Monday, February 27, 2012

Putting a price tag on health...

In 2006, we uprooted the family and moved to Tennessee for what was supposed to be a dream job. One small glitch was that this dream job came without health insurance. We didn't think much of that small fact at the time. We were all healthy for the most part. Even my son who has asthma was not needing much in the way of support and we figured we'd just buy our own health insurance and be done with it. My husband took the job and we moved from Arizona to Tennessee.

Alex in 2006
I had no idea what a debacle the individual private health plan application process is. My son and I were denied coverage by our first attempt through Blue Cross. They cited his asthma. They cited my "body build" which was humiliating to say the least. We worked with an agent after that to acquire insurance through a company I'd never heard of (and for good reason as it would come to pass). For the sum of $600 a month we had some health coverage with a few "riders" in place - no coverage for my son for ANY respiratory issue for 2 years and no coverage for ear tubes for my daughter ever (she had ear tube 3 times as an infant/toddler).

I think we had the plan for about 6 months when my daughter started complaining about her ear. We took her to an ENT and eventually they scheduled exploratory surgery because there was something blocking her ear canal. While in post-op, we found out a) she actually had a small pebble in her ear (apparently from the preschool playground) and beyond that they believed she had something called "cholesteatoma". This was a scary sounding thing to us because it involved a "benign" tumor.

Here was the pebble found in her ear. On the left, was her ear tube taken out as well.
I put a dime in the photo to guage the size.
 While sitting in the hospital taking in this news, we received notification from our insurance company that they were in fact cancelling our policy on Alex altogether. They claimed we lied about her health. You see, we marked on the application that she had ear tubes 2 times. I forgot about a third time in the myriads of paperwork. You'd think if I had been trying to cover something up, I would have lied about her having ear tubes at all. The simple truth is I'm a mom and I have ADD and I omitted a date. But they used that to accuse us of fraud and cancelled our policy and refused to cover the surgery Alex just had.

I realized much too late how critical it is to have good health insurance. A dream job means nothing if you have no health care coverage these days.

We applied to buy into the state health insurance plan for children in Tennessee. We made more than the income limit for free coverage. But TN had a great plan to allow for people like us to buy into the plan and they couldn't deny pre-existing conditions. The irony was they won't allow you to do this if you have existing coverage. You have to be without coverage for 3 entire months before applying. Because Alex had coverage from that crappy company, we had to wait 3 months.

I took a photo of all the paperwork we had to deal with during my fight with the insurance company.
I learned to keep copies of everything from that experience.
Unfortunately, ear tumors won't wait 3 months to be addressed. So we ended up in a enormous amount of debt over the whole mess. And we learned that any other job opportunities would have to offer a health plan. Private health insurance is a joke.

Fortunately, Alex's ear tumor was caught very early before it even reached a stage of needing removal by surgical means. We learned she had terrible allergies (all trees/weeds/grasss) and that created inverted pressure in her ears that caused pockets to form. The pockets were not full of hardened materials that form the tumor. So we had to address her allergies and use a variety of methods to reverse the pockets by reversing the pressure in her ears. She started getting allergy shots and we did everything we were told and she was free of the mess within about 6 months. And, we had state insurance for the kids for about $500 a month.

A few months after Alex was diagnosed with the ear problems, Memphis was besieged by a series of tornadoes. I remember taking cover in the closet in our house wondering why we were crazy enough to move from Arizona to this stormy place.

Crazy tornado night - 2/08
And then we found out my husband's employer was hit by the tornado. They lost everything as the facility took a direct hit.

Destruction of the company - notice the overturned semi-truck - one of several!
And a few days later, the place caught fire while crews were trying to shore up what remained of the building.

Adding insult to injury...
The company was grossly under insured. While they tried to recover, inevitably, they went under and my husband was about to be unemployed. Fortunately, he is very intelligent and highly skilled in what he does and every employer he has gone to work for has fallen in love with him so he quickly was able to get another job. and it came with health insurance. Even though it was a good job, we also began to question our long term goals. We wanted to go home to Arizona. We missed our family and I missed the desert. But we knew we couldn't be without health coverage so when Joe found a job here in Arizona, it had to have health coverage.

