So a few months ago we had a little problem.
M's pump broke.
That's right, it broke. It started scrolling numbers independently and did not deliver insulin or anything else.
Now, I have to say that Medtronic makes a pretty tough insulin pump. M drops it on the floor from the chair in which she watches television on a fairly regular basis. It is often unprotected at the bottom of field hockey and lacrosse equipment bags, and she shoves it in the map pocket of my car when she goes for a swim on hot days.
So I can't complain. And neither can she.
We made this terminal discovery on the way home from a lacrosse game.
Typically I attend M's games so as to relieve pressure on the coaches as far as looking out for M's diabetic needs. She has not had a problem during a game since high school, but I think the girls on the team also kind of like the idea of that crazy mom coming to every game, even if it's two hours away. Bonus: I get to see her play every time. On a few occasions I have been the only "away" parent in attendance. Unfortunately for the team, I am not a yeller. I am an urgent whisperer, which means they don't really hear my cheers of support. But I digress.
Although I encourage M to take the bus back from the game as part of the team bonding experience, she has thus far declined my offer and rides with me in the car, usually chowing down on a sandwich and a bag of chips, while beating herself up over the goals that the opposing team scored.
This is how it went down:
M: (fiddling with the device) "What the....?"
Me: "What's the matter?"
M: "This stupid pump! It did this this morning, but I got it to work. Now it just won't stop scrolling numbers!"
Me: (slowing down and taking my eyes off the road), "What? It was doing it this morning?"
M: (Smacking the device with the palm of her hand) "Yeah, I thought it was the battery. But I changed the battery at school, so that's not it."
Me: "Did you try....?"
Needless to say, voices continued to rise in tension and anxiety. I had M check her bg levels.
Fortunately they were pretty even, buying us some time until we could give her an injection at home. But we soon realized that we would have to do something to solve this problem more long-term.
Since we were in the car and the pharmacy was closed, we decided to use modern technology to help solve our problem. M looked on the back of the pump and found a toll free number to call. After a brief argument in which she tried to convince ME to call, I, as the driver of the car, convinced her to dial the number.
She did. And she did an amazing job.
She talked to the representative from the company, explained who she was and what was happening. After about 10 minutes, the rep determined that M's pump was beyond repair and needed to be replaced immediately. M gave the rep all of the necessary information, and then did something very smart: she asked if it was under warranty.
Now I can truly say that my baby was growing up!
It was, indeed, under warranty, which meant that a "free" purple replacement was on its way.
M concluded the phone call with her pump company, who recommended that she contact her DNE.
With a heavy sigh, M dialed her new DNE at Dartmouth Hitchcock, knowing that it was after hours and that she would need to talk to the answering service and wait for a call back.
The DNE returned her call right away, told her to take an injection of Levemir; the long-lasting insulin that typically goes wasted in our fridge, and asked when the pump was due to arrive.
It was due to arrive in two days, which I found incredible, but the DNE found disappointing. She told M that they are typically shipped to arrive within 24 hours. Then she and M had to figure out her carb ratios and correction factors for the next couple of days of injections. The phone call concluded mere minutes before we landed in our driveway.
M moaned that she had forgotten how much more work it was to calculate, draw up insulin and inject oneself several times each day. But she also felt really proud about handling her own care, and was pleased to have a plan, even if it was less than ideal.
I was also proud. And relieved. She moved one step closer toward independence by handling an equipment malfunction without any interference from me. And I was around to witness it and see that she did it well.
When we arrived home after lacrosse practice the next day, there was a sticky note from UPS on our door. We had missed them, and our package needed a signature. The pump had arrived within 24 hours after all!
I called the number on the note, and learned that we could pick up our package in person between 8:00 pm and 9:00 pm that night. Even though the center was a 45 minute drive from our house, M and I eagerly jumped in the car to do just that.
We tore open the box in the car. Pump in hand, M gleefully looked forward to getting away from her injections yet again.
We carefully read everything in the package, and learned that we had two weeks to return the broken pump via a pre-paid envelope. Failure to do so would cause us to be billed for the entire cost of a new pump (about $6500!). Needless to say, that sucker was in the mail before I went to bed that night!
