Day 23 - A teaching moment

I am behind on my National Health Blog Post Month again, so here I am playing catch up.

Day 23's prompt was "What's something your doctor taught you or you taught your doctor?"

Kortnie's first Endocrinologist was a Type 1 Diabetic himself, he was older and had a weird sense of humor, he was kind of nonchalant, he actually had a combined practice up here on the mountain.  He was a pediatric Endocrinologist, but there aren't enough patients here for just that, so he also saw other kids in pediatrics.  When we first moved here we tried a few different pediatricians for our kids, he was one of them, we didn't like him so we just moved on to the next guy and finally settled on a family practice close to our home instead of a specific pediatrician for just our kids. 

Enter Diabetes 2 1/2 years later and we were back to this certain doctor, he was the only specialist within 180 miles who could take care of Kortnie's T1D, so we felt he was the only choice for us.  We still didn't like him, and now we liked him even less.  I was relieved when he retired, even though now we have to drive to Phoenix for our appointments.

One time we were there for an appointment and he wanted to look at Kortnie's pump settings.  Her pump is locked so that she can't accidentally push random buttons on the front of it and mess up the pump or accidentally give herself insulin.  It locks much like a cell phone does.  To unlock, you hold down two buttons at the same time.  So, she handed her pump to the doctor, remember when I said he was T1D himself, well he actually used the same pump as Kortnie as well, he did not know how to unlock the pump!  Crazy-ness, you'd think a specialist doctor who had the disease he was treating and used the same pump would know about the lock feature, but no, Kortnie taught him how to unlock it.  Ironic I think.  It would be funny maybe, but since I already wasn't fond of this guy it just turned me off even more. 

We do have a diabetes educator at our hospital, who we love.  She mostly deals with Type 2 Diabetes patients, but she's told us that in the past few years she's had a lot more diagnosis of Type 1 up here on the mountain.  She and the hospital cover a wide area of patients, they people within 100 mile radius around Show Low where the hospital is, people from several different small mountain towns.  Over the summer she has started doing trainings with nurses from the hospital on Diabetes, it's an all day training and she goes over the different types of Diabetes, she invited me to come do a talk during the training about being the mother of a Type 1, and Kortnie comes and they ask her questions too.  The training was so well received that the hospital has decided to hold it twice a year, so I went back in the Fall and did the training again.  I was honored to be asked to come share some of my experiences, answer questions and just put some awareness out there. 

You can read about my talk and the experience at A Chance to Advocate and Educate.  I hope to be invited back to the next training, I admit that first time I went I was nervous, but now that I've gone twice I feel like I have more to add and am more comfortable talking to them. 

It's true what they say about Monday's

My poor Kortnie, I feel so bad for her sometimes.  Ever since she was a little baby she's always been my sickest kid.  Once she was diagnosed with T1D, she actually didn't get quite as sick anymore, we figured it was beacause we finally knew what was wrong with her and we were working hard to treat her and give her a healthy life.  Well, we are coming up on 3 years since diagnosis and while we've dealt with a few colds and one or two stomach bugs, we've not had to deal with anything too awful. 

