Monday, January 30, 2012

Prescription Chaos

Help me out here because I am going to seriously go find a punching bag if I can't get this whole prescription refill debacle solved...

Alex needs her prescriptions filled:
  • Novolog
  • Lantus
  • Syringes
  • Test Strips
  • Lancets
  • Ketostix
First, I tried to fill them at Walgreens. I needed to transfer all but test strips/lancets from the Phoenix Children's Pharmacy (we filled at the hospital on the way out). I needed to request new scripts for test strips and lancets because we switched to a new brand glucose meter.

Since this is going to be a monthly occurrence, I thought I would make my life easier and set up online accounts to handle it all and swing through the drive through at Walgreens once a month. Boy was I wrong!

I spent like 20 minutes setting up a pharmacy account and entering in all the transfer numbers and so forth. I got my handy little email confirmation from Walgreens saying it would be ready the next day at 10 AM. The next day I didn't hear anything. I ASSumed that they were taking longer because my doctor's office said it could take up to 3 days to fulfill a request for new prescriptions. So I waited 3 days. I called Walgreens. The pharmacist was about as rude as he could be. He said I must have sent my request to mail order and he had nothing on his computer for me. I asked him if he could help me resolve it. He told me to call mail order and dismissed me.

I called Walgreens customer service. The agent was pleasant but reiterated somehow I screwed up. I must have sent it to mail order. I explained I was staring at the screen online showing my order number and the store address of pickup. She called mail order anyway. Lo and behold they had nothing for me too. She called another Walgreens store where I have picked up past prescriptions because maybe I sent it somewhere else. Nope. They had no record of it. She had no record of it. But I was holding a printed receipt with proof I ordered it. And really I didn't care that there was a mistake. I just wanted it fixed and set up so I could do this monthly without it being a hassle. She told me it could take 24 hours to fix my account and she would sent in the request but I should just resubmit the order online and it would go through.

I spent another 20 minutes entering all the information AGAIN. I got my printed receipt. I logged off the site. I re logged on and there was NO ORDER. Now I was ticked. I wasted 4 days on this and they treated me like I was an idiot. Nope, there programmer is an idiot! Did I mention I am in fact a computer tech support and programmer person? I do understand how to use an online form. I have two printed email confirmations showing I did what their stupid system says I did.

At that point I was done with Walgreens. They can kiss my used insulin syringes. I then grabbed my paper scripts and went to CVS. The pharmacy tech started to give me a hard time about not having scripts for the new test strips and lancets as I tried to explain my doctor wanted THEM to fax my request to approve. He then seemed perplexed by my transfer scripts from PCH. At that point I started to cry. All I want to do it get the damn medicine to keep my kid alive, okay??? Can someone please let me pay hundreds of dollars so I can do that? PLEASE? The pharmacist came over. She told the tech she'd take care of it. She was very nice.

So fast forward to this morning when I went to pick up the medication. I arrived and a different tech went to give me one vial of novolog. I explained I need TWO vials - one for home and one for school. It's written that way on their label. He said he can only give me one vial because that is a 30 day supply. If i want 2 vials I have to pay out of pocket for the second one at a cost of $140. I told him this doesn't make sense. I have a 9 year old. She can't carry a vial to school every day. She has to have it every day at school. Medically, she needs two vials and the doctor wrote she needed 2 vials. On THEIR label is says one for school and one for home. He still only gave me one vial.

I called my insurance and they too said I needed to pay out of pocket for a second vial. A 30 day supply covers one vial because she doesn't use more than 33 units per day. I told them that they should make smaller vials then because medically she has to have a vial at school and at home and if they can't make smaller vials then she needs 2 vials. Medically. Period. She told me to call my "benefits coordinator" to change my plan then. I asked who that was. She told me it was the HR rep at my husband's company. Sure lady - I'm going to call my husband's company and tell them to just change their health plan. That will fix everything. Because as soon as they fire him for having his wack wife call to change the company's health coverage because their daughter is costing their company plan a gazillion dollars and raising everyone's rates, that will fix EVERYTHING.

She put me on hold after that. Then she came back and told me I had to pay for the second vial. I told her that my daughter can't be the only kid who ever needed a 2nd vial of insulin for school. So surely there is SOME OTHER option here. She told me to have my doctor call a precertification number to request more insulin needed each month. isn't that what the damn thing on the label already says? But whatever...I called my doctor's office. I left a message telling them to call that number and request more insulin every 30 days.

In the mean time, it's a good thing her insulin doesn't expire for another week. I have one more week to get this resolved before I guess I pay $140 out of pocket for a second bottle of insulin...yeah right after I pay off the $6000 hospital bill and the $700 for diabetes camp I guess. I shouldn't be complaining though too much...there was a time we were uninsured so thank God we have it right now. That's something I suppose. Though if you are a healthy family...make a mental note...check the box for the plan with the best coverage even if it costs you an extra $150 a never know when you won't be healthy...and the cheap plan sucks when you end up in a hospital for an extended stay. 70/30 plans suck for that purpose.

So anyway if you got through all this and you have some experience with any of this, some advice is well needed. If you don't pump (which everyone seems to do) what do you do for school and home for insulin? Help!

