Thursday, January 1, 2015

Maura's Type 1 Diabetes Diagnosis

Maura got sick on Thanksgiving.  We knew she was pretty sick because she laid down for a nap when we got home from the movies.  She got up and sat with us for Thanksgiving dinner but didn't eat much.  She had been drinking a ton of water which I thought was great since she was running a fever.  On Friday, I took her in to Dr. McKinney, they did a flu swab and she tested positive for flu A.  We went home with a prescription for Tamiflu.  She took it only once and threw it up.  Saturday, she got progressively sicker.  I remember telling Charlie how needy she seemed to be which was pretty unlike her even when sick.  I just figured the flu was hitting her hard even though her temperature wasn't very high.  She napped 3 times on Saturday and continued to drink a TON of water which I thought was great because she was staying hydrated (I thought).  On Sunday, she was even more unlike her self, continuing to sleep a ton.  We took her to the Urgent Care in the late afternoon.  I had Charlie come with us to carry her in because she was so lethargic she didn't even want to walk.  They did a chest x-ray and said she might have a small spot of pneumonia.  The doctor said he couldn't explain the shallow breathing.  We left with a prescription of prednisone and an antibiotic.  She took the prednisone and fell asleep for an hour.  In that hour I pretty much decided we couldn't wait this out, she was too sick.  I called the nurse exchange and told them I planned to take her to the ER.  When she woke up, I gave her the antibiotic, she threw it up, we packed a bag and left for St. Lukes.  They got us in quickly, drew blood and 15 minutes later the doctor came in and said she has Type 1 Diabetes and we needed to transfer her to Mercy, Children's or Glennon.  

Char: I remember I was sitting on the couch reading when I got the text from Kathy saying Maura had T1D. I thought "Uhh... what? That seems unlikely. (Of course, over the next few days, I'd be reminded that my grandfather had T1D, so... not *that* unlikely.) Probably too soon to know." But it wasn't, it just takes the symptoms and blood test showing her elevated blood glucose levels. 

Urgent care breathing treatment we know now she didn't need but they were trying to account for how sick she was feeling and the possible spot of pneumonia.

They put in two IVs, one in both arms.  They didn't start the IV of fluids and insulin until we got to Mercy.  We were in the Mercy ER for 2-3 hours while they worked through the first bag of insulin.  They then moved us upstairs to the pediatric ICU.  

She kept drifting in and out of sleep.  She was such a trooper through all of this.  By the time we got to Mercy you could tell she knew she was really sick and they needed to do all the poking, prodding, blood drawing to make her better.  

I think I slept maybe 15 minutes that first night.  I tried to sleep in a chair next to her but ended up sleeping at the foot of her bed for awhile.  I get teary thinking about how sick she was and how lucky I feel that we got her into the hospital when we did. 

They worked through the three bags of insulin over that first 24 hours to get her out of DKA (Diabetic KetoAcidocis). The doctors and nurses were in checking vitals and asking her questions each hour to make sure she was still coherent.  She was so tired but was able to answer the questions "what is your name?" "where are you?"

Once we go through those first 24-26 hours, Maura improved dramatically.  She started to get some energy and alertness back.  She was starving and they wouldn't let her eat until those 3 bags of insulin had gone through her and we were ready to start insulin shots.  She ate a lot at first.  They explained to us that her body had been starving over the past three months because her body wasn't converting the glucose into energy.  So she would eat and drink like crazy and her body was not getting what it needed.  

Char: Insulin is what allows the glucose (sugar) in your blood to enter the cells of your body. Our bodies turn the carbs we eat (bread, candy, fruit) into glucose. Glucose is the kind of sugar that the cells in our bodies 'eat'. Because Maura's pancreas had stopped making insulin, it was like the pizza delivery guys (her blood stream) were showing up with pizzas (glucose) but no one had the keys to the front door (insulin) and so the people inside the house were going hungry (the cells in her body that needed the glucose couldn't get it, because there was no insulin).

She received a bag from JDRF with a teddy bear that she can practice giving shots on.  

Maura got to give a shot (of saline, not insulin) to dad so she would feel more comfortable with her own shots~ now that is love and trust, or maybe just love!

Sharon sent flowers and a frog.  She named her frog Bella.  Maura and I were snuggled in the hospital bed before going to sleep one night.  Maura had been craving hotdogs and Charlie was planning on bringing them the next day for lunch.  I asked Bella if she wanted hot dog flavored flies for her dinner.  With that, Bella bopped me in the face.  I told Bella that was rude, Maura agreed.  I then asked Bella something else about what she might like to eat.  Bella bopped me again and I suggested she go to time out.  Maura fully agreed to that too.  After Bella's time out, I asked her if I had said something that upset her.  Maura told me Bella was upset because I was talking to her about her diet.  So basically, Maura put together a whole play therapy session with her stuffed animal.  She is an amazing girl.

Char brought Maura 4 dresses to choose from so that she'd have one she liked when she left for home. Maura was excited when it was finally time, after 3 nights and 3 days, to get out of her hospital shirt and into a dress to head home.  She threw her fuzzy blanket around her neck as a scarf, and we were headed home to start figuring out our new norm.

Char: Type 1 Diabetes, the kind Maura has, is an auto-immune disease. Our white blood cells normally protect us from illness by attacking the virus, bacteria, and cancer cells that they find in our body. Auto-immune diseases happen when the immune system, for some reason, decides that some normal part of our body is actually an 'invader' that has to be destroyed. In the case of Type 1 Diabetes, the immune system destroys the 'islet cells' of the pancreas, where the body makes insulin. Now that Maura no longer has islet cells to make insulin, she'll need insulin injections to take the place of the insulin that would normally have been made by her pancreas. These injections are given with a 'pen' that has a skinny, short, super sharp needle that you can barely feel. We'll also need to monitor her blood glucose levels throughout the day. We'll have a tiny 'lancing' device that pricks Maura's finger so we can draw out a tiny drop of blood which gets wicked up onto a test strip and analyzed by her glucose meter. She can hardly feel the pin pricks from the lancing device. Unlike Type 2 Diabetes, where insulin 'resistance' is a problem, Maura can eat nearly anything she wants as long as we can figure out how many carbs are in it and give her a dose of insulin to go with it.

So this is our new normal, and it's really not too bad, as far as highly unlikely health problems your child may encounter, especially because of Maura's natural confidence and sunny disposition. Maura can already take her own blood glucose measurements and in the next weeks or months she'll start learning to use the pen to give herself her own insulin injections. By the time she's 20, figuring her carbs and insulin with each meal will be second nature and she'll be living an otherwise perfectly normal (and, knowing her, busy and challenging) life!

Everyone is getting a chance to figure out their blood glucose numbers.  

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