Honeymoon schmoneymoon

IMG_1094When Caleb was diagnosed, we were told he would have to wait at least six months for an insulin pump.  We were told insurance would not cover it until we could show that injections weren’t working. I have since heard that some doctors will not prescribe a pump until a year after diagnosis because they prefer their patients not start until the honeymoon is over.

The good news is, Caleb did not have to wait to start pumping.  He had his first Pod on about 3 months after diagnosis.  The not so good news is that the first year and a half of pumping was a struggle.  Well, diabetes is always a challenge.  We still struggle. But for that first year and a half, stress and confusion were abundant.

I attribute this to a few factors:

(1) achieving tight control of a diabetic’s blood sugar is plain and simply hard and I was new at it,

(2) there is little in life that I haven’t been able to conquer that I really wanted to and for a long time I believed I could achieve consistently good BGs simply by putting in time and effort,

(3) using only fast acting insulin is a very different and more sensitive therapy than one with a longer acting insulin which seems to soak up  some of the “extra” variables, and

(4) we were managing insulin dosing with an erratic, fickle pancreas that produced some level of insulin without rhyme or reason and without notice, aka: the honeymoon.

Caleb’s honeymoon and its subsequent deterioration has never been medically tested. However, over time, I saw gradual changes in two areas.  His overall dosing would creep up and plateau and creep up and plateau.  Each time it flattened out, I would say, “Okay, the honeymoon is over”, only to be proven wrong and go through it all over again.  The other thing that changed was the reaction Caleb’s BG had to various foods. Every once in a while a food that never before posed any issue would cause erratic blood sugar readings. When first diagnosed, there were no problem foods at all.  Even pasta and pizza were just like everything else.  Pasta was the first to cause problems.  Then gradually pizza and chinese food joined the mix.  I would get the dosing down for them, only for it to change.  Then anything processed or fried started to wreak havoc.  Chicken fingers and fries became cursed foods.  Later ice cream and others.

Nights were by far the hardest with which to deal.  Between the hours of 8PM and midnight, Caleb’s insulin dosing was anyone’s guess.  We would go through periods of dinners of protein and veggies for weeks in order to figure out his basal pattern, to no avail.  His insulin needs would go up, up, up then down, down down. Up and down; high and low.  I had different spreadsheets for his basals, his carbs, his BGs.  I tracked his corrections and treatments.  I mapped his dosing and BGs by hour for any “challenging” food every time he ate it.  I even had a legend detailing various foods and their dosing “exceptions”.  I am a finance person.  I am accustomed to trends and analyses.  If I analyzed this long enough, and in enough detail, I would solve this puzzle. Or so I thought.

Then, when I thought it could not get any worse or more erratic, the bottom fell out.  Over just a few months, his basal TDD went from three units to six and then eight.  The breakfasts of oatmeal or Costco bagels that had been such friendly alternatives were now added to “the list” of foods.  All the rules had changed and things had to be relearned.  It was like going through diagnosis or pump start all over again.

Initially, each time Caleb took what I call another “step” out of the honeymoon, I would feel sad.  I would think his pancreas had completely failed and I mourned for it.  Of course, I was always wrong, and it would take another, albeit smaller, gasp for life and peter on.  We went through this so many times, that by the time it did go completely kaput, nearly two years after diagnosis, I was relieved.  With so many variables to manage when caring for someone living with diabetes, I was happy that the unpredictabilities a schizophrenic pancreas pose were no longer among them.

So perhaps, for some, it is wise to wait a year after diagnosis before pumping.  However, despite the grief I believe it posed for us, I am still pleased with our decision to start pumping quickly and would do it all over again.

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D Tweeps to the rescue!

On the way to the game
On the way to the game

This is a shout out to my friends on Twitter.

Yesterday, we went to an MLB game. MLB stadium means stadium food. Stadium food means unknown carbs and usually not the best food which typically means out of range BGs and stress and anxiety.