Thursday, January 26, 2012

You can't catch diabetes from my daughter...

Today I'm sad. I'm trying to step in someone else's shoes and understand. But, I'm still sad. My daughter lost her "buddy" at school this week. Her teacher had her select a buddy when she came back to school. The buddy walks her to the restroom and to the health room. On average, Alex visits the health room 3 times per day...before lunch, before recess, and before she gets on the bus. She is not allowed to walk alone.

Alex was excited to pick her "BFF" to be her buddy. Things were going swimmingly. She and her BFF even became phone pals and were chatting it up in the evening a few nights. But Alex's buddy came to school a few days ago and told the teacher her parents said she couldn't be Alex's buddy anymore. Her parents said she was missing too much class time. And, she also told Alex she couldn't talk on the phone anymore. Her phone has "issues" and she can't use it.

I don't really get the phone thing. I'm trying to get the buddy thing. Maybe I might have expressed concerns if my daughter was a buddy and leaving the classroom each day a few times a day. Maybe I would have worried about her being in the health room so much and picking up germs. I get that. But I don't get that she was only her buddy for 2 weeks and half that time Alex wasn't in school. So did you really give it a chance mom and dad? Could you have requested the buddy duty be shared between a few kids so it wasn't on your kid every day? I could totally understand that! Could you have seen your daughter being a buddy as a learning experience in itself?

I don't know. Again, a few weeks ago, I might have been them and been concerned about class time, the health room germs and just the responsibility of it. But I'd like to think I would have given it more time than a week. And I don't get the phone thing. Because that makes me question if there is more to the story of not being buddies. I'd like to think not but still...I can't help but wonder.

Friday, January 20, 2012

Sticks and Stones...

Disclaimer: If you are reading this and you see yourself in something I mention that was said or done, PLEASE know that it's okay! I love you for being my friend and I know more about diabetes that I ever knew a few weeks ago and I know nothing about diabetes compared to others out there who have lived with this disease for years. I have said and done things in ignorance many a time. I am not holding a grudge nor am I offended. You don't need to apologize. You don't need to feel like you can't say something to me about diabetes. I hope and pray you won't take offense and be angry with me. I am posting this because it's help me cope. It helps me learn. And maybe it helps you learn something too.

You see there has been a number of times something has been said or done in the past few weeks that eats at me, something said because you don't understand what type 1 diabetes is about. I too never really understood the differences between type 1 and type 2. I have several family members who have type 2 diabetes, most being diagnosed after age 40. Some of them take pills to help control diabetes. Some of them take nothing, but they do watch their weight and exercise. Some of them take insulin shots. I even have a few who have died from this disease. A few have lost a foot or leg. And, I have a few who have been really vigilant with the diet program prescribed to them and no longer have A1C numbers in the diabetic range. This is the diabetes I knew of. I always expected (and I am embarrassed to admit that) that I would be the next diabetic family member. Because I know I could eat better and exercise more.

The thing daughter doesn't have type 2 diabetes. And there are some BIG differences between type 1 and type 2. And it's these differences that are not well know that tend to raise my mom defense alarms when comments are made that hurt my soul. So here you go...just so you you educate yourself...because diabetes tends to get a bad rap in the news. It seems like there are people out there that assume if you are diabetic then you must be fat, lazy, and eat copious amounts of food. And, if you just exercise a little bit more and put down the baked potatoes and bags of candy, you'll no longer have diabetes.  It makes me angry that there are some holier than thou people out there who think it's that simple. Or think that whether you're type 1 or type 2, you are at fault for this disease. And if you just take care of will go away. Well I have news for you...that isn't the case. And it's especially NOT THE CASE for Alex. And's not the case for many type 2 diabetics either...I know a number of them that aren't overweight and do the right things and they still have type 2 diabetes. Sometimes you just get bad luck when it comes to the diabetes gene pool out there. So though I am going to highlight why it offends me in particular for type 1...note that doesn't mean assumptions should be spoken out loud for a type 2 diabetic either.

Type 1 is an Autoimmune disease. It has NOTHING TO DO with whether Alex had a happy meal every week. It has NOTHING TO DO with the fact that Alex was 86 lbs. and in the 90th percentile at her last well check. It has NOTHING TO DO with that fact that Alex ate a bag of swedish fish or loved potato chips. Alex could have been a vegan. She STILL would have type 1 diabetes right now. And she CANNOT get rid of diabetes. She won't get better because I enroll her in a gym. She won't get better because I make her a vegan or feed her only organic locally grown foods. Certainly, it would be bad for her health if I made NO changes to her diet. Certainly, it would be bad for her health if I let her sit on the couch all day and night and fed her french fries. But that would be the case whether she had diabetes or not. The fact of the matter is, she doesn't have diabetes because of our food choices. She doesn't have diabetes because of her exercise regime or lack thereof.

