purpose now is move forward with grace, courage, and hope. 




Life for a Child

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