We came home to Arizona in September 2010 and Joe found a job here with health insurance. I'm grateful for it. But I have also learned that a 70/30 plan can be crushing even still when your child is in the hospital for 6 days, and 2 of those days are in the PICU. The, factor in doctor visits every week with $50 copays, prescriptions with $40 copays, and lab fees and so on and so on. In fact I just got yet another bill for $950 to cover the doctor visits during the hospital stay. That's separate from the hospital stay itself which I won't even type the amount here.

The stress of diabetes itself is crushing. The stress of facing hospital and other medical bills is like hitting someone when they are down and out. We'll get it worked out but what hurts more is it will be at the cost of buckling down pretty hard for a while on any expenses that aren't necessary.

The worst part so far for me has been talking to my son this week and letting him know he needed to take a break from figure skating. We simply can't afford the hundreds of dollars in lessons, ice time, classes, etc. while taking on this medical debt. He has been ignored so much more than normal in the past 8 weeks while we have worked to get Alex well. And now, I have to take away ice skating, something he does 5 days a week and I am sure helps him get his mind off the stress at home.

Ben's spiral
But there is no choice right now. I'm hopeful though because without the expense of skating and the expenses of some other items we cut, we should be okay because we had that 70/30 plan. I shudder to think what might have been if Alex had been diagnosed a few years ago.

Friday, February 24, 2012

I don't want to belong here!

My mind is full of thoughts but they are scattered, confused and I'm just tired. Some days it just feels like I'm being pounded with rocks. Some days I want to throw them back. Some days I want to duck and run for cover. Some days I just don't care if I get pounded away at by them indefinitely. And then I feel overwhelming guilt for having any feelings whatsoever that would warrant attention or pity. I mean, I'm not the one with diabetes. This isn't supposed to be about me.

We went to an event to learn about diabetes camp last week. They advertised gluten free pizza and drinks free with the event. Even so, I just didn't want to partake in it. I'd have to calculate carbs and draw insulin and give Alex a shot in front of a crowd. And you would think it's a diabetes event so who cares? But I look around and my own insecurities are that someone is going to watch us and what if Alex screams alot and/or bleeds or what if I screw it up somehow. So, we ate ahead of time which in and of itself was a nice time as my parent's offered to cook us dinner at their place which was near the event location. But I feel overwhelming guilt at this choice because again, I've made it so that I am not allowing her to be and do like most everyone else there and just eat some damn pizza. And if I can't handle that at a diabetes event, what kind of loser am I?

So we get to the event and make our way to a table marked by age groups at camp. Everyone is eating pizza. Alex is already pouting about wanting pizza too. I've left her insulin in the car in a cooler because I really didn't want to deal with it and she just ate dinner anyway. I look around and see a myriad of parents pushing mysterious numbers into insulin pump screens while there kids munch away. And even at a diabetes event I feel different because I don't even understand that whole pump thing. And I can't even get Alex to agree to try a insulin pen so how the hell am I ever going to get to a point where we might try a pump. And truthfully, while intelligently I know those pumps will make life so much easier and food events a little less overwhelming, I'm scared to death of having to learn something knew because I already feel like I'm on diabetes brain overload. I guess that's why they don't let new people get pumps immediately. But even here I just don't feel like I'm ready to belong here. Or maybe the better way to put it is I don't want to belong here.

But I have to smile and pretend I'm just fine because that's what I do and I'll just put on a good face for Alex and my mom and my son who's tagged along. Alex is immediately bored sitting at the table watching the kids eat pizza around her and before I even realize it, her brother has grabbed 2 slices of pizza and is eating at the table. And I want to throttle him for doing it because now Alex is really ticked off. And I'm the big loser who doesn't want to deal with it all.

My mom offers to take Alex to the playroom set up for kids while they do the camp presentation. So they go there and I'm left to bite my tongue so as not to make my son feel bad for being an almost 12 year old who just wants some pizza. It's not his fault I am a wimp. He's had to sacrifice a lot in the past 8 weeks.

I don't have much to say about the presentation. It was great. I am excited and hope Alex gets to go to camp. I know it will be good for her and good for all of us. I am so happy they have something like this available and she is old enough to go. My mom returns to retrieve Ben and take him to the playroom. She makes sure to tell him and the counselors that he does not have diabetes - don't poke him with a blood glucose meter in there! Alex is having a blast in there getting her face painted and running around with kids just like her...except they have that pump which she wants nothing to do with.