Medtronic made it pretty easy. It was brilliant that their customer service number is right next to the serial number on the pump itself. Their service was excellent, and saved M a lot of inconvenience. And M, up for the challenge, enjoyed the sweet relief of knowing that she could handle it.
Showing posts with label pump therapy. Show all posts
Showing posts with label pump therapy. Show all posts
Tuesday, July 16, 2013
Friday, December 7, 2012
Empty
I have noticed that M is balancing her diabetes care pretty well over the last few months.
Don't get me wrong. She still has plenty of bad habits.
She leaves bloody test strips in her meter case. Sharps from her infusion set are frequently left in the open, or on the floor, even.
But there is one thing that she seems to be doing more and more frequently these days, and it concerns me. She is waiting until the last minute to change her infusion set. And by "last minute", I mean that she waits until there is no insulin left in the cartridge.
You see, the insulin pump looks like a pager. In the "pager" part, is a little reservoir cartridge which holds insulin; usually enough for a few days. There is tubing that leads from the pump to the cannula, which is the little straw thing that is inserted under M's skin and distributes the insulin that the pump sends from the reservoir.
"Are you sure that she knows that she is low on insulin?" you might ask.
Oh my, yes!
Pump manufacturers are geniuses, you know. They have all kinds of user error prevention going on in that little device. There is a "low reservoir" alarm which lets M know, through a noisy and rigorous vibrating, that she has a couple of hours of insulin left, and that she had better get all of her medical stuff together so that she won't run out.
Up until recently, when the alarm sounded M would go immediately to the medicine cabinet to get a new infusion set, and go the fridge to get another bottle of insulin.
But friends happen.
The first time I remember M waiting until she had run out of insulin, we ended up staying very late into the night until her blood glucose reading returned to under 200. That night, she knew that she would run out of insulin during a play at her high school, but she didn't want to keep her friends waiting while she changed her infusion set.
Then she ate a Reese's Peanut Butter Cup.
Then chaos ensued.
It was an unplanned, exhausting, and clear lesson in "doing what you have to do when you have to do it."
But only part of the lesson was learned, it seems. After all, she will still choose not to respond to her alarm in a timely fashion.
Now when she does it though, it seems to be more calculated. She figures out how much insulin she will need to get her through the night, and if she thinks it's going to be close, she'll simply go to bed, ignore the infernal buzzing of the pump's alarm system, wake up the next morning with a somewhat high bg reading, and then change her infusion set.
Not recommended, by the way. Those alarms are there for a reason, missy!
Maybe she is trying to save herself time and effort. Maybe she is trying to save our family from higher-than-necessary medical bills. I am not sure what motivates her to wait, but it makes me nervous.
As M is often the child that needs to learn things through experience, we may just have to hope that her calculations and time estimates are always correct.
In the meantime, I will apply the usual dose of nagging.
Don't get me wrong. She still has plenty of bad habits.
She leaves bloody test strips in her meter case. Sharps from her infusion set are frequently left in the open, or on the floor, even.
But there is one thing that she seems to be doing more and more frequently these days, and it concerns me. She is waiting until the last minute to change her infusion set. And by "last minute", I mean that she waits until there is no insulin left in the cartridge.
You see, the insulin pump looks like a pager. In the "pager" part, is a little reservoir cartridge which holds insulin; usually enough for a few days. There is tubing that leads from the pump to the cannula, which is the little straw thing that is inserted under M's skin and distributes the insulin that the pump sends from the reservoir.
"Are you sure that she knows that she is low on insulin?" you might ask.
Oh my, yes!
Pump manufacturers are geniuses, you know. They have all kinds of user error prevention going on in that little device. There is a "low reservoir" alarm which lets M know, through a noisy and rigorous vibrating, that she has a couple of hours of insulin left, and that she had better get all of her medical stuff together so that she won't run out.
Up until recently, when the alarm sounded M would go immediately to the medicine cabinet to get a new infusion set, and go the fridge to get another bottle of insulin.
But friends happen.
The first time I remember M waiting until she had run out of insulin, we ended up staying very late into the night until her blood glucose reading returned to under 200. That night, she knew that she would run out of insulin during a play at her high school, but she didn't want to keep her friends waiting while she changed her infusion set.
Then she ate a Reese's Peanut Butter Cup.
Then chaos ensued.
It was an unplanned, exhausting, and clear lesson in "doing what you have to do when you have to do it."
