Thursday, March 31, 2011


Red, burning eyes. Foggy brain. Triple cups of coffee. My own (increased) 7 day average is now showing a 158. (I can **usually** hang around a 120 average) UGH. ICK. -Sigh- Weeks of tweaking Maddison's overnight basal rates are definitely showing in my own numbers now, on top of making me look and feel like a train wreck. Last night I finally saw progress, even though I didnt check Maddison's sugars as much as I should have...

9:53pm (going to bed) her BS= 239 Gave correction of .4 per pump. Set my alarm for 2 hours later, but I didnt LEAP out of bed until an hour later! ACK!

1am BS= 95 (THANK GOD) Sip some juice just in case

3am BS= 119 (WOW, WOW. HOORAY!) I cant remember (sleep deprivation is very dangerous) but I think I remember giving Maddison some more juice to sip because I wasnt sure she would stay safe without going low from recent drastic basal dose changes....

5am, my alarm was set and I never got up!!! (exactly what happens when I get this tired)

6am BS= 185

Not too bad. AWESOME progress compared to days/weeks past! This morning was a whole new worry. Starting today Maddison's morning basal doses are now increased to amounts NEVER SEEN BEFORE!!! Its very stressful to make these kinds of changes!! You just dont know what to expect, and of course today just happened to be a PE day. UGH. How do you see the **REAL** basal change result on a PE day!!?? Truth is, you dont. You wait another day. This is exactly how one high day turns into 3, then a week, then 2 weeks....suddenly a month later you are still chasing numbers. Hence the name of the blog my friends!

Looking over my log I can see where the school day went wrong...

At 9am Maddison went to the Nurse for a tummy ache. BS= 224. (DAMN, need to pre-bolus!!) Maddison was given TUMS and the school nurse bolused 5c (as she thought she should do because Maddison has been running high) which dosed Maddison .4units by pump. ACK. SHEESH! SHIT! GEEZ!!! **I** being Momma pancreas, would have known better than to give insulin for TUMS during all these changes Im making. Not only have I been adjusting Maddison's basal rates, but also her breakfast ratio. Which meant TODAY was also day 1 of the new ratio!!! (not to mention this time of day she should have gotten a 1:17 ratio (for post breakfast)instead of her breakfast ratio of 1:12 which was given!!! A ratio change WITH basal changes = a double whammy and even more of a reason NOT to dose 5c for TUMS!!!!!

Poor school Nurse. I love her to death, she thought she was just doing her part trying to fight off these highs....but she just didnt know what Momma Pancreas knows. They just never will I guess -Sigh-

That one little .4 bolused for the TUMS caused Maddison to drop to 46 shortly after. Damn it. Luckily, just 12c popped Maddie up to a nice 92 and the rest of today Maddie's numbers have been perfect. (until bedtime's 89 with .1 active which now leaves me sleepless and waiting)

Finally after 3 weeks of morning highs I just had to tell myself that it was OK to up those morning basal rates to where I never have before!! The fear of causing lows at school for Maddison means I'm probably overly cautious when adjusting basals. Tomorrow (without insulin for TUMS!) Im confident I will see basal rates are much better tuned for Maddie. Of course, its Friday though.....Maddison always runs lower on Friday!! (no joke) So.....we wait till Saturday to see how numbers go.....Ummmmm....NO!!! Weekends are different than school days!! Soooooo......we wait until MONDAY to see some TRUE basal change results!! (By then Maddie's insulin needs are likely to be changing again anyway!)

For all my friends and family that dont live this crazy life.....

THIS is what its REALLY like to be the parent of a child with Diabetes. Thank GOD for insulin pump technology and the ability to micro-manage this crazy disease, but HOLY SHIT is it ALOT OF NEVER ENDING BRAIN POWER in the modern day!! (YAWN)

Tuesday, March 29, 2011


Adjusting. Logging. Watching. Waiting. We aren't getting anywhere. Checking. Correcting. Checking again. 12am. 2am. 4am. At 6am my day begins, even though I'm not sure where yesterday ends. Its easy to fall into the motions of the day, but its hard to stay focused. Its hard to think clearly.