After the presentation I walk around the tables set up with displays. At one of them, the representative (a mom with a diabetic son) asks me how long my daughter has been diagnosed. I told her Christmas. She asks how I am doing. I want to cry and that lump comes up in my throat. I push it back and say we're just taking it day by day. I want to get out of here. I don't want to belong here.

It sounds completely insane but I keep thinking Alex doesn't have diabetes like the rest of these kids. She just has it a little bit, right? People tell me scary stories of lows. We haven't had that ...yet. She isn't like all these kids I keep meeting. They have these pumps. They all test themselves. Some little kid who couldn't have been more than 5 years old practically stabbed himself with his little poker in that playroom and didn't bat an eye as he guided his blood to his test strip. I've got this kid I have to chase around the house or play a verbal game with her while she delays and stalls getting her blood tested. Many kids we meet so far have had diabetes since they probably can remember (I can't believe how many kids out there are getting diagnosed as babies and toddlers - that's crazy!) I don't think that's better by any means. There is no better in any of this. I should be grateful I had 9 happy carefree years with her without all this diabetes crap. But in some ways I feel like I'm mourning the death of what was so easy just 2 months ago.  I could grab a bag of snacks to take in the car on the way to one event or another. I could tell her to buy her lunch at school or throw anything together in her lunch sack for school. If we wanted to stop at a restaurant and eat, we just did it. If she asked for more fish crackers, I just gave them to her. If she got a damn piece of Valentine's candy, she just ate it. If she wanted to go outside and play with a friend, she just went. I'm not ready for this but here it is. Alex is angry all the time about how much diabetes has altered her everyday life. I'm angry all the time. I have to be ready for all of this. I can't expect Alex to accept this if I can't.  But the simple truth is I don't want to belong here.

Friday, February 17, 2012

I'm not crazy...

Okay well maybe that is stretching it but at any rate, I feel a little less crazy today.

Today we had a follow up appointment with the pediatrician. I have no idea which follow up this one is because we've had a "follow up" every week since the first of the year in the hopes that we'll stop having follow ups because Alex will stop having ear infections, sinus infections, joint pain, muscle aches, fatigue and so on. I think she is on round 4 or 5 of antibiotics. I've lost count now.

The pediatrician has run lots of blood work and the only thing up until today that came back out of the normal range was her A1C and lymphocytes. But today we found out that Alex indeed tested positive for a recent infection of EBV/mono. We hadn't tested for it before and the current monospot came up negative so they ran the full EBV panel and based on the antibody numbers, she most likely had mono about 4 weeks ago. This blood test was run last Thursday and she was starting to feel better and for the last week (fingers crossed), she has almost seemed...gulp...normal. And, her blood sugars have been more often in target range than not. That's a completely new thing.

I'm not happy she had mono but I'm happy we have a label for her looking and feeling sick for most of the time since she was discharged from the hospital. I was beginning to wonder if we were mentally damaging her or something and making her feel sick or something. Or, perhaps she was so stressed out she was getting aches and pains because of stress and anxiety. But now I think and hope we can chalk it up to the kid having mono. I'm not crazy...she really was sick and it really was something beyond diabetes. Let's hope she is on the mend and not going to pick up yet another something out there.

And...for the first time...we have no scheduled follow up at the pediatrician's office. That's a $25 copay a week I'd like to save from spending for a while!