But only part of the lesson was learned, it seems. After all, she will still choose not to respond to her alarm in a timely fashion.
Now when she does it though, it seems to be more calculated. She figures out how much insulin she will need to get her through the night, and if she thinks it's going to be close, she'll simply go to bed, ignore the infernal buzzing of the pump's alarm system, wake up the next morning with a somewhat high bg reading, and then change her infusion set.
Not recommended, by the way. Those alarms are there for a reason, missy!
Maybe she is trying to save herself time and effort. Maybe she is trying to save our family from higher-than-necessary medical bills. I am not sure what motivates her to wait, but it makes me nervous.
As M is often the child that needs to learn things through experience, we may just have to hope that her calculations and time estimates are always correct.
In the meantime, I will apply the usual dose of nagging.
Sunday, February 19, 2012
Dangerous and Unintended Consequences
It all started Friday evening, as I was reading the headlines to my husband, Bill. A little article on the front page of the Concord Monitor caught my eye. "New guidlines to prevent distracted driving".
It seems that our U.S. Transporation Secretary, Ray LaHood, has released new federal guidelines for automakers to help prevent distracted driving. He recommends that manufacturers create a device that will block cell phones from working in the car while the wheels are in motion.
Then Mr. LaHood went on to say that the guidelines might be extended to "all portable electronic devices that might find their way into a car."
I told Bill that to me, a "Live Free or Die" New Hampshirite, this seems ridiculous. After all, I don't text or talk on the cell phone while driving, but sometimes I have my children make a call to our destination while I am driving, and they are safely in one of the passenger seats. "Honey, call Grandma and let her know we should be there after lunch" never seemed to threaten our safety as a family on the move.
And while my kids don't have Gameboys or DVD players,I see no problem with letting kids play games on electronic devices while in a car. I thought about how the government tried to force car manufacturers to make seatbelts that belt people in whether they wanted to be or not (remember those cars with the moving seatbelts that hummed into place when you turned the key?).
I supposed out loud that the manufacturing guidelines might be effective, but that going to extreme of blocking all devices seemed silly.
"Don't you think M should be able to text a friend while I am driving?"
Then Bill said, "I wouldn't worry about the texting. I would worry about her insulin pump."
Oh.....
The insulin pump.
That thing that keeps my daughter alive. The portable thing that electronically delivers life-giving insulin to her body. The device that communicates with her glucometer to determine how much insulin she she administer when she eats.
That thing.
She will be driving soon.
If we have a car in which her insulin pump is disabled, she could kill someone, cause a serious accident, or die. If she is in a friend's car with the proposed technology, she could have a medical emergency for which her friend is unprepared. (Talk about distracted driving!)
This is not alarmist "someone could hack into my pump" bologna. After all, hacking into someone's insulin pump would be the least efficient form of terrorism ever.
But this.
This is a genuine hazard.
The thing is, infusion pumps are not only for people on insulin. Some are used for pain medication, or medicine to assist in healing spinal cord injuries. What if these infusion sets are disabled?
Any car that M entered might disable her pump if these guidelines are implemented. And those who have learned to manage their chronic, life-threatening illnesses, might just have to do without.
It is time to act. I am contacting my congressional representatives.
I would appreciate it if you did the same, before the unintended consequences of these guidelines become a reality.
It seems that our U.S. Transporation Secretary, Ray LaHood, has released new federal guidelines for automakers to help prevent distracted driving. He recommends that manufacturers create a device that will block cell phones from working in the car while the wheels are in motion.
Then Mr. LaHood went on to say that the guidelines might be extended to "all portable electronic devices that might find their way into a car."
I told Bill that to me, a "Live Free or Die" New Hampshirite, this seems ridiculous. After all, I don't text or talk on the cell phone while driving, but sometimes I have my children make a call to our destination while I am driving, and they are safely in one of the passenger seats. "Honey, call Grandma and let her know we should be there after lunch" never seemed to threaten our safety as a family on the move.
And while my kids don't have Gameboys or DVD players,I see no problem with letting kids play games on electronic devices while in a car. I thought about how the government tried to force car manufacturers to make seatbelts that belt people in whether they wanted to be or not (remember those cars with the moving seatbelts that hummed into place when you turned the key?).