Alex won't have to take less insulin shots or even not be diabetic anymore because we switch her to a sugar free diet. She won't outgrow this disease. Please stop suggesting we just need to provide her healthier food choices and then she'll be "normal" again. It hurts me and I don't need her to think something she did or we did made her get diabetes. Because that isn't the case. Type 1 diabetics have a problem with their immune system. In simple terms, their immune system thinks the cells in the pancreas that make insulin are an infection. The immune system then attacks the cells and kills them off. Alex CANNOT make insulin. A type 2 diabetic can in fact make insulin. A type 2 diabetic's cells have slowed down insulin production over time for a myriad of reasons. But they do in fact make insulin up to a certain point. Their pancreas is NOT under attack as a result of a misfiring immune system. A type 1 diabetic cannot make insulin. There is the difference. A type 2 diabetic can sometimes improve their insulin production in their pancreas with diet and exercise. A type 1 diabetic cannot. Period. End of Sentence. Alex could run 200 miles a day and eat legumes and lettuce. Her pancreas won't make insulin. Alex's blood was tested for the antibodies present that prove she has type 1 diabetes. She in fact has them. She was destined to get this disease. That's just the cards we were given.

And if you see me out in public with my daughter and she is eating an ice cream cone or even a happy meal, don't judge her or me. You see, yes, I have been really hands on in sticking to a well balanced diet that includes all the food groups. Alex herself likes to choose foods low in carbs for her snacks because she simply doesn't want extra insulin shots between meals for her snacks. But since being discharged from the hospital...we have in fact bought her a happy meal 2 times in total. The first time...was the week she came home from the hospital. The second time was last night...after a particularly horrid hour spent in a lab getting a ton of blood work done, 4 large tubes of blood drawn for testing in which she screamed and cried and was plain terrified. I offered the poor girl a happy meal because she bravely let them draw all that blood with her memories fresh from the ICU of the blood draws every 15-30 minutes. Also, the carbs in her happy meal weren't much greater than most of the well rounded meals she has had every day since leaving the hospital. I'm not even going to go into what all the blood work was for because I'm hoping that most of those tests are going to be negative because I don't even want to think that we may be dealing with more than one autoimmune disease here. But for all she's been through, I'm okay with the child having a happy meal once in a while! And no, it isn't the reason she has diabetes.

Friday, January 13, 2012

I am seriously losing it!

So remember that pesky foot? Well, it's really ticking me off at this point. You see, I was ready to write it off as a bruise that Alex just doesn't remember getting. Her awesome doctor called me yesterday mid-morning just to check on her. I explained she was at school and still complaining the foot hurt. But other than that, all was well. No fever. No sore throat or headache or anything else to signify some sort of illness coming on. He told me to keep and eye on it and come back in if it wasn't better over the weekend or got worse.

Fast forward to 3 PM. I picked the kids up from the bus and Alex was limping home. She said her foot hurt worse. She was pretty cranky and blew up at me for telling her we had to go to the ice rink for her brother's lesson. We finally managed to get in the car and she cried most of the way to the ice rink that I wasn't fair. She just wanted to stay home. At the rink, I propped her foot up and used a heating pad on it which she said helped. She looked pale and just not as perky as she has looked since coming home from the hospital. She said her stomach hurt. I checked her blood glucose and it was 160. Then she started crying about an "acid bubble". The last time she cried about those was right before we ended up in the hospital. So I started to get worried. Her foot was red and a little puffy.

We got home and I told her to go pee in a cup to check ketones. I dipped the strip and my mouth went all agape when the thing started turning dark. I matched up the color to "moderate ketones". I then checked her blood which was now 260. Temperature 99.1 Hmmmm...

I called the endocrinologist on call who told me not to worry too much about the ketones because we were giving her the insulin and her numbers weren't bad. He told me to call her pediatrician about her foot. He told me to follow sick day protocol in the binder and that was that.

I called the pediatrician's office. This is where the story gets a little funny because the nurse on call phoned me back and I started rambling on about what was going on and as I began to explain Alex was recently diagnosed with diabetes and blah blah blah the nurse interrupts me.."Terri? This is Wendy." I wasn't sure what she meant at first because I thought Wendy who? And was this not my doctor's office calling me back? It turns out it was Wendy...a mom I just met (virtually) through a local T1 diabetes group. Wendy...the mom with the Candy Hearts blog. It turns out she is an RN and does after hours calls for my pediatrician! You don't know how nice it was to talk to someone who at least knew some background information and I didn't have to start from square one. She let me know I should have Alex seen in the morning and take her into the ER overnight if she got a fever among a few other things.

So we spent the night getting up every 3 hours checking Alex's blood glucose, checking for ketones, and pushing a whole lot of water on her. By morning she had negative ketones and her blood glucose level was around 160. She said her foot felt a little better and only hurt if we pressed on the area that was red the night before. It no longer hurt to walk. The area wasn't red anymore though call me crazy but I can still see the area she is complaining about - it just seems a little puffier to me and the veins stick out some more so than the other foot.

Alex's pediatrician saw her this morning and said he had already called over to have her seen by an orthopedic doctor and get an MRI but since she was saying it was better that we could hold off to see if it kept improving. So here we are in the waiting game again. Alex demanded to go to school after the doctor's visit so I dropped her off and I guess we'll see what the weekend holds! I do hope the weekend holds some more sleep in store for us. I'm exhausted...

Thursday, January 12, 2012

You're never too old to expand your vocabulary!