Yesterday was different.  We got to the stadium at lunch time and decided to eat. Caleb ordered up a hotdog and the kid’s special came with Kozy Shack pudding – I could handle that.  We’ve done hot dogs often enough and I did a Calorie King search on my phone for the pudding: up to 44 carbs.  Then Caleb’s brother asked for a pretzel – one of the enormous, soft, stadium pretzels.  We got a couple to share.  Okay I could do this.  I did a Google search and a Calorie King search and the results were mixed.  I saw anything from 45 to 101 carbs.  Hmmm.  How do I decide?

Normally in this circumstance I begin to tense.  I am typically surrounded by three children with various questions and needs and all vocalizing them simultaneously.  Any adults present, although aware of the extra work D takes, do not truly appreciate the implications that eating unknown carbs of unusual foods have.  I am alone with this responsibility.  I need to think and think quickly while trying to meet the various other needs of, “I’m hot”, “When will the game start?” “Can I have ketchup with that?”  “Did you see the train pass by?” “Look there’s Jeter!”  You get the picture.

Well yesterday I had a different approach.  I tweeted, “How many carbs in a stadium pretzel?”  Here are some of the responses I received within minutes:IMG_0665

The results were similar to what I had already found from my own searches.  The difference was that I did not feel isolated.  I had people surrounding me who understood.  People who wanted to help.  People who validated what a was considering.  I literally felt like they were there beside me, whispering in my ear, giving me advice and support to make this decision.  I was not alone.

So I took the information and made a decision with the help of my Tweeps, bolused Caleb and we all ate.  I was not stressed and tensed.  I did not feel this big weight on my shoulders wondering if I had made the right decision.  I had input from others.  We did this together.

Yankee Stadium July 18, 2009
Yankee Stadium July 18, 2009

The good news is, Caleb’s BGs were great.  This was the first time an outing was not a disaster of lows or highs or both.  There was no gray cloud of D casting its shadow on our fun.  Although I think part of that is attributable to the alignment of the planets, I know it also had to do with me being able to make good carb decisions.  Caleb felt good, I felt good.  It was indeed a victory.

So thank you Tweeps for being there with me yesterday.  You helped make the day more enjoyable.

Oh and A-Rod hit a homer, Jeter made a great play to first and Mo did what Mo does best and the Yankees had a victory too.  It was a great outing all around!

Jump Start the Pump Start

One of those times the magic works!
One of those times the magic works!

We heard how great pumping would be.  There would be so much flexibility.  He would get his childhood back.  It would be much easier.  We would be able to tailor his basal for every hour.  Dosing could be as little as .05 units – so very specific.  Life would be grand!

Caleb was diagnosed in January 2007.  With everything everyone was saying, I couldn’t get him pumping fast enough.  I learned what we needed to do and did it.  We were carb counting from the day he was diagnosed – check.  I became proficient in adjusting his doses on injections – check.  We obtained insurance coverage – check.  I read Pumping Insulin from cover to cover – check.  I read the manual, got the training – check.

Caleb’s injection therapy had him eating 3 meals and 3 snacks a day of precisely the same amount of carbs at exactly the same time every day.  It was not easy.  Giving him 3/4 of a bagel for breakfast – that was depressing.  A low carb dinner allowed for a higher carb dessert, otherwise sugar free jello.  And oh how I disliked those pre-bed snacks.  I was just not a fan of eating right before going to bed.  I didn’t like finding carbs to eat – it messed up our routine.

I was ready for the miracle that everyone was describing.  We were now entering the land of eat what you want when you want. No more schedules, no more smoke and mirrors to make 50 carbs at each and every meal seem like exactly what he wanted.  Life was going to almost be like it was.  That’s what everyone was telling us.

Well, not exactly.

The rude awakening came the very first night of pumping, April 24, 2007.  Caleb’s BGs were good all day.  I was nervous because he hadn’t had his NPH that morning, but he was cruising.