I supposed out loud that the manufacturing guidelines might be effective, but that going to extreme of blocking all devices seemed silly.
"Don't you think M should be able to text a friend while I am driving?"
Then Bill said, "I wouldn't worry about the texting. I would worry about her insulin pump."
Oh.....
The insulin pump.
That thing that keeps my daughter alive. The portable thing that electronically delivers life-giving insulin to her body. The device that communicates with her glucometer to determine how much insulin she she administer when she eats.
That thing.
She will be driving soon.
If we have a car in which her insulin pump is disabled, she could kill someone, cause a serious accident, or die. If she is in a friend's car with the proposed technology, she could have a medical emergency for which her friend is unprepared. (Talk about distracted driving!)
This is not alarmist "someone could hack into my pump" bologna. After all, hacking into someone's insulin pump would be the least efficient form of terrorism ever.
But this.
This is a genuine hazard.
The thing is, infusion pumps are not only for people on insulin. Some are used for pain medication, or medicine to assist in healing spinal cord injuries. What if these infusion sets are disabled?
Any car that M entered might disable her pump if these guidelines are implemented. And those who have learned to manage their chronic, life-threatening illnesses, might just have to do without.
It is time to act. I am contacting my congressional representatives.
I would appreciate it if you did the same, before the unintended consequences of these guidelines become a reality.
Thursday, January 12, 2012
Not that, mom!
M has a problem with her pants (trousers for you Brits).
She likes to wear skinny jeans and pants with funky pockets on the side of the leg.
While this might not be a problem for most teens, neither of these styles is conducive to carrying an insulin pump.
But M tries anyway.
So about three times a week I hear that hissing "Ouch" that many of us use when we break our nails or stub our toes: the "ouch" that lets me know that the pump has fallen from a pocket and is now dangling from her infusion site. If I hear an accompanying "thud" then I know that the infusion set has been ripped out of her skin and is now delivering insulin to my floor.
Her clip broke, so she can't simply clip the pump to her pants. I recommended that she tuck it in her underwear, her bra, anything that might hold it securely into position.
She says it looks stupid and/or is uncomfortable.
So, instead of ordering a new clip like a normal mother, I take a look at tummietoes, which have been mentioned by multiple D-bloggers as great solutions for pump storage when exercising or going out in fancy clothes.
I mention tummietotes to M, and am immediately reminded of an episode of The Simpsons in which the whole family visits an IKEA-like store. In the episode, Marge offers to buy Lisa a new pencil holder called a Pupli (with two dots over the "u"). Lisa looks at her mother and says, "Mom! Not a Pupli! Even I make fun of the Pupli kids!"
M informs me that really only the dorky girls wear the tummietotes at D-camp.
I point out that if she wears it under her clothes, no one will even know that she is wearing it. And it is comfortable and convenient
M indicates that I just don't get it.
I look at the website again. And you know what, they do look dorky. But I don't care. They are available in black and white and other colors suitable for under the clothes. And they are supposed to be comfortable.
I make M look.
She relents.
"All right, Mom. If you want to spend your money on that, I will try it."
Victory!
Now if I can just scrape up the $25.....
She likes to wear skinny jeans and pants with funky pockets on the side of the leg.
While this might not be a problem for most teens, neither of these styles is conducive to carrying an insulin pump.
But M tries anyway.
So about three times a week I hear that hissing "Ouch" that many of us use when we break our nails or stub our toes: the "ouch" that lets me know that the pump has fallen from a pocket and is now dangling from her infusion site. If I hear an accompanying "thud" then I know that the infusion set has been ripped out of her skin and is now delivering insulin to my floor.
Her clip broke, so she can't simply clip the pump to her pants. I recommended that she tuck it in her underwear, her bra, anything that might hold it securely into position.
She says it looks stupid and/or is uncomfortable.
So, instead of ordering a new clip like a normal mother, I take a look at tummietoes, which have been mentioned by multiple D-bloggers as great solutions for pump storage when exercising or going out in fancy clothes.
I mention tummietotes to M, and am immediately reminded of an episode of The Simpsons in which the whole family visits an IKEA-like store. In the episode, Marge offers to buy Lisa a new pencil holder called a Pupli (with two dots over the "u"). Lisa looks at her mother and says, "Mom! Not a Pupli! Even I make fun of the Pupli kids!"