The first few days we were in the hospital, I felt like people were talking a foreign language to me. The doctor quizzed me the last day on the names of the insulin Alex was on before he gave us discharge papers because up until the second to last day I was still saying the medicine that starts with "N" or "L". It's fairly challenging to learn about diabetes, let alone learn about it in 4 days, know the vocabulary, stick needles in your kid, and perform calculations involving fractions and ratios. Let's not forget you're learning all this on almost not sleep.

The only thing I'll say about math is I guess my math teacher was right when she told me someday I'd use fractions in my life. I now get to use them and ratios every day, several times a day. Win for her.

As far as vocabulary, well there is a lot of diabetes lingo out there and I still feel like a goofball saying some of it and wondering if I'm even using it properly half the time. Maybe if I write them here and bore my friends to tears with them, it will help me remember them better. Words I never knew before December 20th:

Bolus: Dose of insulin delivered when child eats or to lower blood glucose levels in response to a high reading.
You should have see my face when I began to hear this from the nurses...did you give Alex her bolus? When did she bolus? When did she WHAT????

Basal: Continuous insulin delivery that keeps blood glucose level within target range when the child is not eating.
Alex takes Novolog for her bolus and Lantus for her basal. DON'T mix them up! It could cause severe hypoglycemia or even be fatal. Doctors don't like you to use "N" or "L" to distinguish them so learn their names...

Hypoglycemia: A condition of below-normal blood glucose levels, generally 70 mg/dL or lower.
Give Alex 15g of carbs when she has hypoglycemia. Wait 15 minutes. Retest using her meter.

Hyperglycemia: Not to be confused with the above word; a condition of above-normal blood glucose levels, generally 150 mg/dL or higher.
Alex has mostly been in a state of hyperglycemia. I think there is something to use the word hyper here...because she is definitely hyper, moody, and raging when she is high, especially above 250...Give Alex lots of water to drink, correct using a bolus when possible, and test for ketones when above 300.

Ketones: Produced when the body burns fat for energy
This is why Alex lost 18 lbs...and landed her in the ICU...we now test her urine anytime she has a blood glucose over 300.

Glucagon: Injected into a diabetic patient in severe hypoglycemia and unconscious.
Scared out of my mind about the thought of using this thing...Alex has one on her at all times and the school has one in the health room for her. 

Lancets: Little needles inserted into the Blood Glucose Meter to poke your finger with.
Handle these with when you stick yourself changing this thing out!

Sharps Container: That is the scary little container you see in the doctor's office to put used needles in.
Who knew they sold these at stores for home can also use other plastic containers like milk jugs, etc.

Oh, there are a lot more words out there and a lot more I haven't even learned yet. But if I'm getting bored of typing them, you've already stopped reading this blog. I'm sure I'll learn more if and when Alex moves to an insulin pump. I feel like I'm getting a crash course in a medical degree or something here. I should have studied that in college. Apparently, it would have been far more useful than my social studies education degree!

I still don't know all the steps I suppose...

Wednesday, January 11, 2012

It's probably nothing but...

So today hasn't exactly gone as I planned but then again, there haven't been many of those kind of days in the past few weeks either. Um, in fact no day has gone has planned yet since December 20th.

Alex came home from school yesterday complaining her left foot hurt alot. I asked her if she hurt it at school and she said no. I read the note from the nurse noting she had her blood tested 5 times at school. At 11:30 AM she had her blood tested because "friends said she was falling, teacher worried". That's what the note said. Her BGL was 260. No low. In fact, she has run rather high for a few days, going to bed 2 nights ago at 324.

I have always been one to play down my kid's aches and pains. A month ago, I would have told her to get over it and move on. I asked Alex if she was up for karate and she said yes. So I figured it couldn't hurt that bad! Off we went to karate. She fell a lot during class. I caught her hopping on her right foot a lot. Not that she would tell her teacher she wanted to stop because her foot hurt. I wasn't quite sure what to make of it all.

That evening she complained more and more about the foot and was obviously limping  about an hour before bed. I examined her foot more closely and I could see it was red and tender and warm to the touch just above her big toe. She said it hurt to touch it or to walk on it. I thought to myself that I was glad we had a 9AM appointment with her pediatrician in the morning so I could mention it. At bedtime, her BGL was 311, which seemed odd to me based on that fact that she ate at 5:30 PM and it was a fairly lower carb meal. I tested her urine and it showed trace ketones. But I am not supposed to worry about trace, right?

I heard Alex coughing occasionally throughout the night. And just like 3 weeks ago, I had to be up and out of the house at 5 AM for my son's skating practice. I left Alex sleeping at home with her dad and wondered what the day was going to hold for us.

After dropping Ben off at school, I went to pick Alex up for the doctor appointment. She said her foot still hurt but it wasn't red or warm anymore. I could see that it was slightly discolored and perhaps a little tender to the touch. Her BGL this morning was 140 and still some trace ketones showing up. She isn't coughing but she does seem a touch congested. I made her drink lots of water (which would have been way easier to do a month ago when she was drinking gallons of water).

The pediatrician looked at her foot and decided to send her out for an x-ray but he didn't seem overly worried. He did tell me to keep her out of school. So I am trying not to be worried either. So I guess we'll see what the radiologist says! But right now, I'm not caring if I come across as a paranoid freak...better safe than sorry!