Me and three kids in the house – hubby away on business.  I slept little, if at all.  We put Caleb’s first Pod on his tush.  I reminded him all day to be careful when he went to the bathroom – pull his pants over the Pod carefully.  Then that night, I myself forgot.  He woke up having to go and I helped him and ripped that Pod right off pulling his pants up or down – I don’t remember.  I just remember I had to do my first Pod change in the middle of the night.  That was not fun.

Worse than that however, were the 300s all night that would not correct.  300s???  Other than the trip to Universal Studios and the first couple of weeks post-diagnosis, we had not seen a 300.  Egad!  Correct, correct, correct.  All night.  He came down finally by morning, but I was a wreck. What happened to the miracle of pumping? The precise tailored dosing?

We did see immediately that there indeed was flexibility in what he ate.  There was no longer the 50 carb limit.  We cheered and skipped through the “beep-beep” of bolusing him for whatever amount of carbs he was eating.  We also saw right away that he did not have to eat his meals squarely on the hour.  If he was playing outside, we didn’t have to rush in for dinner.  And, yahoo! – the snacks were no longer necessary.  Would you like a snack?  Sure, no problem – “beep beep”.  But it wasn’t required.  No more panic at school for him to eat at precisely 10AM even if he was in Music. Woo hoo!  No more waiting for highs to come down with the NPH.  If he had a high (with the exception of our late night fun) we did another “beep beep” and he corrected nicely.

But I thought this little pumping machine that could deliver insulin in .05 increments – so much more specific than the .25 units we were eyeballing with syringes – would result in near perfect BGs all the time.  Wasn’t that what everyone was saying?!?!?!?!

No.  It’s what I heard, but it’s not what they were saying.

They said there would be flexibility – check.

They said he would get his childhood back – well, for the most part, check.

They said it would be much easier – check.

They said we could refine his dosing – check.

Everything we were told was true. However, with no experience and thus no perspective, those statements are subject to interpretation.  I of course now have that perspective and find myself saying all the same things, however, I know there is more to it.  I know that pumping takes commitment.  I know that you can achieve tighter control, but with tighter control comes more risks of lows, so diligence is required.  I know that pumping is indeed a wonderful improvement to Caleb’s life, but it is not perfect.

I find this dichotomy hard to handle sometimes.  I want to celebrate the advances we have today that make things so much easier, but it gives outsiders the impression that this is no big deal.  There was a report on NBC Nightly News with Brian Williams last night which gave me the same feeling.  It spoke about how much easier and manageable diabetes is today.  It is.  But it’s still very difficult and draining and stressful and restrictive at times.  Yes, it’s better and advancements have been wonderful.  But don’t forget about us world.  We still need improvements because it is far from perfect.

You decide

Caleb with his first Pod.
Caleb with his first Pod.

Deciding to pump was not hard.  Even deciding which pump was not hard.  What came after was a surprising challenge.

Six weeks after diagnosis, Caleb had his first endo appointment.  We covered many bases at this meeting, including insulin pumps.

I labor over the smallest decisions.  There is little that I take lightly.  I research, ponder, marinate, research a little more, think, inquire and finally decide.  When I decide, I am confident and committed.  By that point, I know what I want.

Pumping for Caleb was no different.

The nurse pulled out pump options and explained their advantages:

Animas: it allows for the smallest basal rate which is particularly important for children

Cozmore: it, in her opinion, had the best software

MiniMed: it has an integrated CGM

I sat with Caleb and my husband.  I listened to her describe the devices.  I waited for her to finish and asked, “what about the OmniPod“.

The nurse responded, “Caleb can’t use that.  He’s much too small.  It’s too big for his body.”

Perhaps what was said was not quite as surprising as the way it was said.  She implied that we were fools to consider it and further, we really had no clue what we were talking about. We were asked, “where did you hear about it”, as if it was important to know the source of our supposed misinformation.  We were “pooh-poohed”.

If you know me, you know that I am not afraid to speak my mind.  I am not afraid to go against the grain.  I am stubborn and outspoken.

If you know me, your eyebrows likely raised when you read the nurse’s response and you may have chuckled thinking something along the lines of, “this nurse has no idea who she is dealing with.”

