Our NEW Road...

I appologize for the long delay in posting. We had a week of crisis, followed by some time of computer/blogging issues. I'm finally able to update the blog from Barry's computer, so here goes...

On Sunday, Dec. 7 2008 our life was changed forever. Erin had been sick with what we assumed was the flu since Friday night. Although she vomited on Saturday morning, she begged me to still take her and Alana to the Little House Christmas play in Eau Claire that her Brownie troup was going to. As she had been able to keep down some 7-Up, Saltines and popsicles I agreed...although she looked horrible. I described her as looking like a Holocaust victim. She made it through the play without incident, although I know she regretted going, but then threw up again at about 5pm Saturday night. As we went to bed Saturday night, however, she had kept down some applesauce and popsicles and was still communicating with me well.

She was very restless all night, but had complained of the body aches associated with the flu. Her breathing also became very rapid. By early Sunday am, Barry wanted to take her in to Urgent Care in Eau Claire. Unfortunately, I resisted, as I didn't want to traumatize her, knowing that 99% of the time they'd say, "She has a viral infection and needs fluids and lots of rest." After talking to a good friend, she thought I should take her, and she'd cover for me at Sunday School. We dropped Alana off at Sunday School and made arrangements for her to go to Barry's sister's afterward and took off to Urgent Care.

It's funny, but after finally making the decision to take her, I finally came out of my denial and knew that something was wrong. But I still couldn't figure out what it could be, besides the flu, and I knew she had had enough fluids to not be seriously dehydrated. I prayed the entire drive (30 minutes) like I had never prayed before. Instead of praying for her to be alright, I prayed for acceptance of God's will. I've never prayed for that before, so I know that, instinctively, it was bad. I just wished for her to survive.

At the Urgent Care, after too much delay for our sanity (and Erin's health) the doctor asked about increased urination and thirst. Well, yes, actually. Erin and I had both noticed starting on the day after Thanksgiving that she was very thirsty all of the time. But, we had all been passing colds around, so this seemed normal...but I filed away the info. Now the doctor said he wanted to test for Juvenile Type 1 Diabetes. Barry and I looked at each other and we both instantly knew...that was it. My heart was physically gripped with fear. The doc sent us downstairs to the lab, and while we waited (for too long) we both began panicking...if this was diabetes, then was she slipping into a diabetic coma? She was unresponsive, yet awake...her eyes were rolling back in her head...and she had rapid breathing. When we were finally called into the lab, the lab tech said, "She should be in the ER, NOW."

Off we went to the ER a few minutes away...now we knew it was a matter of life and death. They were waiting for us and got us back immediately. I can only describe the experience as feeling like you were in the middle of an episode of ER or Grey's Annatomy...except this was OUR baby. There were WAY too many people working on her, sticking WAY too many tubes and needles into her. She was still unresponsive. First I heard them say that she would be admitted to the hospital. "Oh, God!" A bit later, her blood glucose came back as 1380 (normal is 70-120). "Oh, God!"

As we were on the phone in the hall calling family, the doctor came out to tell us they were going to fly her to Rochester. In our neck of the woods, that is one thing you do NOT want to hear. That means that it is serious...critical. Eau Claire does not have a PICU (pediatric intensive care unit) and that's where they wanted her. Only God's hand kept me from dropping to my knees. I sobbed. I called Rick & Lori, who were on the way up to EC and told them to wait. I called my sister, and she immediately said she'd meet me in Rochester. Unfortunately, I had to leave a message for my mom & dad.

Unfortunately (or fortunately) it was snowing too hard in Rochester for the chopper to fly, so we'd have to go by ambulance. This was good because I'd be able to ride with. I can't imagine putting my baby on a chopper and arriving a couple of hours behind her. We were in Rochester by 2:15 Sunday afternoon. I can't tell you how long that drive was. How I just physically seeped in guilt...why didn't I bring her sooner? What if she dies?

The rest of the day was a big blur. Amy picked up Tony and arrived not long after we did. Barry arrived a little later after stopping in Mondovi to talk to Alana and to pick up a few overnight necessities. Mom & Dad didn't check their messages, so didn't know until Amy called them about 4pm...they came right away. They had to take her blood sugar down slowly so as not to shock her body. Luckily, by 10pm, she was awake enough to recognize every one in the room and to know where she was. Now we knew our girl would make it.

Barry was able to spend the night in the PICU in a guest room...I slept on the couch in Erin's room. Erin woke me up twice during the night...first, she wanted to go to the bathroom. I explainded that she had a cathater in, and should just "go". A while later, she woke me again. And after asking me, "Where'd you get that thing in your mouth?" (a cough drop...now I knew my girl was coming back!) she said she really had to go. I again explained she could just go with the cathater.