Its a struggle to not feel defeated in times like these, or incapable when all you see are highs. Its hard to care about anything besides getting through the day. Waiting for the next number, so you can try....try...and try again. Deciding what needs to be done next. Waiting for that next number. Trying to get anywhere....only to see that you are getting nowhere. What a fucked up disease this is.

Wednesday, March 23, 2011

What happens after

During any illness Maddison tends to run low. Whether it be a "simple" cold, an ear infection or Strep throat, Maddison runs low when her little body is fighting off illness. AFTER the illness is what gets us. Every time.

Its been nearly 3 weeks since a bad cold/flu ran through our house, and I have yet to find sanity with Maddison's numbers. After the illness Maddison runs high. Gradually. Maybe a weirdo number here and there. Then BAM. She aint comin' out of the 250's.

Basal requirements go UP, and stay UP. Never to go back to where they were. Its as though more and more of Maddie's last lingering Beta Cells are killed off, leaving her daily insulin requirements higher than ever before. Its strange. It makes sense too I guess. It makes me oddly sad in a weird way.

3 weeks after the illness and Im still fighting to defeat Maddie's highs. Thats a long time. After the first week you start to visibly SEE the highs. The dark circles. First hers, then my own. The empty water bottles. The log book that looks like a I'm studying to be a Rocket Scientist. The irritability. Hers and mine. But Damn it, numbers have to settle down soon right?

Monday was back to school after Spring break, and, Maddison was pretty high
200-250's all day. So, I increased her basals in a few places for the early morning hours. The next day showed not a number over 150 all day. But, she still ran high all night. The day after that? She ran high all day. The next day? 3 lows before the school day was over. I cant make changes based on just one day of lows right? So, I changed nothing and waited to see what tomorrow would hold. HIGHS.

And THIS is what happens AFTER the illness. Just a day in the life of a Momma Pancreas I guess. -Sigh-

Sunday, March 13, 2011

Isn't it Time?

Why hasn't someone (perhaps JDRF?) pushed to have Awareness Posters with T1 warning signs placed in Pediatricians offices? A simple symptoms poster placed on the wall within each exam room could save so much suffering for many children in those weeks and days before diagnosis. These posters could surely even save lives.......

Isn't it time?

Saturday, March 12, 2011

FWD to Raise Awareness/Silent Epidemic

Did you know it has gotten to the point that now there is a new term, SOJD? (Sudden Onset Juvenile Diabetes) I hear this SOJD is being labeled a "Silent Epidemic" and my heart just wants to scream......

Since the day Maddison was diagnosed, when I see a story about misdiagnosed Diabetes, or the tragic death of a child/person that has been living with this disease, I have to forward it. I have to. I copy it, paste it, and then send it to everyone in my email address book asking them to do the same. For the simple reason of raising awareness. I have to. Something compels me to. Something always tells me THIS could be the story I forward that may save another child's life. Perhaps I can help a worried mother identify her child's symptoms early...or at least help people understand the seriousness and cause of the disease....

So the other day I forwarded this tragic story through my email list....

A Journey Through Grief
Losing a Child to Sudden Onset Juvenile Diabetes

The sole purpose for writing this article is to hopefully spare every other parent from going through the needless trauma that our family has suffered from the sheer lack of education about Juvenile Diabetes. The medical community readily admits that first time presentations of patients suffering from Sudden Onset Juvenile Diabetes (SOJD) is commonly in a hospital ER setting to be followed up by a stay in ICU. In our case, it was the Pediatric ICU at Huntsville Hospital.

If you don't have a family history of diabetes, the last thing that you, as a parent, might consider to be a childhood malady would be (SOJD), also known as Type 1 Diabetes. For 6 years, our daughter had been the picture of health. She had the normal childhood illnesses ear infections, sinus infections, stomach viruses and such nothing out of the ordinary. So, as an experienced and I thought, educated, parent of 4 children, when our daughter, the next to the youngest child in our family, started exhibiting symptoms that very closely mimicked stomach flu, an illness that our 8 year old child had a couple months earlier, it was no wonder that I didn't consider the notion that this illness was anything else. Unfortunately, it was something very sinister and deadly.