Monday, February 13, 2012

Bright Spots

I've posted quite a bit of negative and dramatic pieces of our new journey. Today I'm posting some positive happy things...
  1. Alex started doing HER OWN blood tests! This is huge for her and for us! Yesterday, we were driving to her Girl Scout cookie booth sale and she was going to eat lunch in the car on the way because we were pressed for time. I handed her the meter and told her to set it up and think about doing it herself. Lo and behold after about 10 minutes she said, "I did it mom!". And sure enough, there was blood. Who knew there would be a day I would be happy to see my child's blood? Anyway, she has been doing her own tests (except in the middle of the night) and with success each time. She is so proud of herself. We are proud of her too.
  2. Alex had her 6-week check up on Friday. Her A1C at diagnosis was 12%. On Friday it was 9.1%. It needs to go down some more but the fact that we are headed in the right direction and in 6 weeks time, makes all of us feel like we are doing a decent job managing diabetes.
  3. Alex managed to sleep through last night's blood test in the middle of the night. She always asks us to wake her first and we comply with that because it's her body after all. She usually sits up and we do the test and possible correction shot and back to bed she goes. I so wish she would just sleep through it like most kids I hear about do after a while. Well, last night I tried and tried to wake her and she was completely asleep and rolled over when I tried. I tested her and she barely acknowledged I was there. She was on target and back to bed I went.
  4. I managed to make a homemade Asian dish Friday night and was very challenged on how to figure the carbs! But after much calculation, I did it and even better she liked it! That was my other fear - making this new dish and then giving her a shot and her not liking it or wanting to eat it all. It went well and the kids asked me to make it again soon. I've steered away from making anything not easily pre-portioned or with more than a few ingredients. It takes me so much more time right now as I learn to calculate and portion it out. But I'm getting there...
  5. We went to a restaurant last night to celebrate Alex's grandmother's birthday. We did her test and shot without anyone obviously noticing us. We calculate carbs in her meal by pre-printing the nutrition guide from the web site. We successfully asked the waiter to measure out her milk for us and bring a to go box to put half her meal in the box when the meal arrive since if she had eaten the entire kid's meal at the table, it would have been about 120 carbs! She didn't want it all anyway ;-)
Anyway, it's the little things that we cling to and take with us and try to remember when we're all feeling frustrated and beaten down over the d-word...

Tuesday, February 7, 2012

A Day In The Life

I thought it might be educational to my family, friends, etc. to hear how our typical day goes here in the King household now that T1 has entered our world...

5:15 AM (or as soon as I am awake)
I go into Alex's room and literally make sure she is breathing. I know the odds are with me that she is but I can't help but worry every day that I didn't catch something and she'll be very low or God forbid not breathing. I wonder if this feeling will ever go away but it hasn't at all since we came home from PCH. As long as she looks good and responds to me I let her sleep longer. If she looks clammy or doesn't act normal, I immediately poke her finger and check her blood glucose level. Her target is 150. A "normal" range for Alex is anywhere from 80 - 150. If it's under 80, she is "low". If it's over 150, she is "high". 6 weeks into this, she is usually higher than target in the morning, somewhere between 160-170 when she isn't sick.

Alex's Blood Glucose Meter
The poker with the needle is the device on the left.
Fill one of the little half black circles on the strip with her blood each time.

6:30 AM
I go back into Alex's room and let her get up and get dressed and I run to the kitchen to ready her breakfast, blood meter and insulin shot.I pull out breakfast - usually eggs, bacon, vitamins and 1 cup of milk which must now be measured (no eyeballing the cup anymore). This meal equals 20 carbs which then equals .5 unit of insulin to eat. Her carb ratio is 40:1. So 20/40 = .5 and that is how we determine how much insulin she needs to eat this meal. Her vitamins are factored in - those gummyvites are 8 carbs for 4 of them. I write down all her breakfast items in a spiral notebook dated with today's date at the top. I write on her blood glucose level (BGL) log sheet today's date, the meal she is about to eat, the time she is eating. Alex is dressed and comes out to wash her hands. I then poke her finger. If she is in a good mood, she'll ready the meter. The only thing she won't do is poke herself. She always reminds me to count to! Blood is flowing and Alex has said "owwww". We squeeze and put the blood on the meter. The meter gives us her BGL. Her target is 150. Let's say this morning for example she was 216. Now I use the ISF (Insulin Sensitivity Factor) to determine how to correct here high BGL. Her ISF is 150/75. So...216-150 = 66. Then...66/75 = .88. Am I done yet? Alex wants to eat! Her eggs are getting cold. Nope...Now I must add again - add .88 to the .5 for the food and get 1.38. That means she'll get 1.5 units of insulin in her shot.

Myriads of log sheets and her food journal. Logs are faxed to the
endocrinologist once per week for review. We've had lots of changes since diagnosis because
so far her BGLs have been all over the place!

I go grab the insulin out of the fridge. I wipe the top of the cap with alcohol. I draw 1.5 units out with a syringe. I make sure there aren't air bubbles.  I have told Alex at this point to start eating. I go over to her as she eats and give her the shot either in the arm or the leg. I wipe her arm with alcohol. I push in the in insulin and count to dispose the needles in a empty plastic gallon milk container now under our kitchen sink. It's almost full just a month after her diagnosis.