I was woken up before 7am by the endocronologist (the diabetes person) which would set our daily schedule for the rest of our stay. When we were alone, I explained to her all that had happened, and then I broke the news to my 7 yr old baby that she had a very serious, life-long disease. How do you tell a child that? How can she grasp such a huge concept? Luckily, God blessed me with the right words for her, and I believe, continues to do so today. We've also been blessed with a stubborn, independant, and intelligent daughter who is very perceptive.

With snowstorm on the way, Barry left about 10am to go back to Mondovi for clothes and Alana. Right after they got back, about 4pm, we were moved out of PICU and into the general pediatric floor. Monday night was marked by a visit by Zach, a huge black New Foundland. Luckily, Barry and Alana were granted a room at the Ronald McDonald house a couple of blocks away, which was a huge financial burden lifted from our shoulders. I again, slept on the couch in Erin's room...this one much worse.

On Tuesday, we began our diabetes education...first with the dietician (who was fairly impressed with our (or my) nutritional knowledge and habits) and then with Tom, our diabetes RN educator. At this point, Erin was known by the doctors and nurses as being "very quiet", which will bring a smile to those that know her well. During our training with Tom, she just stared blankly, and we didn't even think she was listening. That night, however, when she and I were alone once again (and staying up waiting for our 11pm labs) the questions started pouring out of her. What are the needles for? What is the tester and poker? Can she try to inject into the orange, too? This made me so happy...she was paying attention and showing her intelligence and independant tendancies.

By Wednesday night, the questions turned emotional. Would her friends laugh at her? What if people thought they could catch diabetes from her? It broke my heart to have my little girl have to shoulder such worries. At this time, her blood glucose was still in the 200-400's. Finally, on Thursday, she was back to her old self...talkative, hyper, running up and down the hall, playing Wii sports in the playroom. We were blessed to get the ok to go home. We stayed for dinner, just so we wouldn't have to deal with it on the road. We got home about 9pm Thursday night. Joy was felt by all...especially Cassie!

Erin hit her first "low" at the Thurs night 3am check, just as Tom had predicted. This brought happiness to us, as she wasn't sky high anymore, but also a new fear...how to deal with the very dangerous low. Friday was spent doing several loads of laundry, running to the pharmacy, creating Excel charts to record everything, stocking the kitchen with needed food...etc. Barry went to work Friday night, and we got a visit from our awesome friends Claire and Kari, who stayed for dinner.

Saturday we began our much anticipated and much dreaded "program weekend", which constituted of two back-to-back practices on Saturday am, the Friendship Church musical on Sat night, Sunday School and our church program Sunday am, and the 2nd Friendship program Sunday afternoon. My mom and dad came around lunch time with a bunch of groceries...what a blessing!...and lots of emotional support. Erin attended both practices on Sat am (with us there) but chose not to sing at the program Saturday night. I'll show pics at a later time, but it was an absolute fantastic show! The girls' choir director has a 19 yr old son with diabetes, so she was a huge support for me on this very stressful weekend.

As I had hoped (just so she could get back on the social horse) Erin participated in both programs on Sunday and did an excellent job. :)

Monday we vegged. No school. Took a nap (those 3am checks and up at 7am really add up after a trauma such as this!) Since then we've been adjusting to our new life. Erin has had bouts of anger. One of them was Saturday night following the Friendship Musical because she couldn't have a cookie like everyone else. The tantrum really wasn't about the cookie...it was about the diabetes and how unfair it is. I encouraged her to get her anger out as this is a very normal part of it. So far, until the last couple of days, I've been really "up" emotionally. After nearly losing my baby, diabetes seemed like a very small price to pay to bring her home. And I'm fully aware of how much worse it could be. Erin has the potential to live a normal life...lots of kids don't. I pray every day that God will grant me the grace to accept this new life and his purpose for Erin. So far, it appears she holds no anger towards God, and understands that his will goes beyond our own understanding.

I can feel myself coming down off of the adrenaline high...the "mother mode" where you act on autopilot. I'm starting to let myself feel anger and self-pity....loss of a life we had. In one day, our world was turned upsidedown. We're really still trying to find our footing. Add to this equation the fact that it's Christmas, and it's a bit chaotic. I've given up on the idea of Christmas cards. Shopping was quicker and simpler than planned, due to the impending financial doom.

There will be obviously more to come on this subject. If you've stayed with me here this far, you're a trooper! I wanted to be sure I got this down, as this blog not only serves as my update to family and friends, but also as my family journal. So, you may often get more info than needed! :) Thanks to all of you for your prayers and thoughts. They are much-appreciated and needed.

God Bless you and Merry Christmas!