I wanted to blog about this mostly to vent out my feelings.
On Wednesday, February 24th I decided to take Anneliese to our pediatrician to get checked out. For about a week she had been drinking really well, I'm all for encouraging my kids to drink water but it had recently became a little... obsessive. On Sunday she was requesting drinks more often and asking for them at bed. Still not unusual but a little more than normal. Monday she was still being a good drinker and we noticed that she was drinking so much that her diapers were getting filled up very quickly. I mentioned to Zach that maybe we should take her in and have her looked at but the thought of taking your daughter to the Doctor just because "she's drinking a lot" seems weird. Tuesday my Mother-In-Law watched her so I could work. She also made a comment to Zach when he picked her up that she had been drinking often and had some pretty full diapers. So here we are on Wednesday. She woke up with a full diaper and was already asking for a drink. I talked to Zach again about taking her to the Doctor to have her checked out and he agreed that it was odd. She was asking for a drink about every 10 minutes by this point. This is my 4th child and especially at 2 years old... drinking water is normally not this high of a priority. There's other more important things to worry about like coloring on my walls and holding the cereal box upside down as you run through every room of the house. Drinking water constantly... not usually that high on their to do list.
We made the appointment and I felt pretty stupid talking to the nurse. I remember saying "I know this is a weird thing to have checked out but she's drinking a lot more than normal so I thought I'd just make sure everything is OK.... you know... that she's not flooding out her electrolytes or anything." I had a friend on Facebook who had taken her son in for the same reasons and that's how they found out that he had diabetes. I was confident that Anneliese didn't have anything like that, I was thinking she probably was just going through a weird phase or had a sore throat and the water was soothing or something like that. The Doctor finally saw us and told me that it's probably nothing but they would do blood work anyway just to make sure everything was OK. Diabetes, like my friend's son had, was extremely rare so it probably wasn't anything like that.
He called me an hour later with the blood test results. He was very calm on the phone... too calm... sugary sweet soothing calm... the kind of calm where you think "Why is he being so nice to me? What's wrong?" and makes you PANIC kind of calm. He sweetly said that "Normal blood sugar levels are between 100-200 and hers were 534. Just to be on the safe side I should take her to Primary Children's Hospital. They'll do some more tests there just to make sure it's not diabetes." He was sending over all the paperwork so that it would be there when I arrived. I should just "check in" with the emergency room and they would have a Doctor that specializes in this there for me to talk to.
Well... not so bad. Just more testing. She's acting perfectly normal other than asking for drinks constantly. I did give her a couple of Tootsie Rolls before we went to the Doctor, I didn't tell the Doctor that... so I'm sure those just elevated her blood sugar level and when we get to the ER I'll probably be embarrassed that we made all this fuss over tootsie rolls. I take my time getting her ready. I make sure she eats lunch because this could be a while. I pack an iPod with some movies & ear phones, snacks, water and her blanky. Zach is going to stay and take care of the other kids just in case I'm there for a while, we could have a long wait. We finally leave at about 1:30 in the afternoon. I walk into the jam packed ER waiting room and we check in. They have my paperwork right there on the desk from the Doctor when I tell them our name. Wow it's nice to have people organized! We have a hard time finding somewhere to sit. Was there a memo sent out or something that this was the place to be? I just get situated and they call Anneliese's name. Wow! That was FAST! We must be seeing a different Doctor than what most of the people are here for. Anneliese is hopping happily along the side of me as we are taken back through the doors.
They check all of her vitals, weigh her, take her temperature and draw blood. "Do you know why you're here?" the nurse asks in a rush. "Yeah, I guess normal blood sugar level is 100-200 and Anneliese's blood sugar level was 534 so I guess that's high. The doctor wanted me to bring her here so you guys could test and see if she might have diabetes or something." "Well... she does have diabetes, there's no question. She has Type 1 Diabetes or it's also called Juvenile Diabetes. We'll have the blood test back in 5 minutes to figure out how to stabilize her." I'm left wondering what she's talking about. Stabilize her? She's twirling around in circles right now to the music on the iPod. She's perfectly fine! Can't they see that? Well... they'll see that it's a mistake when they get the blood test back in a minute."