A milk jug ironically dated for Christmas...the day she came home from the hospital.
We found this jug of sour milk in the fridge (having been wasted while we were at PCH with Alex),
 washed it out and have been using it to dispose of her used shots and needles since 12/25. It's almost full now on 2/7/12.
 Alex eats her breakfast. I then proceed to pack her school lunch. Hot Dog (no bun); ketchup; peaches; pretzels; sugar free pudding; reduced sugar juice pouch. I list all items on a piece of paper with today's date. I note the total carbs at the bottom...43 carbs. 43/40 = 1.075 units of insulin. I include the paper in her lunch bag to take to the school nurse who will test her at lunch and administered insulin the same way we did at breakfast.

7:20 AMAlex takes the bus to school. If she is low, I test her blood one more time before she heads on the bus. She has a key chain with glucose tabs and a gel tube in her backpack. She wears her Medical ID bracelet and her brother keeps one eye on her (we hope) while on the bus ride.

10:20 AM
Alex heads to the health room. The nurse will test her blood and administer a shot for her lunch and also correct her BGL if it is still high. Alex then takes her lunch to the lunchroom to eat. After lunch she returns to the health room to show that she has finished her lunch. If she chooses not to finish something, she must have something else with equivalent carbs. Because she received a shot for a certain amount of carbs she MUST eat that amount of carbs or she could get a low BGL reading.

1:15 PM
Alex heads to the health room for a blood test. It's almost time for recess. Alex must have a blood test before any physical activity. If she is under 90, the nurse will give her a low carb snack. If she's under 80, she can't go to recess. She must eat a snack in the health room and wait there 15 minutes. Then she'll be tested again. If she is still low, she'll have another snack and I'll get a phone call from the school. If she is low a third time, most likely she'll come home from school. We've had her have lows at recess about 5 times in the the 4 weeks back to school. So far she has never had to come home. We've had her had to be walked to the health room shaking and pale and obviously effected by a low only once so far but just that once was scary enough to me. She was mad she had to miss all of recess with her friends.

2:45 PM
Alex heads the health room for the last time. The nurse will check her BGL before putting her on the bus home. If it's under 90, she'll give her a low carb snack. If it's under 80, I'll get a phone call to pick her up as opposed to putting her on a bus. So far she has had a 90 but never a real "low".

3:45 PM
If it's a karate day like today, Alex will have a blood test and a 15g carb snack. As long as she is not too low, she will head to karate for her 50 minute class.  I make sure we carry a small insulated back EVERYWHERE we go...that bag contains:
  • Blood Glucose Meter, lancets, strips
  • Several 15g snacks to treat lows
  • Glucose tabs and gel to treat severe lows
  • Glucagon - an injection of glucose for an unconscious diabetic to treat the worst kind of low
  • Syringes
  • Alcohol Wipes
  • Cotton Balls
  • Insulin in a fridge pack
  • A few free foods under 5g - in case she is hungry but not low or if someone offers snacks that are over 5g and she doesn't want a shot - she can eat one of her own snacks as a substitute
  • Carb Counting Book which lists carbs for all foods and many restaurant items

Alex's Diabetes Bag - full of everything she needs whenever we leave the house.
5:15 PM
I fix dinner in the same manner as breakfast. I must measure all items and write it in her meal log book. I then test her blood and perform the math needed to come up with the amount of insulin needed based on her BGL and the carbs in her dinner. One...Two...Three...POKE. Alex has her insulin and now she can eat her dinner.

8:15 PM
We are getting ready for the most dreaded of all insulin shots...Lantus, the long acting insulin she gets once per day. She hates this shot because she says it stings going in and there is more of it than the short acting insulin she gets the rest of the time. We must have this shot ready at 8:30 every evening. I get it out at 8:15 and draw it in the syringe and let it warm up a bit because that helps. Alex lays on my bed and usually she runs aways at the last minute. Joe or I have to call her back a few times. Then we have to convince her to give us one of her legs. On a good day she'll just whimper. On a bad day she'll scream and cry and tell us we are hurting her and to stop and she doesn't care if she gets sick or dies. Just leave her alone.

The dreaded Lantus and one of her syringes.

