Wednesday, December 28, 2011

Fear, Shock and Anger

Those 3 words describe the next few days while coming to terms with A's diagnosis. My husband met us in the parking lot at the pediatrician's office and we raced down to the ER at Children's Hospital. We had no idea what to expect. I tried to hide my tears from A who was still crying about missing her school Christmas party.

Triage already had papers and a room for A when we arrived at the ER entrance. They were fast and their looks didn't make us feel any better about her condition. They immediately began drawing blood and starting IV lines. A was so dehydrated it took several tries on both arms to get a line in. She screamed the entire time, "I want to go back to school! Mommy they are hurting me!"

We were in the ER for a few hours and then told they were moving her to the pediatric ICU because she was in moderate DKA and had large ketones. Her blood sugar was not that bad relatively speaking but the labs and the readings from her urine were very concerning. The doctor said he was surprised she was awake and conscious.

When they said "ICU" I was very afraid. I had no idea she was sick enough for the "ICU". I figured they would give her some insulin and teach us about diabetes and that would be that. Once in the ICU, she was hooked up to 5 different IV bags and 2 lines into her right arm. They continued to take blood pokes in her left arm too because they kept second guessing the readings from blood drawn from her right arm. We were so frustrated because they kept telling her no more blood pokes and then they would poke her again. I could see in her eyes she didn't believe any of them anymore. Neither did I.

The would not give her anything for pain because they said her brain could swell from too rapid a change in her blood sugar and she needed to be mentally alert. They came in every 15-30 minutes over a 24 hour period to take blood, change IV bags, test her urine and other tests. A screamed most of the time. She told us she wanted to go home. She asked me why I took her there. She told us she hated us. She screamed that the IV medication burned and hurt. And I could not give her anything to ease the pain. It was the worst 24 hours of my life. All the while, I was trying to grasp the understanding this wasn't something we could just fix with a few IV bags and go back to normal life.

They transferred A to a regular room late Wednesday evening. She still didn't know she had diabetes. She didn't know what that would mean. She was still on a saline drip for the ketones which were still coming up at a +2. She got to eat her first meal. They began to give her the insulin shots. The nurse brought me a binder about diabetes. She brought me some syringes and saline to "play" with. I pretended it wasn't there. I wanted to hit someone or something. I wanted to go home and pretend I never took her to the pediatrician's office. But I knew I couldn't. And I knew I had to come to grips with this. I just wasn't ready yet.

Monday, December 26, 2011

Everything Changes

I've been thinking about starting a blog for some time. I wish it wasn't about this. On December 20th, my world changed. My 9 year old daughter was diagnosed with Type 1 diabetes, which she referred to as the d-word for the first day or so. This is our story.

A went for her 9 year well check up in August. She has diagnosed anxiety issues. She was practically hyperventilating when they suggested pricking her finger to check her her iron levels and glucose. My pediatrician decided it wasn't necessary right now. Her color was good. She was healthy. She weighed 86 pounds and hit the 90th percentile. If anything, we needed to encourage more healthy habits. We skipped the blood test to save ourselves the trauma of it all.

I signed A up for karate and began to encourage her to drink more water. I thought maybe I did too good a job. She was drinking several bottles of water each day and especially at night. By early November she was fitting into her clothes better and I assumed karate was toning her body. I thought it odd that she would sometimes drink 6-7 bottles of water a night. But I can't say I thought it was concerning. Then she started wetting the bed. I tried to prohibit the water at night. She would cry and complain her throat was so terribly dry. She started wetting her underwear throughout the day too. She has had some bathroom anxiety so I chalked it up to that.

I also began to get phone calls about once a week from the school nurse that A was in the health room with a stomach ache. The first time I picked her up and when we got home she seemed fine and played. From then on I told the nurse to send her back to class unless she had a fever.

By December, A had become very moody and had lost more weight. Then she got sick. She was coughing and congested and lethargic but it appeared to be your typical severe cold. I dosed her with sudafed and advil. She stayed home from school a few days. But since she never had a fever and never seemed to be in respiratory distress, I didn't call the doctor. I hate the doctor's office. Every time we go, we pick up new germs.

A was sick for almost 2 weeks with the cold. She was pale and appeared thinner and I attributed it to the cold. We had a holiday weekend planned up north with family and A was excited. On Friday night, she slept over at my parents. We were to leave for our trip Saturday morning. When we picked A up Saturday my mother mentioned that she thought A drank a lot of water, more than what seemed normal. She also was concerned about her color and weight. She thought we should take her to the doctor after the trip. I agreed. We drove north.

A was cranky. We tried to take her sledding and she was too tired to climb the hill. She complained of being cold even dressed in ski pants and wool socks. She sat in the lodge most of the day in her ski outerwear because she was too cold to take the off...even in the heated lodge. She refused to play out in the snow. A loves snow. We also went swimming at the hotel. When I put A's suit on, it fell off. It was too tight for her in August and now it was falling off. It made me realize how much weight she had lost.

Finally, we boarded the Polar Express train. A wanted water and her dad got her a cup. She drank the entire cup before we could sit back down. She wanted another cup. She did the same thing. She asked for a third cup. They were out of water. She pouted and cried to me that her throat was burning. She complained of "acid bubbles".

On the way home Monday, A wanted candy at the gas station. We got her a bag of swedish fish and I also let her have some taffy. When we got home, she went to the couch and fell asleep. I had to wake her for dinner and she barely stirred. It took a few tries to get her to come eat dinner. After dinner I put her on the scale. She weighed 68 pounds. My heart stopped. She had lost 18 pounds since August. I knew then something was terribly wrong. I debated taking her to the ER but my husband and I talked it over and decided to call the pediatrician in the morning and get her seen. Looking back it seems crazy that we waited, but we truly had no idea she was so sick. It isn't like anything we had experienced before. No fever, no asthmatic issues (like our son).

I called the pediatrician. They had a 9 AM appointment. They weighed her and got the same weight as me. 68 pounds. The did a blood and urine test. And our world changed. Her blood glucose was 386. Her urine showed large ketones. We were sent to the ER immediately. We were told to go straight there. Don't even stop to pack a bag. We found out later all her labs showed her to be in DKA and they were surprised she was conscious.

My husband met me at the pediatrician's office and we drove to Children's Hospital. A was crying because she wanted to go back to school. It was the day of the Christmas party. She didn't want to miss it. I cried as I drove. I had so hoped the pediatrician would tell me A was fine. I mean I knew she wasn't. But I was in denial.

Admitted to the ER at 68 lbs.

Taken in August 2012 at 86 lbs.

More in the next post...