Sunday, September 4, 2011

The Moment that changed EVERYTHING!

What a week this one has been. I didn't think this blog would ever get this personal but I need to purge and I have so much to get out. You know those types of weeks or even those days...those moments that change your whole life...Well I had one of those. I'm going to back up to explain it all cause I just need to get it out of my system. I am about put on my writer's hat for just a few minutes.

Naima at the doctors office. iphone pic.
So: Lately Naima (my daughter) had been urinating frequently and being excessively thirsty. I mean, she would pee about 3 times in one hour. And she would ask for something to drink, then drink the entire cup, and then minutes later she would be insisting that she was thirsty. I knew something wasn't right but couldn't put my finger on it. The urination pattern started a week prior to the thirst pattern. It started slowly, but suddenly at the same time. She would have to go to the bathroom frequently. One day she had to go and we were in the car so I told her she had to hold it until we reached our destination. When we got there, we rushed her to the bathroom, only for her to get right in front of the toilet and pee on herself. I mean right in front of the toilet. Obviously I was upset (as the pattern hadn't quite set in and I didn't know yet that there was a reason for this). I made her sit in time out for like 10 minutes or so and looking back now I feel so bad because I realize that she couldn’t help herself. Fast forward a day or two and we are at the arboretum for a jazz fest and she had to go to the bathroom about three times. Once was right when we left and then we drove maybe 20 minutes to a restaurant to get something to eat and she had to pee again right when we got there. It was after 8 so I didn't let her have anything to drink (only a sip to wash down her food) because since she was going to the bathroom so many times in the night (once 3 times in 1 hour) and a couple times peeing on herself in her sleep, she couldn’t have anything after 8 thinking that would prevent the pattern. It didn't. All these things were odd, and I made note of it, but I thought that she was just drinking too much during the day and that is why she was urination so much. She had been potty trained since she was 2, so the peeing in the bed thing was highly unusual. She would even pee on the sofa if she fell asleep there. It started to become obvious that she simply couldn’t control her urine in her sleep and not that she was just having accidents. It wasn't until the thirst pattern began when I knew something was really wrong. I begin to suspect that maybe it could be a UTI. This was towards Friday and I had to work the weekend and so I decided to hold off and see if the pattern continued a few days and if so I would make her a doctor’s appointment. The pattern continued and the thirst pattern over the weekend grew intense. Monday morning I had two photo shoots scheduled so I was like I'll make the appointment for Tuesday. The early one got cancelled so I decided to go on and take her in and that I could drop her off home (my mom happened to be off that day and her daycare was closed this week) and then go to the second shoot. It turned out that when we got to the doctors and I explained what was going on, the nurse asked if anyone in my family had diabetes. I said yeah, several (type 2). I couldn't fathom that Naima would be at risk based on that, as theirs was all more lifestyle related--and Naima's lifestyle was at least slightly better than the average kid her age. She wasn't the healthiest child by any stretch. We both skimp on veggies sometimes, but we ate lots of fruit and I did my best to limit her junk food consumption-particularly at home (though that was often a battle with my mom always buying things I asked her not to and Naima wanting and often getting those things. Things like pop-tarts and fruit snacks. I had just stopped fighting it long ago. Also her daycare snacks were horrendous on most days-but that too was a battle I didn’t have the energy to fight-so I just let it be, and when I could I tried to get there early enough to get her before snack time).

Anyway, after checking her urine and a blood glucose reading, they sent us straight to the ER. I cancelled my shoot and scooped up my mom and we took her straight to the hospital. We were there for a while and they concluded that she had type 1 diabetes. I went numb. I couldn't believe it. At the doctors her blood glucose was 500 by the time we got to the ER and checked it was at 600. They admitted her and we were there from Monday until Thursday night.

In ER. Nurse drawing blood from her IV tube. iphone pic

I must say first that Naima was a soldier. She handled everything with so much was really amazing. She lightened up everyone's day in the hospital. They couldn't stop raving about her. She was so still for the needles and didn't cry not once. Well not about the needles anyway. When she did cry, it was because she couldn’t have something she wanted to eat. That was the hardest part for me…and still is. Restricting food to a 3 yo who doesn’t understand why she can’t have XYZ is not an easy task.

She didn't really need this band-aid. But it made her feel better. It was Dora! ;-)

The hospital stay was stressful to say the least. They were not able to get in her a normal range. She kept jumping from high to low blood glucose levels. It was either the first or second night where she was very lethargic. I just assumed she was sleepy and was tired from such a long day. The doctor noticed that her lips were pale and it turned out that her glucose was low they had to give her juice, then next morning she was back high again. I just couldn’t make sense of it all.

Naima eating her breakfast and watching TV.
Smiling for the camera. She didn't let nothing steal her joy!
Over the three days, there was lots of education thrown at us. There was a diabetes specialist named Steph who came and taught us about diabetes, the do’s and don’ts, and how to use the glucagon pen if need be, and the signs of high and low BG (blood glucose) etc. etc. The nurses and staff were all nice, of course except for one lady. And we got her for two different nights. Go figure. She was there the first night and the last night. Her bedside manner was totally missing. The only other person whom I wasn’t feeling was the dietician. That’s because she sat there and lied to me in my face to try and tell me artificial sweeteners are safe for consumption like I was some dumb Joe off the street who didn’t know better. After that-everything she said to me went in one ear and out the other. I mean, I do realize that conventional medicine doesn’t accept these evident truths-but when I tell you why she can’t have anything with “sugar free” or “light” or another buzz words that may indicate artificial sweeteners—don’t try to tell me it’s in my head and that there is no evidence to support that, and that you use Splenda yourself, and that studies show it is safe and so on and so forth. I wasn’t feeling that-but I just clamped my lips once more. I did ask her to show me those studies. She said she would but the next day there was a different dietician who came in her place. I don’t know if that was intentional or not. Either way, I never got them.