The last week of January, Mary Kathryn, our daughter, had started acting the best description would be, droopy. She just didn't seem herself, but aside from drinking more liquids, nothing seemed too out of the ordinary. After all, she was just in kindergarten a lot of other kids that I know come home from school and seem tired. Preferring to lay on the couch instead of going outside to play then too, it is January who wants to go play outside in the cold anyway? So, I didn't think too much about it.

The next day the school nurse called to say that Mary Kathryn had come to her office because her tummy was hurting. The nurse checked her temperature, which was fine. I asked her if she thought I should come and get my daughter and she didn't seem to think that was necessary. I told her about Mary Kathryn drinking more fluids and the nurse asked if we had had her blood glucose levels checked and I said no. And I asked if higher fluid intake could relate to a viral type infection and the nurse said yes. I spoke to Mary Kathryn's teacher and asked her to keep an extra close watch on Mary Kathryn and call me if she thought I needed to come and get her. The next contact that I received from her teacher was that Mary Kathryn seemed fine and to be feeling better.

On Wednesday of that week, Mary Kathryn got up feeling more sick and complained about her tummy hurting. Fearing that she had contracted a stomach virus from school, I kept her home that day. For the most part, she would rest on the couch. She ate some jello and fruit, apple and grapes, her favorites and she was drinking a lot, but she wasn't running a fever so I kept waiting for the inevitable trips to the bathroom to help her with and got the Lysol disinfectant ready.

Thursday was a repeat of Wednesday. She never vomited, but she kept complaining that her tummy didn't feel well. When I got up on Friday I thought, surely she's coming around the corner today with this sickness, but when she wasn't any better, I reminded myself that my 8 year old was sick on the couch for 5 days with the stomach flu before he finally got better, so I assumed she was going to be the same way. But on Saturday, she was so weak that I sat and held her most of the day. I gave her anything she asked for Popsicles, Coke, apples, Jello, water all in hopes that any of it would help her to start feeling better, amidst all this, almost constant trips to the bathroom. By late in the afternoon, I had gotten scared that something else was going on. She was just so incredibly weak, I knew that I had to get her to the hospital.

I arrived at Guntersville Hospital ER at around 6:30 p.m. We didn't have to wait long to be seen by the triage nurses. They asked what was going on with Mary Kathryn and I told them that she was complaining about her tummy bothering her, but she was so weak and her breathing was labored. I also told them that she had started drinking more fluids and going to the bathroom a lot. They exchanged knowing looks and ordered a blood glucose test. When the results came back, they showed that Mary Kathryn had SOJD, Type 1 Diabetes. I was shocked we didn't have a family history of diabetes. The doctor told me that didn't matter. Having a family history of diabetes only increases the risk to other family members it doesn't guarantee that if you don't have a history of diabetes that that means you're home free and can't get diabetes.

Because of the immediate medical needs of my daughter, she was transferred to Huntsville Hospital's Pediatric ICU. We arrived at that hospital by 10:30 p.m. I had to wait for an hour while the nurses and doctor got her situated in her room. By the time the doctor was ready to speak to me, my husband had also arrived at the hospital. The doctor explained that what was going on with Mary Kathryn at the moment was called Diabetic Ketoacidosis (DKA). Because Mary Kathryn's pancreas had shut down, her body had no way of making insulin, which is what the body needs in order to metabolize sugar in the body so that it can be used to fuel the cells. The only way to flush out excess glucose in the body is for fluid to bind with the glucose so that it can be flushed from the body. Which is why Mary Kathryn's thirst had increased and also why she needed to use the bathroom more. Another side effect from DKA is that the patient can't drink enough fluid that the body needs to help flush the glucose out of their system so the body also starts robbing fluids from fat tissues, muscle tissues and even the organs of the body. As it turned out, Mary Kathryn was extremely dehydrated because of her condition.