Tuesday, January 10, 2012

Doesn't diabetes camp sound like more fun than pony camp?

I just need to vent for a few minutes...

I picked up the mail last night and there was the pretty colorful brochure from Girl Scouts about early registration for summer camp 2012. And I wanted to throw it in the trash but I couldn't.

Last summer Alex went to girl scout camp with her cousin up in Prescott. They had an awesome time together and came home with so many memories. They dreamed of growing up and starting a farm to raise horses. They begged us to sign them up for camp again next summer only this time pick the pony camp where they can take care of a horse all week long every day. We tried to sign them up for that last summer but the camp filled before we registered the girls. So my sister and I vowed to be on top of things this year and sign them up the first day of registration. Alex has talked about going to this camp ever since she came home last June. And I have encouraged it. Maybe now you understand why I want to tear of the f-ing brochure.

You see I went online and read about girl scout camp and their small paragraph on girls with special needs and special diets. And I knew after the first few sentences there was no way I was sending my girl to girl scout camp this year. There is a nurse for the entire camp. She is not necessarily specifically trained in diabetes. The camp counselors are typically college age girls working a summer job and they don't sleep in the cabin with the girls. Case closed. Alex won't go to girl scout camp. Too many things could happen. She isn't even giving herself her own blood tests yet. I can't send her to a camp that has no obvious skill in caring for a newly diagnosed diabetic kid and pray to God she doesn't get a low in the cabin with only 9 other 9 year old girls sleeping there. I can't trust someone won't give her some high carb snack and not realize she needs an insulin shot for it. I can't risk them not realizing she needs a blood test before swimming or any other physical activity which is what camp is all about.

So...I'm grateful for this whole diabetes summer camp that I fully intend to send Alex to in June. You bet I am registering her on day one. It may cost 3 times what girl scout camp costs and I may have to charge it on a credit card but she is going. They do have horses there. It ironically is next to the girl scout camp up in Prescott. I know it will be an awesome experience for her in so many ways.

But I'm still pissed off. Because I want to send my kid to pony camp like I planned to. I want to make good on my promise. But I can't. And I'm sure she'll hate me for that too. Maybe not long term. But I'm sure she'll hate me for it when we have to tell her she isn't going. Yes Alex, won't it be SO MUCH FUN to learn to give yourself a shot instead of riding horses with your cousin?  It will be JUST AWESOME!!!!! I hate myself for it too.

A child's view...

I went into Alex's room after getting her off to school and found her American Doll in the ICU...apparently she has diabetes too.

Monday, January 9, 2012

Let's throw school in the mix...

I have both dreaded and anxiously awaited today. In a twisted kind of way, Alex getting diabetes just as Christmas break began was good timing in the sense that we had 3 weeks to get ourselves past the shock and into a routine before we had to return her to school. I've heard so many stories about schools and diabetics, mostly leaning toward the negative side of things - that there are teachers out there that don't understand diabetes and will refuse to allow a diabetic child to leave the classroom for a bathroom break, water, or because they don't feel well. Diabetic kids often don't feel well. Most of the time from my very feeble limited experience they are right about not feeling well. How would you feel if your blood sugar went from 70 to 300 and back and then some all the time? You'd probably be moody too.

So I spent yesterday obsessing over the items Alex had to bring to school today:
  • Second Blood Glucose Meter
  • Meter Strips
  • Meter Lancets
  • Syringes
  • Ketostix
  • Insulin
  • Glucose Tablets
  • Glucose Gel
  • Glucagon Injection
  • Several 15g carb snacks
  • Substitute low carb/free food snacks
  • Cotton Balls
  • Alcohol Wipes
  • School Health Plan from Physician
  • A form in her lunchbox each day with the total carbs in her lunch
We packed it all up and I went over it and over it. I read about 504 plans and Health Emergency Plans. I talked to someone from the American Diabetes Association last Wednesday about School Safety seminars. And I obsessed some more. You think about a lot of things...
  • What if Alex gets a low on the bus ride? Will the bus driver know? Will anyone notice if she passes out? I had a long talk with her brother. I bought this cool key chain thing that attaches to her backpack and contains glucose tablets for an emergency. I packed juice box and skittles in both kids bags with strict orders to leave them alone and use them if Alex is acting dizzy or  faint or shaky. But will they remember? Will my ADHD son who can't remember what he had for breakfast notice if Alex is passing out? And why should he have to?
  • What if Alex is in PE and her PE teacher is yelling at her to run faster and she is sick. Will he catch that something is off? Or will he refuse to let her sit down and go to the nurse? Will he send a buddy with her so she doesn't pass out by herself down the hallway? Alex already has had negative things to say about this teacher in particular so how am I supposed to feel good about it?
  • What if someone brings cake one day? Will someone give her a shot if she wants a piece? Will kids blame her if someone says they can't bring those snacks anymore (even though that's not true). I've already had some experience with people who don't realize diabetic kids CAN in fact have things with sugar these days...just they have to have a shot and it isn't a great idea to have a lot of sugar every day or by itself...but a donut or a cookie at school once in a while is just fine.
  • What if Alex has a really low or really high blood sugar and has an important test and they make her take it anyway? Kids with really off sugars often do poorly on tests.
I could go on but you get my think of all these things and then you read all these crazy stories out there of things that went badly. My baby could have died in the ICU and now I'm supposed to send her to school with a bag of medication and hope she gets it when she can't give it to herself...

