Wednesday, May 4, 2011

The Day the Reign Came Down

I've been dreading this post. But I'm writing it, in hopes that it will be therapeutic for someone; maybe even myself.

Reign: (noun) dominating power or influence: the reign of law.

(verb) to have rule, influence, or control of any kind

Friday is May 6, and I will forever remember that date as the day our lives changed course and we seemed to lose all "rule, influence, or control of any kind". Two years ago this Friday we went to the emergency room with our 9 month old baby girl. When we checked in, she was extremely lethargic, vomiting, in pain, breathing rapidly, and her lips and fingernails were blue.

Just so you can't say I didn't warn you: this is going to be long.

That morning we got out of bed after a series of 30 minute naps that lasted throughout the night. Bug would sleep for 30 minutes at a time and wake up screaming and sad and with a very wet diaper. She had soaked her entire crib after about 3 hours. I knew it that wasn't normal, but she didn't have a fever and she would still smile at me and play with toys; so I continued on with our day as usual..... nervous and cautious, but still carrying on. As I fed her breakfast she seemed famished, and practically inhaled her food. I tried to get a few giggles and smiles out of my sleepy little one and noticed she was breathing differently. She was breathing rapidly through her nose; almost as if she needed to catch her breath but couldn't. Her fingernail beds were blue and her lips were headed in that direction too.

After a trip to the pediatrician, we left with a diagnosis of "Maybe an upper respiratory thing, she'll probably have a fever tonight and a runny nose" As the day went on, things got worse. By 3 o'clock her breathing was more labored and quick and she had started throwing up. We sat in my mother-in-law's living room trying to figure out what was going on. My husband was on the phone with the pediatrician letting them know we were coming back and his mom (who is a registered nurse and also a mother to someone with type 1) said, "I don't want to scare anyone but this could be diabetes". I don't really remember much after that. I had a feeling she was right.

We all got in the car together to head back to the doctor and I was already in that hazy-bubble-zone where you look and seem like a functioning adult... I was hearing and talking and interacting, but everything seemed to be going on around me almost on mute, or with a very low volume and very hazy. I sat in the backseat with my baby and I stared at her, so confused and afraid.

We sat in the room talking to the pediatrician who predicted this to be a virus, until we asked that she check Bug's blood sugar because everything seemed to fit. I left the room, unable to look at anyone in the face. I sat on a bench in the hallway around the corner, breathing slowly, praying, and wondering if this was it. Was the beginning of the rest of our lives?

Still listening to the world on a very low volume I heard the nurse leave Bug's room, after checking her blood sugar, to talk to the doctor in private. Suddenly the bubble had burst and I heard it loud and clear...."Her blood sugar is 698! That is way too high, we need to check again.... oh my goodness, this is terrible" They didn't know I could hear them. They checked again and the meter only read "too high". (A normally functioning person has a blood sugar reading between 80 and 120.) A different nurse saw me in the hallway and asked if she could get me some water and told me not to stand up.... I must have looked a little bit like I hadn't slept the night before and had just heard that my baby has a chronic illness she will be fighting for the rest of her life.

I sat on that bench for 30 more seconds and listened to the doctor tell my family that we needed to go to the ER right away. I knew they would come around the corner any second and then this would all be real and I would have to start dealing with it. They turned the corner and I stood up.... which took more strength than you can imagine. We walked to the car together in tears and disbelief. I didn't want to hold Bug or even look at her because I didn't want it to be real; I wanted it to be a bad dream I could wake from.... instead of my life. I called my parents on the way to the hospital to tell them what was going on and they were on a flight to be with us almost immediately.

We arrived at the ER and met my husband's older sister who (also a physician) was working at the Children's Hospital that day. She led us straight to the check in and hand picked the doctor and nurses that would be rescuing us. The doctor said she had "Gone into DKA- Diabetic Ketoacidosis" Her blood sugar had been so high and her body was working so hard to get rid of the unused carbohydrates that it had been burning muscle instead of fat. Over time, this caused her blood to be acidic which caused all the symptoms I listed earlier and made her hurt all over. She would cry when we touched her. The doctor told me he was glad we were there because if she had gone to sleep at home that night, she would probably have gone into a coma. We sat around the room and watched the team lay our baby on the bed and hook her up to IV's to rehydrate her and calm her down. She looked so tiny.

We were in the ER for about an hour, maybe, before they sent us up to the PICU. I remember feeling relieved because we were at the hospital and all the tubes and needles were going to somehow make my baby feel better and go back to being the happy baby she had always been.

That night my parents arrived, our friends brought us dinner and our team started to assemble. My husband went home to sleep in a bed so one of us could be functioning during the daytime and my mother-in-law stayed with me and Bug in the room that night. I "slept" on the bench/bed in the room while Bug rocked with her grandmother all night long. She was still in too much pain to sleep on her own so holding her was the only way she would get any rest. I laid in "bed" and watched the clock all night, waiting for the nurses to come in for the hourly blood sugar check to make sure it was coming down.

After a night and a day in the PICU we were moved to a different room and the drama continued:

High blood sugars

low blood sugars

great nurses

bad nurses

arguments with nurses

blood drawing

friends visiting

diabetes educators


equations and math

books books books


new teeth.... yes she got her two top middle teeth in the middle of all of this so there was.... tylenol

weird chairs that turn into slightly bigger weird chairs for tired parents to "sleep"

vending machines and hospital food

After 6 days and 6 nights we left. We left with a smiling baby girl wearing a new outfit from the hospital gift shop and a brand new insulin pump. We arrived home to an amazing meal from a family friend and we were pleasantly surprised to see our little Bug crawling around the house wearing her pump, and not missing a single beat. She played and giggled and acted like the days before had never happened. She was as close to fixed as we could have asked for.

We jumped into our new normal with both feet and 4 days later, we were at the beach with some of our closest friends. Two years later, we are taking it day by day and all in stride.

We have lost all control and rule over our lives and we are surrendering to the Lord and basking in His dominating power and influence.

"And the trees said unto the vine, Come thou, and reign over us."

Judges 9:12

*symptoms of Juvenile Diabetes*

Weight loss

excessive urination

excessive thirst



Irritability or change in behavior

blurred vision

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