Naima in the playroom. She spent most her day here.
There were some people however who were absolutely amazing to talk to and made the stay much more enjoyable (if I can use that word). That was Mrs. Annie, Mrs. Laura (Child Life Specialist), and our case manager Trish. All three of these ladies stood out to me and we each had deep conversations and their words were encouraging to me. Now I don’t know if all of these ladies are married or not, but I’m gonna just call them all “Mrs.” just because, but Mrs. Laura had an understanding of holistic health and the connection between body, mind, and spirit and we talked extensively about it. We also talked about snack ideas and she showed me a children’s book about diabetes and we discussed my concerns about why daycare will be a big hurdle in this new race and she was just a great resource and help. She copied some pages from that book for me that was written to be for the teacher of children with diabetes in school. That helped tremendously in just making me feel prepared to face the world once we stepped outside those four walls. Same with Trish. We sat and talked for probably more than an hour. And she listened so intently and all of my concerns and fears and her words were encouraging. Mrs. Annie just loved Naima. She came in to check on her and she is a type 2 diabetic. We just chatted here and there, but her spirit was nurturing. She was an older lady she talked of her grandkids and she was just so taken with Naima. We clicked almost instantly. I gave all the doctors and nurses whom I liked and interacted with a photo of Naima with a handwritten thank you on the back. They all adored it so. There were a few people who I wanted to get one to but I couldn’t find them and couldn’t remember all their names well, so that didn’t happen.

Naima in the play room with Mrs. Laura. She is practicing giving shots to the doll. Mrs. Laura did a lot of educational activities with Naima to try and help her understand what was going on with her.

Naima blessing her food.
In the hospital they kept asking if anyone in my family had diabetes and I was like for type 1 not that I know of, but yes for type two. After some digging, it came to light that on her father’s side there were some people who did, so it’s likely that is where the gene may have come from. I now worry about his other children and I hope that their other half of genes carry a protective one, however the truth is that they are susceptible to developing it as well. Hopefully God will have other plans for them.

Naima took many rides on her IV cart.
I was not ready to go home Thursday night, but they discharged us. I couldn’t understand why they would release when they still hadn’t figured out a proper carb: insulin ratio for her. I actually got upset with them and kind of lost my cool because for two meals during her stay they had to take all of her carbs away from her meal because she was high. So here is how they did this: they would say its meal time and have me order and meal and within about 45 minutes it would be brought upstairs from the cafeteria. They would then place the food in front of her. Then they would prick her finger to test her glucose and say “oh wait, its high let me go speak with the doctor”. Then they would come back and say “so we have to take all her carbs away but she can order some of XYZ.” The first time I wasn’t happy about it but I let it slide. The second time I was pissed. I mean, usually the carbs they were taking from my baby was her fruit, and once it was the bun from her cheeseburger. My thoughts: why not check her glucose BEFORE she orders her meal and you tell her that she can have something that she is looking forward to having instead of placing it in her face and taking it away. I don’t think anyone would be happy about that…but at least an adult could understand it. A 3yo—not quite. I mean it was hard enough trying to balance a meal with only 45 grams of carbs per meal (which are regulations she is still on at home) and NO carb snacks throughout the day. What that meant is that she had to try and “fill up” on protein (read: meat) so that she wouldn’t be hungry for a snack later. That too is not the best example of healthy eating in the world…but our options were limited. But I did fight for her as much as I could to make sure she got her extra food to make up for what she lacked in not being able to eat carbs. It wasn’t easy though. I was also a prick about making sure that each snack she got wasn’t full of artificial sweeteners. They put it in her file so that all the staff knew she was not to have any. Thursday when they said we’d be going home all the preparedness I thought I had went out the window. So did some of my tact. Her BG was at 403-far from normal or controlled, so I wasn’t happy with them releasing her like that. I snapped at one of the nurses because at dinner time they decided to take her carbs away again. She asked me what I she can have instead I was so irate I just snapped back “I don’t care what you bring, just bring my baby something” and walked away. She avoided me and the room the rest of the night. I felt bad afterwards, but truly they need to make the policy change. I was mad because Naima was crying when they told her she couldn’t have her carbs again and took away her fruit. Why would they put an innocent child through that? Particularly when a solution was so visible:  check BG before ordering the food and telling her she can have something. Still I feel bad for snapping at her-she was just following the doctor’s orders. Her name was Brianne. SORRY BRIANNE!

I don’t want this blog to be a book, so I will end this one here and talk about life at home in another post. I will add though, that Thursday night, two members of the ministerial staff of my church came by the house to pray for Naima. Even though we are dealing with the diagnosis, we are also praying and believing in God that she can and will be healed—in his time, if it's his will. By faith, it is already done.

This is a photo I had took of Naima and I added a little poem. This was pre-diagnosis, but I found comfort in the poem during these days. My mom tacked it on the board that was next to her bed. I left it there--hoping that maybe (if the staff doesn't throw it away) it could be comfort to whomever is the next person to occupy that space. The poem reads: My Wish For You:
Comfort on difficult days. Smiles when sadness intrudes. Rainbows to follow the clouds. Laughter to kiss your lips. Sunsets to warm your heart. Gentle hugs when spirits sag. Friendships to brighten your being. Beauty for your eyes to see. Confidence for when you doubt. Faith so that you can believe. Courage to know yourself. Patience to accept the truth. And love to complete your life.

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