Fortunately for me I think anyway I lucked out in the school department. I went in briefly to talk with the nurse while Alex was still hospitalized and she already had my name down to call when she heard about Alex. She gave me a list of supplies she expected and assured me there were a few other diabetic kids in school she handles daily.

So off we went this morning with our bags of supplies and into the nurse's office where I gripped Alex's hand not ready to let go if I thought for a minute someone wasn't going to look out for her. The nurse was ready for us. She had a form with all my concerns and more. She'd already had talks with Alex's teachers and planned to walk Alex to her bus today and talk to the driver. She'll test Alex's blood 15 minutes before school ends to make sure she isn't low getting on the bus. She'll test Alex before lunch and before recess and before PE. She had a drawer labelled and ready for Alex's items and just her items. Her insulin is locked in the fridge.

She offered to walk Alex to class and do a show and tell about diabetes. Alex agreed...and asked me NOT to go. She is too shy when I'm there. So I impatiently waited in the health room for them to finish. I so wish I could have watched her because I am so proud of her but I get it...I'm mom...she is 9...she's lost so much so I get every little bit of independence means a lot.

The nurse came back and was impressed at how much Alex knew and how well she spoke about it all. Of course...someone brought donuts today for a birthday. So I went to Alex's class to ask her if she in fact wanted one. She did...they are eating them in the afternoon. So, she'll go to the nurse at that time and get a shot. I went home and printed out the carbs for a glazed donut from Dunkin Donuts. Alex asked me to come back at lunch to give her first shot at school.

I was home for about an hour and returned to school ready for the lunch shot. I was glad I did because the nurse room was buzzing with kids. One had a head injury. So Alex didn't have to wait for the nurse to finish with that child who needed immediate attention because I was there. I gave her a shot and her buddy from class watched and they both skipped off to lunch. Alex mentioned she went to the health room a while ago because she felt dizzy. The nurse did a blood check and it read 220. No low there! Alex mentions the nurse does the blood test way better than kidding! So let the nurse give the next shot for the donut, okay? Alex agreed.

So I'm home again waiting for a phone call or waiting for the bus when it pulls up at 3. But I tell you what...sitting in that CRAZY health room full of kids left me nothing but impressed with that nurse. She was attentive and obviously skilled and able to multitask. I could never do her job. I think Alex is going to be okay. I think I am too.

Saturday, January 7, 2012

If this is the honeymoon, I want an annulment...

A little over a week ago, the endocrinologist became hammering home some points about low blood sugars. My eyes glazed over because I was already on information overload. (Giving a diabetic child to an ADD mom is cruel and unusual punishment but that's another blog.) We were still in the mid 200s for most checks. Lows seemed scary and we weren't there so baby steps...

Well a few days ago, Alex got her first "low". It was day 2 in her return to karate class and we went to test her blood before running out the door. 79...put the keys down and grab a cup of pudding. Alex was tickled pink that no shot was required for her favorite 13 gram sugar free pudding. Wait 15 minutes and check again...106...grab the keys and drive to the dojo! I tried to hide my fear and smile and agree with Alex about having her cool free pudding. I calmly (or not so calmly) told her to let me know if she started to feel dizzy or shaky during class. About 15 minutes into class she came up to me and whispered she wasn't sure if she was dizzy. We went to the bathroom and pulled out the meter I love so much. I should have read the directions when we got it...because in my fumbling I must have hit some setting that put it into clock settings. It took us a while to get the thing to return to the blood taking screen. 145.'re just not use to exercise anymore...and back out she went.

The next morning she work up at 106. And her numbers remained in the low 100s most of the day. We went to the mall to buy a medical bracelet (another debacle) and we noticed when we returned to the car that Alex was moody and she slammed the car door because no one "would help me keep it open". I was in a hurry to get my son to his skating lesson. We raced back to the house and picked up my son and a bag of snacks. Alex wanted some pudding. I told her I would grab some and we could test her at the ice rink and give her a shot if needed if she wanted some that bad since she can't have anything over 5 carbs without a shot. I laced my son's skates and sent him to the ice. We tested Alex's pudding for you! Alex exclaimed she loved honeymoons if it meant free treats and no shots. But me? I don't like the roller coaster thus far.

Yesterday was day 3 of the lows. And I was presented with a new scenario that I probably ignored in Alex's last few appointments. She woke up at 71. She said that must be why she felt so shaky and she also was hungry. I had cooked her breakfast and it was sitting there hot and ready to eat. And I had no idea what to do. Did I subtract 15 carbs from the breakfast and give her a shot based on that number? Did I give her a 15 carb snack, wait 15 minutes and then correct? Did I just give her a 15 carb breakfast (no fruit loops for you!). There was nothing in my diabetes binder that said what to do with a low number at a meal. I figured a call to the doctor was in order but they weren't going to call me back in time to make a decision now. So I told her to eat with no shot and we would retest in 15 minutes. 15 minutes later it was 310. Shit! Did I make a bad decision? I corrected for the 310. I tested an hour later and it was 145. At lunch, I tested her and we were at 71 again. I called the doctor and told Alex to eat. While waiting for the doctor to call me back I made a call to a cousin in Maryland who happens to be a type 1 diabetic and has about 38 years experience with this disease. Her suggestion was to half her food correction dose to 2 units from the 4 it would have been. While talking to her my endocrinologist called back (they are fast and I was impressed since this was our first call since leaving the hospital). They also said half it to 2 units and changed her carb ratio and lantus units at night. Good call cousin!