I stayed by her bed in the ICU as every intervention, on Mary Kathryn's behalf was made by the doctors and nurses. I would hold her hand and talk to her. Every time her big brown eyes would open, I would stand up next to her and tell her that I loved her. She'd ask, "When can I go home, mommy?" and I'd say "soon". The last time she opened her eyes, I stood up next to her and whispered in her ear, "Mary Kathryn, I love you" and she said, "I love you too, mommy". Those were the last words she ever spoke. She would later become unresponsive, she went into a coma, and later we found out that because she was so dehydrated and during the process of hydrating her, plus trying to stabilize her blood glucose levels, her brain swelled and herniated causing brain death. From the time I found out that my daughter was a diabetic, until the time that she died, was a period of less than 18 hours. And the medical community readily admits that first time presentations of patients suffering from Sudden Onset Juvenile Diabetes (SOJD) is commonly in a hospital ER setting to be followed up by a stay in ICU. Most patients live, but there are others, like my daughter that do not.

You might ask, "Do you blame yourself?" My honest answer would be "yes". I've tried to blame myself every way imaginable. After all, I'm a pretty educated parent, right? But, here's the sad truth, I can't even take the morbid pleasure in kicking myself because I'm an idiot, because some doctors have missed it in their patients and some of them have missed it in their own children. Well, okay I concede that I'm not as smart as a Medical Doctor, but it's my fault I should have gotten her to the hospital earlier. I am at fault there, right? You might think so, until I found out that patients have shown up at hospitals in worse shape than my daughter and with higher blood glucose levels than she did and they lived. So, I'm left with no one to blame except for the lack of information out there and the silent epidemic that no one wants to talk about.

And this is the response I got from my Aunt after she received my email....

"Thank you Kelly,
When I was growing up we never heard of juvenile diabetes and I wonder if it has something to do with our diet, junk food and soda pop. This story about Mary Kathryn is so sad and could have been prevented with a blood test. A blood test should be required for all children when they have a physical just as they do with us adults. Mary Kathryn was such a beautiful little girl and didn't look like anything that serious could be wrong with her. What a tragedy for her parents to go through."


This is wrong in SO many ways. I wanted to spit fire, yet at the same time I understand why people are so in the dark about T1 Diabetes. Sometimes it is better left to not say anything to these kinds of comments...but being that she had watched her T1 brother (my Dad) suffer from every complication of Diabetes over the past 2 decades I figured I should stand up for him, instead of allowing blame to be placed on his "diet" for causing his Diabetes....

It was really hard to be nice. What I wanted to say initially was ^*%(&%&*%&% *^(*^!#!#!#!$^%$&^%$ and ^%@^%!^#!@ and $#$#@%#@!@..... but I didnt. I'm here to educate, not let my emotions get in the way. You really can't be offended by ignorance, and that is what this really comes down to, lack of education. So many times I find myself in awe over the comments....the comments that people say. But, I believe if you do your part, one email or Facebook post at a time, we can make a difference. A difference for that one. Save one life....

Maybe a FWD is all ya gotta do to get through.....

Thursday, March 10, 2011

4 Calls and the Sickie Ickies

After making 4 calls to check and see if my Medical Records were sent to this Surgeon Specialist for Consultation, I finally got a YES. Records were just sent yesterday, two weeks after they should have been. -Sigh-

Still waiting. Still wondering how this surgery is gonna happen when I have two kids to drive to and from school. Even more complicated is a husband who works 14 hour days and can't take time off. Maddison's agility classes, Hannah's Volleyball Practice and tournaments. Our days are packed full, and I don't have the time to be down for a week or more. Then there is the stress of what this will all cost in the end, how many months will it take us to pay off these new medical bills?

The kids have been home with the Sickie Ickies, like everyone else out there I hear. Throats on fire. No strep though, weird how that happens. Cough, headaches, muscle aches. The whole thing. Maddison's blood sugar runs low at night when she is sick, and high during the day. WEIRD. As of yesterday the ickies finally caught up to me, this really IS a throat on fire! I thought the kids were just dramatic. I've got the fever, headache. And low blood sugar to top it all off. When I'm sick I run low. I hate that.

So, 4 calls and the sickie ickies has me worn down when we are supposed to be outside enjoying the 80's weather! Next week is Spring break and we better all be feeling better!!