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| Taylor and her friend Jenna, on our way to the movies. |
December 21st has always had special meaning, in 1984 my little brother was born and in 2000 our first daughter was born. This year on Decemeber 21st our life again was changed forever. This is the day that our youngest daughter was diagnosed with Type 1 Diabetes.
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| Caitlan & her friend Abigail, at the theatre. |
We woke up early that day to take the girls to see the movie Tangled for Caitlan's birthday. Caitlan and Taylor both brought a friend. It was a special day, so I allowed each of the kids to get candy and a small drink of their choice, including soda. We all know I am the soda Nazi so I still find this ironic that I allowed this on the very same day all this came about. During the movie Taylor drank the equivalent of 48 ounces. She drank her own, asked for mine and then asked for her friend's. This was my first red flag of the day. We ended up running to the bathroom 2-3 times during the movie (not uncommon for Taylor). Then after the movie we walked to the restaurant. Taylor ran and played on the walk and had to used the bathroom, yet again, at the restaurant. As we were ordering lunch, she announced that she wasn't hungry and only wanted a drink. I soon learn she that she wasn't hungry because her stomach was hurting too much to think about eating. She ordered a 20 ounce Gatorade and drank the whole thing (except for the small amount she kindly shared with her friend). The wheels in my head were turning, as I sat waiting for the food I was thinking about all the little red flags I had noticed throughout the day. As our food arrived, I realize I too have lost my appetite. I grabbed my phone and google diabetes symptoms for the 200th time in her 7 short years. I knew we were teetering on the edge of DKA (diabetic ketoacidosis) and like a light switch I knew it was time to head to the doctor.
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| Our view from the window in Taylor's hospital room. Can you see the helicopter on the roof? |
Taylor had made plans to go with her friend so first I went to the doctor's office without her. I think I secretly wanted them to tell me I was crazy. I asked to speak to her pediatrician, but she wouldn't see me without an appointment. I began to feel helpless, but the nurse in me afford me the courage to fight for my patient; my daughter..after all isn't that what we nurses do. I started to explain why I was there and at the same time began to feel as though I was over reacting. Like what I'm saying sounds so absurd. These people aren't going to believe me. They are only going to see this hysterical mother. I couldn't even get the words out. I found myself crying, and all I could say is "I don't know what to do". At this point I wanted to talk to the doctor. I didn't want the office manager to talk to me...I knew what I was talking about and I knew why I was there. I want to talk to someone whose degree says she knows more than me. The doctor still never came to the office where I was crying, but I was told that if I went to get Taylor they would fit her in to be tested that day. I left the office as quickly as I arrived.
When I returned to the doctor's office, we spent a few minutes in the waiting room. It was like I was looking at Taylor for the first time. Suddenly I was seeing her through nurses' eyes. My beautiful little girl with her pink flushed cheeks and her dark red lips was the poster child for dehydration. Her urine that I had to beg her to allow me to catch in a cup was as clear as tap water. God must have been holding me up at this point, because looking at that specimen cup as I placed it on the counter to be checked, I felt as though I could've past out right there. Sitting in the room, the medical assistant came in the do her vital signs and check her blood sugar. Attempting to hide the results of the blood sugar meter with her shoulder, I look over and notice that it says "HI". HI for that particular meter means >600mg/dl and normal is about 70-120. The rest is like a world wind...the next thing I know we are being handed a little pink post-it with direction to the only pediatric endocrinologist in the area (40 miles away). We were told not to go home but to drive straight to the doctor's office.
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| Just arrived to the hospital. |
I did end up driving 3 miles to my house. There was no way I was doing this without my husband who was at home cooking Caitlan's favorite dinner for her birthday. I called my brother on my way home to have him pick up our older two. I walked in the house to tell Tommy. I must have scared the daylights out of him, but I wanted to say what I had to say before the kids followed me in the door. "The tests were positive. Taylor has Type 1 diabetes and we need to go to Melbourne right now. She's going to be admitted to (the hospital) for a few days and that's all I know for now." I didn't want to alarm the kids especially because I hadn't had a chance to talk to Taylor. My brother arrives, and he drives off in one direction with 2/3 of my babies, while we drive in the opposite direction to save the life of our littlest.