The nurse returns "You're very lucky it looks like everything else is at perfect levels and all of her vitals are spot on. Her glucose level is at 486 so we'll adjust her for that. What made you even think to take her to the Doctor?" "She was drinking a lot and I thought it was a little strange." "Well good for you Mom. That's excellent! Do you have any questions?" I just stared at her and my mind was trying to think of what to even ask. She asked "Do you know anyone that has diabetes?" "Oh yeah... my Dad is border line Type 2 Diabetes so, yeah, I know about it." "Well don't worry. She'll still be able to have children, she can be anything she wants to be, a ballerina, a hockey player, an athlete of any type and it won't matter. It's nothing like it used to be when kids used to lose arms and limbs and go blind. The medicine we have now is so much better than it used to be." "What? Kids go blind and lose arms?" "Well... not anymore but they used to." "Ok NOW you're freakin' me out! I didn't know about that." She laughs. "Sorry. Do you have any questions?" "I gave her a couple of tootsie rolls before we had the test at the Doctor so..." " No, she could have eaten an entire chocolate cake with vanilla ice cream and sugar cubes on top and it wouldn't have made her sugar levels spike this high." "So there's no way that..." She interrupts again. "We're POSITIVE that she has diabetes. No, there's nothing else it could be, her pancreas is just not producing insulin." Wow, she's done this before. "For the last year we pretty much only eat organic food, no hormones in our milk and cheese, free range grass fed beef & chickens that were not treated with antibiotics, we've only eaten at McDonald's... like... twice, we don't have junk food and snacks, sugar is a treat and not a common thing at my house, we have an air purifier and a water purifier that purifies ALL of the water in my house, I don't understand how she..." "It's nothing you did or could have done, we don't understand why it happens, it could be genetic or something in the environment or from a virus, we're not sure, but there is absolutely nothing that you did wrong and NO way you could have prevented it. Do you have any other questions?" "I can't think of anything else right now." "We're admitting her. She'll be here for about 3 days. We're moving you to a "clean area". Most of the kids are here for RSV and we want to make sure she doesn't get sick." We were put in a small waiting room with only a couple of chairs. We stayed there without anyone talking to us for about an hour.
Then we were moved into a tiny ER room that had en exam bed, a chair and no windows. We stayed in that room for about 3 hours. 3 hours with a 2 year old that doesn't realize there's something wrong with her and she is bored. The nurses popped in every once in a while and asked if I had any questions. It was now about 6:00pm and I asked if Anneliese could eat dinner. NO. She could have a snack but only if they get the OK to give her insulin from the Doctor. A while later they brought in some cheese & crackers and gave her a shot. She cried from the shot. The nurse came in again and I asked "Why do we need to be admitted? Can we just make an appointment with the Doctor and come back?" "No she has to be admitted." "I guess I don't understand why. I mean I get that you say she has diabetes but why do we have to stay for 3 days? Can't we just make appointments?" She got very serious. "I know it's hard for you to see the urgency because your daughter looks perfectly fine. You have to know that you're lucky. Most Mom's that find this out have just come with their child in an ambulance, they don't just drive up and walk in with their child dancing along beside them. Most Moms find out their kids have diabetes because they're throwing up excessively or they had a seizure or they're in a coma. Most kids that come in need to be in this bed with an IV strapped to them while we fight to try to get all of their levels normal. If you would have waited another day, maybe two days to bring her to the Doctor than that would have been her. That will be her if we don't keep her stabilized." "Oh......" The seriousness of the situation clicks. I ask "Are we staying in this room for the 3 days? Are we waiting for the Doctor" "No, we're trying to find her a bed in a room of her own. The hospital is over capacity and we don't have anywhere available. Most of the other kids have RSV and we want to make sure she doesn't get sick. We're trying to find a "clean room" that's away from those kids." We finally got a room about 30 minutes later.