A civil discussion ensued.  I explained that it was not too big.  That I knew of a child who was two when he began using it with success (Caleb was then four).  I had spoken to that child’s mother.  I explained that although I agreed the portion adhered to the body is bigger, the overall device that was effectively attached to the body was smaller.  She really tried to talk us out of it.  But her basis was invalid based upon what we knew.  We did not come to our conclusion without careful thought.  We could be wrong, but we wanted to at least give this a try.

With a smirk, she conceded.  I envisioned, “you’ll see”, going through her mind.

Shortly thereafter, Caleb began pumping with the OmniPod.  We dealt with various people at the endo office as he got started.  Everyone’s reaction included surprise that someone of Caleb’s age would use the OmniPod.  Nevertheless, they supported it.

Caleb has been pumping with the OmniPod for over two years.  We have never had any issues with the size of the Pod.  At the time, there was no one else at his endo’s office under the age of twelve using it.  For several of Caleb’s endo visits after he started pumping, the tables were turned.  We were being asked more questions than we were asking.  They could see that the OmniPod was a viable option for children Caleb’s age, and they wanted to learn from our experiences so they could advise other patients.

I believe Caleb’s endo felt they were providing reasonable guidance.  Because the OmniPod was relatively new at the time, there was not a lot to draw upon and I believe they simply made some assumptions about its use.  I am appreciative that they were willing to support our choice, even when they did not agree with it.

This experience solidified my understanding that I am my son’s greatest advocate.  Even including doctors and nurses with the best intentions, only I truly have his best interests in mind.

I will continue to research, which includes consultation with Caleb’s doctors.  However, I will continue to make decisions that I, and soon, that both Caleb and I have concluded are the best for him, either because of or despite his doctor’s advice.

To pump or not to pump

First day with the OmniPod - April 24, 2007
First day with the OmniPod - April 24, 2007

From the very beginning, when Caleb was in the hospital at diagnosis, there was talk of pumping. “Oh it will be so much easier when he’s pumping.” “Oh he’ll be able to be more of a kid when he’s pumping.” “Pumping will provide so much more freedom.”

Well why on earth are we giving him shots?

The thought of pumping at first to me was a little horrifying. I didn’t understand how it worked and my imagination formed images that I didn’t like. I envisioned a permanent “something” surgically implanted in him. It seemed very sad. Very medical. Very dependent. No one showed us what it entailed. We just heard how great it was.

I’m not sure when exactly I got over those self-formed images (which of course were all wrong), but I knew Caleb would start pumping ASAP. All I needed to hear was that it was the best way to get control, would result in the best BGs and therefore give him the brightest outlook. The rest didn’t matter. My early reading included the results of the DCCT study. Enough said. Sign us up. When do we start?

Even so, I still had reservations. In those early days I watched Caleb running around, being a three-year-old and tried to envision this device strapped to him. It seemed like the increased freedom came at the price of the loss of other freedoms. We were just picking the lesser of two evils. Sigh.

Bless our dear friends, Dan and Meri. Dan’s company was investing in this new product by Insulet Corporation – had we heard of the OmniPod? Why no. Could this be? Is there actually an insulin pump that you don’t have to be strapped to? This must be a mistake – something new and not yet approved. Why has no one else mentioned this to us????

I cannot express how fortunate we were at the timing of things. Dan’s query came at exactly the point when I was looking at the various pump options. Had he mentioned it a week later, we may have made another choice.

I did my research and I was sold. We were decided. We were going to give the OmniPod a try. Now how do we get it? And WHEN??

I was told, “Oh the insurance won’t just pay for it. Needles are cheap. Pumps are not. You will have to wait at least six months and show that you can’t control his BG on injections.” That was not appealing. I wanted to do whatever I could to keep his BGs in control. I almost felt like we were better off not keeping his BGs in range.

And that doesn’t even touch upon the fact that many insurance companies were not yet hip to the OmniPod in early 2007. Our insurance listed it as a CGMS and thus would not cover it. I was prepared for a battle. I had my ducks all lined up.