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| One of the therapy dogs brought in for the kids. Taylor thought he was so neat. |
When we arrived at the doctor's office, they smile and say they've been expecting us. We are taken back to an exam room after they weigh Taylor, recheck her urine and blood sugar and do her vital signs. In this room, we are given two bags of stuff. I think to myself "You're a nurse, you know what this stuff is," but I can't bare to look in the bags. The doctor comes in, says alot of things that I already knew, but could barely focus on his words. It wasn't until the end of the conversation that I realized that Tommy was hearing all of these things for the first time. I had taken for granted that I knew what was being said because I learned it in nursing school. I will never forget the look on his face when he realized this was life long. Soon the doctor was asking if we had any questions and then left the room. I looked at Taylor laying on the exam table playing a game on my phone. I rubbed her leg and said "do you have any questions?" Without missing a beat or even looking up at me she says "I just think I'm going to die". As I walked over to the door to call the doctor back in the room, he comes walking back in, and matter of factly looks my baby in the eye and tells her "you are not going to die". He then explains again to her that she will need to check her blood sugar and give herself the insulin that her body doesn't make...but that she "is not" going to die. When your child says those words and you can't fix the problem...that's a pivotal moment.
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| She called the IV a cast. |
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| Sister signing her "cast". |
We went to the hospital to be admitted. As soon as we walked in the door she was showered with gifts. There was an older man and woman volunteer at the admitting desk, who gave her a checkers game, a big pencil and a stuffed animal. When she arrived to her hospital room, there was a brown bag with a coloring book and crayons, a little game and a few more stuffed animals. The nurses brought her another board game for the pain of having the IV in and we woke up with a huge stuffed teddy bear at the foot of our bed with a note on it that said "Have a great day Taylor". The next few days we learned to take care of our daughter. As her blood sugars came down and she became more hydrated we began to see our vibrant, funny little girl emerge again.
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| She loved having us sign the "cast". |
The symptoms had come on so slowly that it was hard to see how they had changed her into a different person, but now we were beginning to see a different yet familiar smiling face appear. Her energy increased, she wasn't waking up in the middle of the night to go to the bathroom and we had successfully demonstrated that we could manage her care at home. So, less than 48 hours after being admitted (on the very same day that we brought her older sister home from the hospital ten years earlier) we were discharged home to enjoy Christmas as a family.
Today is two weeks since Taylor was diagnosed. We are beginning to find a new normal and learn what it means to have a child with diabetes. There is so much to learn and we are approaching this together as a family. It's hard to believe that one day I am going to turn all this responsibility over to her, but like anything else in this life we will do it one step at a time. **I'm very proud to say that she has already checked her own blood sugar TWICE.
2 comments:
I just read your post about Taylor's diagnosis. It brought back many memories for me. I have two children with Type 1. My daughter is now 8-1/2 and was diagnosed almost 4 yrs ago. My son was diagnosed last year at 2-1/2 yrs old. We have no family history of Type 1. My kids are both pumping and are doing quite well, despite some bumps in the road. I hope Taylor is also well and thriving. I read your post on another blog regarding the ketone meter. I wouldn't be without one. I use it frequently, especially with my son. Because he's so young, he is much more fragile and runs in the higher numbers more often. Ketones are not uncommon for him. Because he's pumping, there is no long-acting insulin in his body, so they develop more quickly if there's an infusion set problem. My daughter seems to be more regulated now that she is getting older. When she was younger, she tended to spill ketones more frequently. Good luck with Taylor. It sounds like she's in good hands!
Thanks for commenting Jonna. I have to say even though life isn't convenient for us,it is good. We are learning how to manage things that come up with Type 1. We are even learning how to manage other people's suggestions and comments (most who have no idea what it's like to have a child with Type 1). We are coming up on the year anniversary of her diagnosis and I am in a way better place than I was 6-9 months ago. I spent several dark nights mourning my baby girl like I had lost her. And many other nights feeling guilty for the nights I spent mourning. I have come to the realization through much prayer, learning and time that we are all going to be ok. If you would like to talk more, email me at derdwein(at)yahoo(dot)com. I'm sure we could all use some encouragement from time to time.
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