The thing is after we did all that Alex was on a roller coaster all evening and went to bed at 299. Her moods were all over the place. I particularly loved the screaming fit over sending her to her room for saying "damn" when frustrated over some craft she was doing. "You're the meanest mommy in the whole world!"; "I hate you!". It is SO HARD to figure out what is 9 year tween drama and what is blood sugar roller coaster moodiness. But I tested her after she screamed she hated me (boy did she hate me then) and she was 145...on target...okay she really meant that I was mean...

So maybe we shouldn't have backed off the carb ratio and lantus? But...she woke up today at maybe it was a good thing. All I know is if this is a honeymoon, I seriously want an annulment!

Tuesday, January 3, 2012

I am going to go Office Space on that glucose meter...

I am sure it is user error but I am so over this whole glucose meter thing. Give me an insulin shot any day. But I hate this damn blood poking business. I am trying all the tricks. We use a heat pad to warm her fingers if they are cold. We run the fingers under warm water. We have her stand up and hold her hand downward. We "milk" the hand and finger. And at least once if not more times a day I poke her finger and a tiny drop of blood comes out but not enough. If I don't get enough blood the stupid thing throws an error. I can fill the strip up 3/4 and be trying to squeeze out more blood and the thing wants to read the 3/4 of blood and error out. So I've learned not to get blood on the strip until there is enough of a drop. But...sometimes there just isn't more than a small drop of blood coming out. What else am I supposed to do? I am squeezing her finger and warming her hand. Tonight I squeezed so hard she screamed and ran. Damn it all the hell! Can't the thing take a SMALL drop of blood.

My mother says I should try some other meters because she thinks the one we use needs more blood than some of the others. I also have to have the thing dialed on 6 or 7. I have been told others have it on 3 or 4. So I don't know if my daughter just doesn't have a lot of blood she wants to share or I have a crappy meter or she just has a crappy mother and can't use a meter. But it's bad enough to poke her. It sucks more than anything to poke or twice or three times because the first one didn't take.

Like death to a dream

I know my titles are pretty dramatic. But I guess all I can say is this process has been pretty dramatic. Maybe if I'm talking to you in person I wouldn't say things in such a way. But that's why I'm here. Because I can be as dramatic as I feel like being. And learning what diabetes meant for Alex and for all of us to me was like death of a dream. It doesn't mean there won't be new dreams. It doesn't mean things couldn't be worse. But all the same the next few days were filled with lots of tears and coming to terms with what couldn't ever be. I'm happy to say I think I'm moving past that and forward to what COULD be. But I started this blog because for some reason it's important to me to remember all my thoughts and feelings of those early days. I have this swiss cheese memory (thank you ADHD) and if I don't record it, I tend to forget it. Sometimes that's a good thing. But sometimes it's also important to remember...

My first fears on the regular diabetic ward were about telling Alex. I'm just going to say Alex from now on. I suck at saying "A" all the time. So Alex it is. We had been told many times since coming to the ER about the great services the hospital had to educate kids. We also came the week of Christmas. Much of that staff was off or busy with holiday activities. On one hand it was fun to get many visitors and presents being the week of Christmas. On the other hand, I'd have traded the presents and famous visitors for some therapy and education in a heartbeat. The first few times they started doing the blood pokes and shots my reaction was to try to stop them and ask them just to take it from her IV to ease her pain. The nurses reminded me this was something she had to get used to. The IV would be going away. The shots and blood tests would remain a daily part of her life. Oh...

She still didn't know this was a forever thing. She screamed and cried each time they poked her. And it wasn't like I could tell her she would be better soon and not have anymore of those. I was dreading the time when they would start having us give her a shot. How would I ever do that? Finally Child Life Services came to talk to Alex about diabetes. As luck would have it, they were out of the special backpack gift they usually give children which contains a bear, book and other items to help them understand. They gave us a paper to fax to request it be mailed to us. That was great...but we needed help now...

Child Life scrounged up a makeshift bear. They came and read Alex a book about taking diabetes to school. They explained about the pancreas and insulin. They told her there was no cure. Alex covered her head with her blanket and sobbed. She tried to sob quietly but I could hear her. And it broke my heart. She refused to come out from the blanket for some time. She was listening but I knew she was crushed. I was crushed. But I had to try not to start crying too.