8:30 PM
With the lantus on board, we return to the kitchen to do one more blood test. If her number is above 180, she'll get yet another shot to correct the high number. If it's below 90, she'll get a 15g snack. She prays it's a low number every time. Most days it's high and she needs yet another shot a few minutes after the Lantus with the shot acting insulin. If this is the case, she'll go to her bed and hide under the covers. I'll come in with the shot in hand, a bottle of water, and a cotton ball. I'll convince her to give me an arm or a leg and give her this final shot. Then I'll rub her back and wipe her tears and tell her good night. I'll tell her I'll see her around 12:30 - 1 AM.

I'll leave and put everything away and finish writing out her log book. Then I'll lay out her meter for the middle of the night check. If she is under 150 at 8:30, I'll be sure to poke her at 12:30 - 1 AM to make sure she isn't too low. If she was over 220, I'll also poke her so I can give her a correction in the middle of the night to bring down the high number. I promise her I'd wake her before poking her. She doesn't like to be awakened by the needle stick. She'd rather I wake her first.

1 AM
I'll go check on her. If her number was between 150-220, I'll go just check on her and feel her forehead and most times she pops up since she's a light sleeper. I kind of gauge her and determine if I should poke her or come back at 5 AM. The middle of the night testing is the most turmoil for me - the endocrinologist says it isn't only required if she is sick. Otherwise, it's at our discretion to check and how often. I have yet to meet a parent who doesn't check every night. People tell me stories of diabetics who passed away in the night because of a low blood sugar. I find stories online and see real people and real kids who have died. I find it isn't as uncommon as you would think. So I check...even if I'm super tired and don't want to deal with her screaming. If she was under her target of 150, I poke her for sure. I've only had a few times that I have found her under 90 and in those cases I go find some sips of juice or like 5g of fruit gummies and have her eat them half asleep. I have yet to find her with a real true low. In fact the lowest number we have had this far is 65. I fear that day because I have yet to meet anyone who hasn't encountered it. If she is over 200, I give her get another correction shot. This has only happened when she has been sick (which has been most of the time since she left the hospital). I am betting they are changing her ratios and such when we go to her 6 week follow up this Friday because she is still running high more than average.

And this is a normal day in our life. If Alex is sick and running high or having lots of lows in a row, there are more shots, more blood tests, urine tests to check ketone levels, and more interaction with the doctor's office on what action to take.

It doesn't end. It isn't just about watching what you eat. It isn't about eating sugar free. It is about being your child's pancreas in a strange way. It doesn't do the work. So we must do the work for her pancreas until a cure is found for this disease.

Friday, February 3, 2012

So Sick of Being Sick

Alex just can't catch a break. I feel like the chronic whiner but I am just so sick of her being sick! She has not attended a full week of school since the beginning of December. She has visited a doctor's office at least once per week since being discharged from the hospital 5 weeks ago. Enough already!

Is this normal or what? Because I'm ready to withdraw the kid from school and enroll her in online school. She might get more done. But I'd probably lose my mind too. Selfishly, that little break school gives me is well needed.

Alex came home from the hospital and within the week had an ear and sinus infection. We have had like 2 days off between complaints of something or another since that time...first her foot hurt - big toe and ankle joints. Then she couldn't raise her arm because it hurt under her arm. The pediatrician ordered a ton of blood work. Everything came up in the normal range except her A1C (11.6%) and her lymphocytes were 48% and the normal range went up to 45%. She had no signs of juvenile arthritis which was what we were wondering about thankfully. 3 days after all that blood work she complained of ear pain and sure enough she had another ear infection. She was given another antibiotic. She said her ear felt better but she has complained of feeling itchy off and on this past week and she just looks pale. She finished the medicine Wednesday morning and by Wednesday evening she was hoarse and complaining her throat was sore.

We have the spent the last 3 days with her complaining her throat hurts more and more. She has no tonsils  and it's hard to see anything back there.Besides, she's been on an antibiotic so how could she have strep? Finally today I dragged her back to the pediatrician. He said she still seemed to be fighting a sinus infection and there is some fluid still in her ear. So now we are home with yet another round of antibiotics.

The thing is it sucks when you're sick as it is. But this whole diabetes thing really screws with dealing with your normal sick stuff. The night before last I was getting up every couple hours poking her with the blood glucose meter and feeding her fruit chews. We woke up feeling like a bus hit us. Then the next night I'm correcting her for being up in the high 200s. This morning she woke up at 254 and small ketones. I'm beat. I feel like as soon as I figure out how to manage something, I learn that I can't manage anything. I have always been the confident mom when it came to dealing with illness. Now I'm freaked at everything and panicking that I'll miss something...and she'll end up in DKA again. Because even though everyone keeps telling me it's not my fault I can't help but feel like it is my fault. I should have taken her in before she ended up needing the ICU. I think back to the ICU and I want to throw up and go hyperventilate somewhere.