Our room had a nice big window, a few chairs, one of them was a chair that could fold out into a bed for Mom or Dad. The ER room we were just in had nobody coming in, no information and we were just sitting. Once we got in our regular room we were bombarded. There was rarely a moment where there wasn't a nurse, technician, doctor, dietitian or pharmacist in our room. By this time Zach was trying to get our other kids dropped off and get there, my Dad had just showed up and the nurse was talking about how your pancreas works and what's wrong. I finally asked "Yeah but if we just change her diet a little bit than she won't need the insulin shots as much, I mean if we mix proteins with carbohydrates so they help each other carry through and... " "No. There's no diet. No matter what, she will have to have the insulin shots every time she eats." " Well... but with my Dad he can..." "Your Dad has type 2 and that's totally different. His pancreas is still working it's just resistant. It can turn into type 1 where the pancreas shuts down if he doesn't take care of himself eventually. Type 2 is what most people have. That's what most people know about. Type 1 is rare. Anneliese's pancreas just doesn't work like it's supposed to, it doesn't make insulin no matter what. You have to do the job of the pancreas by giving her the shots." "She HAS to have a shot... every time she eats. No matter what." I'm in total shock. I walk away with my hands squeezing my head. This is just too much to think about. She looks perfectly fine, everything is fine. They have to be WRONG! This can't be right. I turn to face him again. "Will her pancreas ever fix itself will she always have to... " "She'll have to monitor her blood sugar levels and have the shots every time she eats for the rest of her life. This will not fix itself or go away." Whoa! For the rest of her life? She's only TWO! I feel like screaming! I feel like crying! This is too much, way too much. This can't be real. I don't have time for all the emotions right now. "OK, what do I do? Tell me how to take care of my daughter."
The next 2 days were packed with information and lessons. How do we prick her fingers and collect blood. What does the result mean? What can she eat? Turns out anything, there's no restrictions. If she eats something with a lot of carbohydrates that can turn to sugar than I need to give her more insulin to offset it. I do the job that the pancreas would do only it's figured with math equations and shots of medicine instead of done automatically by her body. Zach and I were not getting much sleep and we're trying to trade our other kids around so we can learn how to take care of our youngest one.
Anneliese would cry about her "owie" every time we had to prick her finger and get a drop of blood to test. She would try to yank away and throw a tantrum when she saw us coming at her with the shot of insulin. By the end of the 2nd day she had been pricked and given shots so often there was little if no resistance.
We had to leave earlier than most. The hospital is packed and they need the bed. We left yesterday and I felt uncertain. It had been less than 48 hours since we found out. Now... Anneliese holds out which finger she would like us to prick. She holds perfectly still with out a flinch as we give her the shots. This, more than anything disturbed me yesterday. I should be grateful I suppose that she's making it so easy but I couldn't help the screaming in my head as I grabbed her skin and plunged a needle in her tiny leg while she watched somewhat disconnected to the whole thing. She's already used to it. A two year old should not ever be used to seeing blood come out of their fingers 6 times a day without crying about their "owie" and asking for a magical band aid. They should not EVER have to get used to having things injected into their small arms, legs and little behind, they should be squirming, screaming and fighting!
As the day went on I felt more confident that we were going to be just fine. It's now Saturday and I just sent a message to the Doctor to find our what her doses should be today. It changes constantly because they're still trying to figure out how her body is handling everything. We'll be fine.
I figure all of my children have something that I need to monitor & fix with shots of some sort. My oldest one, Hailey, (although she's sweet, fun and kind) lacks focus and needs my constant reminding to stay on task. ("Get your shoes on sweetheart. Did you get your shoes on? Why don't you have your shoes on yet? It's been 20 minutes get YOUR SHOES ON!!") My 2nd child, Brooklyn has an attitude that needs constant adjusting. ("Try to think about others. Think before you speak and if it's not nice or positive... don't say it!") My 3rd child, Dylan, is gravity challenged. This mixed with his great stunt ideas are a dangerous combination. That kid is hard to keep alive! Compared with him... Anneliese should be cake! I guess what I'm saying is that each kid needs different things, this is just the thing that Anneliese needs.