That was all misinformation however. As soon as we could, within 3 months of Caleb’s diagnosis, we submitted to our insurance our request for a pump. We were told it would likely be rejected and we would have to appeal. We didn’t. I got the call one day. “Caleb is 100% covered.” I’m sorry, can you repeat that? “This is Insulet Corporation and I’m calling to tell you that Caleb has been approved for the OmniPod, 100%.”

I was elated. It was the best news I had heard in months.

To pump or not to pump. It is a very personal decision and requires careful thought. It is not for everyone. But for Caleb we chose to pump. We are very glad that we did.

The days “after”

Injecting Caleb with insulin within days of diagnosis.
Injecting Caleb with insulin within days of diagnosis.

I think I have always been considered by others as “strong”, “tough”, “independent”. When Caleb was diagnosed, I felt I had to be those things. Because that’s who I was after all. Why should this be any different?

What I remember of the days following Caleb’s diagnosis is Caleb being very strong. His grandparents had just left for their annual stint to Florida and they wanted to come home to see him. We took pictures of Caleb smiling and being “tough” so that they could see that he was okay and they didn’t need to rush home.

There were moments of anxiety. The occasional resistance to an injection. The refusal to eat. Caleb was three. I can only assume how he must have felt. That he now had all these rules. There was no compromising on so many new things. He was being forced into this box. Who can blame someone, particularly at that age, to put up a fight every once in a while? He did. But overall he was, and always has been, a champ with few complaints about diabetes.

I remember explaining things to his older brother, Colin, who was six years old at the time. His reaction was, “I wish this happened to me and not Caleb.”

I remember welling up at the sight of any picture of Caleb in my home. All those pictures were of a boy and a life that was gone. Those were picture of the “before”. We would never know life as it was in those pictures again. We were now in the “after”. And the after was dismal.

And the books. I went to the library and took out any book they had with a reference to diabetes. Those books were dreadful. There are two things that stand out from all those books: (1) the complications – the amputations, heart failure, blindness, kidney failure, etc. and (2) the story of the little girl at a birthday party who had to eat an apple while all the other kids chowed down on cake and ice cream. That’s what I remember of my early reading.

I had never cried so much in my life as I did in those weeks of “after”. I could not even remember the last time I had cried before this all started. Because I was “tough”, remember?

I remember all the things people said to try to make me feel better. How it could be worse. How there is so much hope for a cure. I remember knowing not a single person who directly knew about caring for someone with type 1 diabetes. I had absolutely no one to whom I could relate.

I can safely say, to date, those were the worst days of my life.

This brings me to why I started this blog. I want people to know that there are people who understand out there. I want people to find places like Children with Diabetes, and TuDiabetes a lot quicker than I did. I want people to find the right books like Think Like a Pancreas and Type 1 Diabetes, before they start reading those horrid other texts.

Help is here. It will be tough at times, but it will be ok.

We were lucky

Caleb just days before diagnosis.
Caleb just days before diagnosis.

So if you have read my other posts you know that we waited even when we strongly suspected that Caleb had type 1 diabetes. On New Year’s Eve, we did not rush to the ER or even call the doctor. We waited 2 days to call the doctor and didn’t even see a doctor until the day after we called. I did not know the symptoms and for weeks did nothing about his thirst and frequent bathroom use. I knew nothing about the risks.

When Caleb was diagnosed his A1C was 9.8. He was not in ketoacidosis. He must have been somewhat dehydrated, but not severely. He was not sick. But for the fact that there is no out-patient training for type 1 diabetes where we are, I believe he would not have been admitted.

We were lucky. Very lucky.

If you see the telltale signs of diabetes – thirst, frequent urination, weight loss, lethargy – do not wait. Holiday or otherwise – do not wait. Seek medical attention. At a minimum, buy an inexpensive glucose meter and check your blood sugar. If out of the normal range, seek medical attention IMMEDIATELY. Left untreated, even for just days, things can get out of control quickly. Here is a story that shows how quickly things can get very serious.