The dietitian came to meet with us. She talked about carb counting. She explained that Alex could not have anything with more than 5 carbs without insulin. She explained the carb ratio (20:1) and the insulin factor of 150/75. We learned how to calculate Alex's insulin based on what she was eating and what her blood sugar was. We learned about appropriate low carb snacks and "free foods". I learned that pretty much everything Alex currently eats should probably be modified in some way either in terms of smaller portions; timing with meals; etc. I blamed myself for her dietary choices and still do. She isn't a big vegetable eater. She hates nuts. She pretty much doesn't care for any low carb choices other than bacon, eggs, and a few other high fat/low carb items. I should have worked harder when she was a toddler to open up her taste buds to those things. Instead I was lazy and let her gravitate to high carb items. Now we were all paying a price for it. It didn't cause her to have diabetes as a Type 1. But it wasn't going to make this transition any easier.

The dietitian was super nice. She came back to visit us again the next day, day four of our stay. We still weren't giving shots. She offered for us to give her shots (of saline). I didn't want to give a stranger a shot either but i took her up on the offer. It helped me get a little more used to the idea of it. She gave me a shot. I agreed it was not horribly painful. Just a slight pinch going in.

My husband was the first one to give Alex a shot between the two of us. It went smoothly and he was calm and patient. Alex screamed a lot but we expected it too. A few hours later it would be my turn. I was terrified despite my practice. The nurse didn't help. He was tall and leaned over me closely and seemed anxious. I felt like he didn't want me to do it either. I was shaking quite a bit. I drew up the insulin and he pointed out air bubbles. I had to redraw it. I bent the needle. We had to start over. Finally we were ready to give it to Alex who was screaming. I put the shot in and it slipped out of my hands. I caught it and managed to complete the shot without it causing damage but the damage mentally was done. Alex was screaming she hated me and that I was terrible at it. And that I would never do it again. The nurse offered me no kind words either. I had been awake for most of 3 days. I just felt like I failed at the thing I was most scared of doing. My daughter was screaming she hated me.

I looked at my husband and simply said I had to leave. I drove home in tears, crying loudly the 40 minutes home. I came in the house, flung myself on the chair in the living room by the brightly lit Christmas tree and sobbed like I don't remember sobbing and crying in many years. I don't know how long I laid there but eventually I fell asleep. I woke up around 1 AM and couldn't go back to sleep. I thought about how badly the day before had gone. I thought about my daughter crying when I left the hospital. I had told her I'd be back by morning. I didn't want to give more shots but I knew I had to figure it out. I showered and drove back to the hospital at 3 in the morning.

When I arrived, my husband was awake to my surprise sitting in a chair with his laptop blogging. He was crying too. The night time blood draws and shots had not gone well. My daughter has told me she hates me or that I am mean every so often for things like telling her to clean her room. She has never told her dad that she hated him. Apparently she had said that and more during the nightly blood draws. I thought when I got to the hospital that my husband would have had a good night and I could build on that. Instead it was clear we were both falling apart. It was his time to leave and regroup. It was also clear there was no way we were going home on Christmas Eve. We weren't ready.

Christmas Eve is best described as the crying day. I think I spent 85% of the day in tears as I thought about how I would ever be good at giving Alex shots and blood pokes. I thought about how she couldn't go to sleepovers or have birthday cake at school on a whim. I thought about how she would have to ensure blood pokes to do karate and that she would be spending a good deal of time in the nurse's office each day instead of in class. I thought about the fact that she was going to be on a low carb diet at 9 years of age and that it would be the kind of diet like I have failed at so many times in the past for myself. If I am a failure at choosing appropriate foods, how would I ever be successful with my daughter?

All the while with the help of a patient kind nurse I began to take charge of the shots and blood draws. I wanted to be home on Christmas. I thought about my son who had been abandoned for the week and now would be sleeping at someone else's home Christmas eve night and waking up without presents from Santa. I hated the world. I hated diabetes. Mostly I cried. But...I got better at giving the shots.

When my husband returned in the afternoon, we hugged and resolved that this was the hand we had been dealt and like it or not somehow we had to do this. We got better together. We walked Alex around the hospital that night which was mostly quiet and empty. Most patients outside of very very sick patients had been sent home for Christmas. My daughter was angry and blaming us for staying this night. "It's your fault I have to stay here for Christmas!". She was angry and what could I say to that? We took her to the rooftop garden and sprinkled reindeer food in the potted plants. We took pictures at some Christmas trees displayed in the waiting rooms.

I drove home in the early evening to drive my son to his other grandmother's home for the night. I cried and told him I was sorry and that we would be home on Christmas and open presents. My even-tempered level headed 11 year old boy told me he understood. I assured him that Grandma would have presents for him too in the morning. Then I drove home and prepped the family room in hopes of our discharge Christmas day.

I returned to the hospital around 10:30 and brought with me Santa's plate for cookies and a few presents. We had a decent night's sleep because the doctor's decided Alex did not need a 3 AM blood test and shot. In the morning, she opened her presents and managed a few smiles. When the endocrinologist came, we agreed that if the afternoon blood draw went okay, we could go home. We were still having stress over the blood draws. Sometimes it seems we would poke and not enough blood would be drawn and we would have to repoke. The shots were going as well as they could be going at that point.

Lunch went smoothly and we received discharge papers shortly afterwards. Finally we were going home. We were happy to be leaving, but anxious too. No more nurses to help. No more receipts from the cafeteria showing the exact carb counts. It was going to be all us and only us at home. But it was time and we were past the constant crying and resolved to figure this out.