Saturday morning she had a soccer game, Saturday evening we went to the fair.  Blood sugars were good, we had a fun day, at the fair we ate some junk food, funnel cake, french fries, lemonade, and hot dogs.  I bolused, the BG's stayed good.  From 10:30pm Saturday night to 8am Sunday morning she was kind of high but 230-280.  I figured it was residual from that dang funnel cake and lemonade.  By 10am Sunday she was back at 112, we had breakfast and went to church at noon she was 81 and still had Insulin On Board (IOB), I gave her 3 smarties and sent her to her Sunday School class while I stayed in my class.  We got home from church around 2:30 and she went to the bathroom, then came out and started telling her dad stomach hurt and she went to the bathroom during church and just now at home and there was blood in her pee.  He called me upstairs and told me, she hadn't flushed the toilet so I went and looked.  Not gonna lie, I freaked out.  Jumped on the computer and started googling.  I figured that she probably had a UTI (uterine tract infection), but there was also stuff about Kidney Stones and Kidney Disease and how people with Diabetes have Kidney problems.  So I started asking her questions and figured that yeah, it probably was a UTI.  Next I went into some of the D-Mom and PWD groups on Facebook and posted a question about it.  I got lots of advice and encouragement, here.  I am so grateful for the DOC (Diabetes Online Community)!  I called her Endocrinologist and they said it sounded like a UTI as well, and that I could give her tylenol and push fluids and keep her at home and take her to Urgent Care in the morning or ER that night if she was really in pain.  She did go to the bathroom several times that evening, we monitored ketones and they stayed around the trace-moderate range, her BG's were pretty good too so I wan't too worried, just feeling bad for her that she was in pain.  I have never had a UTI myself, but some of my friends told me that they pretty much suck and are painful.   A friend of mine and a fellow Diabetic brought her an AZO pill that is supposed to help with the pain and also turns the urine kind of bright orange or yellow.  That little pill seemed to help her and get her through the night. 

Monday morning I was supposed to go to the hosptial and give a talk to a group of Nurse's doing a training session and all the different types of diabetes.  I've done this training class before.   I was supposed to be there at 9am, Kortnie had wanted to go with me, but I told her she had to go to school.  Well, plans changed, I was at the Urgent Care with her by 8am, we were still there at 9am and I called the hospital and told them that I was at Urgent Care and was going to be late, they of course were okay with that, my talk is about being the parent of  a T1D, and well, this little trip to the Urgent Care and messing up my plans for the day fits right in with that doesn't it? 

I told the docs at Urgent Care that I prefered the Walmart pharmacy, but they must have written down Walgreen's instead, because they sent our prescription to Walgreens.  Oh well, I can run over there and pick it up, not a huge deal, even though I already had to go to Walmart to pick up test strips and a few other things. 

After we were done at Urgent Care we headed over to the hospital, I gave my talk, the Nurse's asked me some questions.  One of the questions they asked me was "Do you ever get a break?"  I smiled and told them not really.  One of the nurses asked Kortnie "How do you feel about having diabetes?", she thought about it for a minute and then said "it sucks!" but she was smiling when she said it and they all laughed and there was of a chorus, of empathy and "I bet's".

Next we went to Walmart, stopped by the Pharmacy and they were still out of test strips, I had called in the prescription the previous Monday, it had been exactly a week and they were still out.  What's up with that, the pharmacy tech decided to just pull them off the OTC shelf for me.  I'm not sure what the dang difference is between the prescription and OTC strips is.  Well, actually there is no difference in the strips, I'm sure the difference is all in the paperwork and behind the scenes stuff.  They told me to go shop while they got it all ready for me.  So I went and shopped, got the stuff on my list, headed back to the pharmacy to pick up the strips.  We are standing in line and Kork says she feels low, she checks her BG and she's 43!  Yikes.  Good thing I had juice boxes in my cart!  I popped open a box of Capri Sun's and she sucked one down and sat on the bench by the Pharm counter while I waited in line.  Had to laugh, here she is low, while waiting in line to pick up a new batch of test strips.  I mean it's one of those moments where you either laugh or cry.  I got the strips and she said she was feeling okay so we went over and got in line to pay for our other stuff.  Hopped in the car and went across the street to Walgreens for her UTI meds.  She was feeling better and her BG was up to 112, so we stopped at Subway for lunch.  I gave her the first dose of antibiotics and she said it was yucky. 