Do not wait.

When I knew

Caleb a week before diagnosis.  Notably thin, although we didn't realize why at the time.
Caleb a week before diagnosis. Notably thin, although we didn't realize why at the time.

With almost no knowledge about type 1 diabetes, we waited. It was a holiday after all – the doctor’s office wasn’t even open. We had just had such an amazing week. We celebrated Christmas and we were all home from work and school and everyone was getting along swimmingly. How could this be happening? Not us.

We started timing how often he went to the bathroom. At times it was in 20 minute intervals. I had been telling myself this was growth – he was always asking for “icy cold milk, please” and of course he had to go to the bathroom a lot with all that milk, right?

Okay, well he’ll get back into his routine when he goes back to school. It will be fine. We’re just out of sync.

So I pull into the school parking lot on January 2nd and as he climbs out of the van he says, “Mom, I want some icy, ice cold milk.” Oh, no. Please. You don’t. No way. Then I talk to his teacher. I ask her to look out to see if he’s going to the bathroom more often than normal and she says, “oh”. I say, “what?” Just hoping, my very last hope, that she knows something I don’t. That she will tell me about her friend or relative who went through this and the child grew out of it. That it’s a sign of this cold or that virus that is going around. But of course, she doesn’t say any of those things. She says that word again. She says, “diabetes”.

That’s when I knew.

I tried to control myself, but the tears overflowed. Nevertheless, not having a clue of the potential severity of the situation, I left Caleb at school and went to the DMV to renew my license. I have that license in my wallet and only I can see in the picture the puffiness around my eyes. It’s a constant reminder of when I was given Caleb’s diagnosis – by his preschool teacher.

We called the pediatrician early that afternoon when Caleb got home from school and told them our concerns and our desire to see a doctor. We told them that we believed he had type 1 diabetes. Knowing what I know now, I find it amazing that he was not seen immediately or sent to the ER, but given an appointment first thing the next morning. January 3rd is the official day of Caleb’s diagnosis.

But that was all a formality. I knew the day before.

When it all changed

Caleb the day after being diagnosed with type 1 diabetes.
Caleb the day after being diagnosed with type 1 diabetes.

He had been thirsty and frequently going to the bathroom for weeks. A quick internet search by my husband on New Year’s Eve, just hours before guests were to arrive, and we had the first hint of what was about to change our lives.

We now know these are telltale signs. We did not know it then. He was thinner, but we just thought that was part of his growth – he was no longer a baby after all.

On January 3rd, it was confirmed. We visited his pediatrician suspecting type 1 diabetes. After a urine and blood test, we were directed to the ER of Yale-New Haven’s Children’s Hospital. Do not pass go, do not collect $200.

We were told little: that his blood sugar was in the high 200s, and that someone without diabetes could eat an entire chocolate cake and still not go much above 140. But the bloodwork was being done to see for sure.

Before we ever got those results, Caleb was admitted. He was in a room with a 6 year old girl going through the exact same thing, just a day ahead of Caleb.

Caleb endured the IV. He endured the lancet and the injections. He was still three years old.

The mom of the girl next to us tried to console me within minutes of getting to the room. She showed me the needle. It was thin. It was flexible. She told me it could be so much worse. She had a friend whose daughter was dying of cancer. I know she was trying to help. But this did not help. I didn’t care that the needle was small and thin. It was still a needle. I didn’t care about that little girl or anyone else at that moment in time. All that mattered to me was that my little Caleb’s life was now changed. He didn’t deserve this.

I told my husband all I wanted was for him to grow. To grow normally. To be the tall, muscular young man I knew he would one day become before this diagnosis. I wanted him to be smart. That’s all I wanted then – for his body and brain to beat this disease.

I spent the night with Caleb in his bed that night. Brought him to the bathroom with his IV pole. Protected him from insensitive nurses. I slept little.

The following day we met with nurses, social workers, nutritionists, oh and the doctor who finally came to tell us that Caleb had type 1 diabetes.