I just want her to be healthy again. I want her to be in school for a full week. I want to not be getting up every few hours and not really sleeping in between at night because I'm scared to death I'll miss something and find her dead. Every time I think I can relax just a little and have a new normal filled with blood tests and shots and the like...she is sick. And it's more than just shots and blood tests. And isn't like 6-8 blood tests and 5-6 shots a day enough to handle? I think so. So please...whatever these illness germs are...please please go away for good. At least for a few months. Cut us all some slack here. Whatever this is supposed to be teaching me, I'm obviously too stupid and too tired to learn it.

Thursday, February 2, 2012

Random Thoughts and Updates

Okay so I managed to finally get prescriptions straightened out thanks to an on the ball doctor's office and no thanks to my insurance company or the pharmacy for that matter. My endocrinologist rewrote the insulin prescription to allow for 2 vials needed per month. I can't pick up the second vial until after Feb 11th thanks to picking one up early this week though. Thankfully my vial in the fridge is good until 2/15. At least we seem to have what is needed though.

Blood Glucose MetersSo we seem to finally be past the days of struggling with getting Alex's blood for testing. I attribute this to more experience but also a new meter. We left the hospital with two OneTouch Mini Meters. There is lots of good feedback out there about this meter but I can't say I am in agreement with it. I was urged by someone close to try a meter they have familiarity with - the Freestyle Lite. I went online and did comparisons. The OneTouch takes 1.0 units of blood to read. The Freestyle Lite takes 0.3 units to read. That was enough comparison for me. We tried out the Freestyle and I was impressed that we no longer had to keep squeezing and milking poor Alex's fingers to get enough blood on the stupid strip. In fact it takes so little blood I was skeptical. I compared readings because we had enough blood...they were almost identical. On top of that they have this Promise program. Instead of paying $40 per month which is my standard copay I only have to pay $10 a month thanks to signing up for free as a Promise member. Finally, I downloaded their free software and I'm starting to use it to log all of the numbers and since I love computers, this is a good thing! Win all around for finding something that works 5 weeks into this...

Summer Camp
Registration opened yesterday and I signed Alex up and put down our $50 deposit. I think she will have an awesome time! She met an 11 year old that was diagnosed in September through friends at her brother's ice skating rink. They seemed to hit it off and they are both planning to go to the camp. I'm hoping everything goes smoothly with getting confirmed for camp. Alex wants to help out in paying for camp. We've started making these Pom Pom Monster friends and selling them for $5 each - she is keeping $2.50 and putting $2.50 in a jar to pay for camp. I think it empowers her to do something about her diabetes. I am sure this is only the beginning of that. I'm sure we'll be doing the normal walk things and volunteering and donating to the larger foundations. But for now, paying for camp is the priority. This child needs to go!

IllnessHow many illnesses can one kid get in the span of 6 weeks? Alex got diabetes. Then she got an ear and sinus infection. Then she complained of joint pain first in her foot and then under her arms. Then she got another really bad ear infection. Now she is home *again* - congested, swollen throat and the usual cold stuff. She literally finished her antibiotic yesterday morning and was sick by dinner time. She hasn't attended a full week of school since before Christmas. She's always been the kid who rarely missed school. She is sick of being sick. I'm sick of her being sick. We are single handedly keeping her pediatrician in business! They ran a ton of blood work 2 weeks ago. Most everything came back in the normal range with the exception of her A1C (11.6%) and lymphocytes at 48% (normal range stops at 45%). The pediatrician didn't seem concerned since that number can be effected by infections and she has been sick almost non-stop. So I don't know why she continues to look pale, get sick constantly, and complain of muscle aches periodically. But enough already!

Next week she has a follow up on her ear with the pediatrician on Thursday and her 6 week follow up with the endocrinologist - I can't believe we've gone through 6 weeks since she was's flown makes me sad though when I sift through photos of Alex before this all happened. I don't know why other than I think about that was when she was healthy and life wasn't filled with insulin shots, blood tests, and carb counting on a daily basis.