Then we headed home, she was so tired, I could see it in her face, we got back to town around 12:30, I was going to let her come home and have a nap, but she wanted to go to school.  So, I dropped her off at school.  Let her teacher know about the UTI and she would need to go to the bathroom.  She has access to the bathroom already according to her IEP, but it also says in the IEP that if she's going to the bathroom a lot, she's probably high and needs to check, so I just figured I'd clue her in on the UTI.  Her awesome teacher told Kortnie, "oh those are no fun, I've had them before, I'm sorry you don't feel good, don't worry, if you have to go to the bathroom, just get up and go, even if I'm busy you just go, you are definitly not supposed to try to hold it in okay, I won't collect a stick from you".  Awesome!  (the kids get popsicle sticks at the beginning of the week and then as rewards for various things throughout the week, usually if someone has to use the bathroom she makes them "pay" a stick to go, she doesn't make Kortnie "pay" with a stick though)

I picked her up at 2:30 and she told me she had fun at school and that she only had to go to the bathroom twice, and that she was feeling better.  She went to Soccer practice yesterday afternoon too, even though I wanted her to stay home and rest, but nope, she wanted to go to Soccer and play and have fun with her friends.  This girl, she doesn't let anything keep her down for too long.  She's my Hero.  I look at her and she looks so tired, I know that Diabetes wears her out sometimes, and I know this UTI has her beatdown and probably the combination of Diabetes and UTI is even worse, but she just keeps on keeping on.  I don't even know if she knows what it feels like to feel good, I think she probably feels crappy so much of the time, that feeling crappy is just her version of normal.  I wish I could take all of it away from her, it makes me sad, but I don't want her to see how sad it makes me, because even though she says having diabetes "sucks" she seems okay with it most of the time.  The fact of the matter is that even though I want to take it from her, I can't, so I have to let her be okay with it and not make her think it's such an awful, terrible, sad thing...even though it is!  When she wants to rant and rave and be mad, I'll let her, by golly, but for now, she's okay with it all, so I guess I will be too. 

A chance to Advocate and Educate

A few weeks ago the Diabetes Educator at my local hospital called and asked me to come in and give a talk at a training session she was doing for some of the Nurses. The training session was going to be about the Different Types of Diabetes. The focus was mainly going to be about Type 2 vs Type 1, but she touched on Gestational and LADA as well. Anyways, she asked me to come in and give a 5-10 minute talk about what it's like to be the mother of a Diabetic and a kind of "day in the life" of managing diabetes. She also asked my permission to use a picture of Kortnie. I agreed to both. We live in a Large Community made up of Small Towns. Our local hospital is not very big and usually sends the more intricate cases down to Phoenix which is a 35 minute helicopter flight or 3 1/2 hour ambulance ride. We also do not have a Pediatric Endocrinologist anywhere on the mountain at this time.

So, this was my first opportunity to really be an advocate for my daughter in a professional setting other than school. I had been thinking about what I wanted to say for the 6 weeks prior to my talk and finally the day before I was to go in I sat down and wrote something up. I was so nervous!

Here is what I wrote up.

Good Morning, my name is Amanda, my daughter Kortnie is 8, she's had T1D for 2 1/2 years and has been pumping just over 2 years. Miss J asked me to talk a little about what it's like being a parent of a T1D. First of all, I'll tell you about a typical day for us regarding Diabetes Management.

7:19am-We wake up, her BG is 124, 38 carb breakfast, we weigh and measure all of her food, this day she had cereal and milk, we calculated and dosed her insulin, we call it a bolus
11:32am-She wants to go to a friends house, her BG is 176, 36 carb lunch, we bolus and she goes to play
2:16pm-She's 269, that's high but she's been playing outside and it's hot, we do a correction bolus
6:21pm-We're going swimming , get to the pool and check, she's 421! Wow, that's high, what should we do, make her sit out while the other kids swim? Give her a full correction bolus? Pump on or off? She seems fine, she wasn't showing any indication that she was high, maybe she was just excited that her friends were gonna go swimming with her. My husband and I decide to give her 1/2 the amount of insulin we'd usually give, take her pump off and let her have fun.
7:27pm-We always check her one hour into swimming, she's 77 now, wow, she dropped fast, I gave her 1 glucose tab, left her pump off, swimming will be over at 8
7:55pm-Out of the pool, she's 55, I gave her a juice box and put her pump back on her, go home for showers
8:41pm-Dinner time, we made spaghetti, her BG is 87, that's a good number, gave her 1 cup of spaghetti and 1/4 cup of sauce, we bolus for 55 carbs, I used a Combo Bolus, that's when I give her 65% upfront and let the other 35% "drip in" over the next 4.5 hours
9:37pm-Kortnie says she's feeling low, she's 57, We give her a juice box, but keep the Combo Bolus active
10:34pm-Bedtime for everyone, she's 154 and feeling good, I'm happy with that number
2:32am- I wake up every night around 2:30 and check her, she's 348, Dang! Spaghetti and Juice Boxes have caught up to us. Correction Bolus and back to bed
8:03am-she's 116, Great Wake Up number

We check Kortnie's BG 10times a day, we change her cannula every 3 days at least, every 3 months we make the 3.5 hour drive to Phoenix where she sees a specialist and has an A1C done, once a year we do extensive blood work and an eye dilation.

On sick days we check every 2 hours and monitor ketones. When our kids are sick we try to manage them at home but sometimes it gets away from us and we have to bring them to the ER. I realize that the last thing you want is an overzealous parent acting like we know it all, but we live with this disease every day. We just want what's best for our kids and with Type 1 Diabetes every minute counts when they are sick.

I had a closing type of statement written up but at this point they started talking and asking questions. They said that they do like when a parent knows what they want and are informed that their big issue is getting doctors to listen to them after they've listened to parents. They asked a few questions....some they asked were....How has her diagnosis changed your family? Do you utilize the glycemeic index or just strictly count carbs? They were amazed how much she fluctuates throughout the day and how much the swimming affected her and they asked about other sports. They asked about how much care she does for herself and how I'm doing at teaching her how to take care of herself. They asked about school. They asked about how we handle sweets and we talked about letting kids be kids despite their diseases. They even asked about cooking, like how do I cook and do carb counting. They asked about her pump and she got up there and showed it to them, she was a little ham, which was nice because sometimes she doesn't want to talk about her Diabetes at all.

It was a great experience and I was honored to be asked to come talk and after I left I thought of a million other things I could have talked about. I hope that Miss J asks me to come talk again sometime.

Later on that evening I heard from a friend of mine who works at the hospital (not as a nurse but something else, I think she works with the heart monitoring machines or something), anyways she talked to a nurse who was at the training session and that nurse told her that I did a great job and it was one of the more interesting trainings that she'd been to. Yay! I wish I could've stuck around for the whole day of training but I had kids to take care of, next time I might get a babysitter and sit there all day!

The nurses and I were given a poem at the training as well, I'd like to share it here. It is exactly how I feel, there is no Author or otherwise I'd post the Author's name. Does anyone know who wrote it?

A Mother's Anthem

I am the mother of a diabetic child.

I don't know what it's like to go to sleep at night and know for certain my child will wake up in the morning.

I don't know what it's like to sleep the whole night through without waking up to do blood tests on my sleeping child.

I don't know what it's like to prepare a meal without a calculator, measuring cups, and a gram scale.

I don't know what it's like to drop my child off at school and know she will always be in the charge of someone who knows how to take care of her.

I do know what it's like to force feed sugar in the middle of the night knowing I am sacrificing my child's teeth to save her life.

I do know what it's like to draw up insulin at 2 A.M. and pray to God I'm not too sleepy to make a fatal error in judgment, technique, or calculation.

I do know what it's like to sit underneath the dining room table holding my sobbing child, explaining to her, "No we can't take a break just this one time," while I inject insulin into her already bruised arm.

I do know what it's like to walk away from the pharmacy counter with an armload of supplies and realize I've just gone through another box of 200 syringes.

I do know what it's like to help my child march bravely past the juice and cookies at the school reception that was supposed to be her reward for achieving Student of the Month.

I do know what it's like to look into my child's eyes and tell her she has an incurable disease and explain to her what that means, and then to be comforted by her when I'm the one who can't stop sobbing.

I do know what it's like to love and cherish my child every minute of every day, to know that I may someday donate a kidney to her, and that if she were in need of a heart, mine would be out of the question, because it broke a long time ago.

I am the mother of a diabetic child.