M informs me that really only the dorky girls wear the tummietotes at D-camp.
I point out that if she wears it under her clothes, no one will even know that she is wearing it. And it is comfortable and convenient
M indicates that I just don't get it.
I look at the website again. And you know what, they do look dorky. But I don't care. They are available in black and white and other colors suitable for under the clothes. And they are supposed to be comfortable.
I make M look.
She relents.
"All right, Mom. If you want to spend your money on that, I will try it."
Victory!
Now if I can just scrape up the $25.....
Sunday, November 27, 2011
HIGH school
Not all of my diabetes excitement comes from having my own offspring afflicted with diabetes.
Teaching high school, I have other young ones for whom I am responsible, and at times, they have diabetes. When working with these students, I feel grateful for my knowledge and experience with the disease, although I wouldn't have minded acquiring the knowledge in some other way.
One of these students is in the school's Spanish Honor Society. He has had Type 1 diabetes since he was three years old. I have had several conversations with his parents about the experience of having such a young child with Type 1, and boy, do I not envy them.
Last week we were holding a meeting of the club, for which I am an advisor. During the meeting, the young man checked his bg levels, which were just over 300. After checking his bg, he left the room huriedly.
The students in the room knew how this could go. One of them asked me, "Did he go to throw up?"
I didn't know, but I knew that he needed to get his bg down soon.
Often when he is nauseous, this student needs some water, so I left the room to get a couple of cups of water for him for when he returned.
When he did return, he said, "Sweet. Water." and downed the two cups.
I asked him if he had bolused.
He said he had over an hour ago, and since his bg hadn't dropped since then, he had better go home.
Alarm bells went off in my head: I knew this kid had recently acquired his driver's license, a must for teens in rural areas like the one in which I teach.
"How will you get home?" I asked.
"Drive," he said.
"Oh no, you don't," I said. "Let me call the nurse to see if she is still here. If we can't get your bg down, I will drive you home."
The student explained that he thought that when he inserted his infusion set, it might not have installed properly, so he might need to change it.
"Do you have a spare one?" I asked.
"Not on me," he said.
The nurse wasn't at the school (after all, it was about an hour after school was over), but the student went to the main office to have someone unlock the door to his diabetic supplies, so that he could access his spare infusion sets. Then he returned to the classroom.
He was a little wound up. He sat on one of the desks and removed his infusion set. I peppered him with questions about how long it typically takes for his body to respond to the insulin, and whether he had a syringe, just in case. While he answered my questions, he unwrapped the infusion set and lifted his shirt, pinching the skin on his belly.
At this point the club president said, "Oh my God, are you going to do that NOW?"
I think he and I both gave her the same look, because she made some apologetic noises and discreetly turned her head to talk with a friend.
While he put in the infusion set, we set the timer on the computer for him to check his bg again in 15 minutes. Then I made him promise to check it one last time before he left.
Needless to say, our meeting about planning a day trip to NYC was thrown way off topic. By this time it was nearly one and a half hours after school ended. The meeting was adjourned, and the kids went home.
I left the school with a number of things on my mind. My diabetic student, evidently, was not one of them. About halfway home, I realized that I never did have him check with me before he got in the car to drive away. Just like M, he probably never gave it another thought, thinking he was perfectly all right, and that he could handle it, even if his bg was too high.
After my half-hour commute, I made the phone call.
He answered the phone, obviously having made it home safely.
I told him who it was and that I just wanted to make sure he was okay. He immediately apologized for worrying me; it had slipped his mind.
He's a really nice kid.
But I am glad that I only have one of these at home.
Teaching high school, I have other young ones for whom I am responsible, and at times, they have diabetes. When working with these students, I feel grateful for my knowledge and experience with the disease, although I wouldn't have minded acquiring the knowledge in some other way.
One of these students is in the school's Spanish Honor Society. He has had Type 1 diabetes since he was three years old. I have had several conversations with his parents about the experience of having such a young child with Type 1, and boy, do I not envy them.
Last week we were holding a meeting of the club, for which I am an advisor. During the meeting, the young man checked his bg levels, which were just over 300. After checking his bg, he left the room huriedly.
The students in the room knew how this could go. One of them asked me, "Did he go to throw up?"
I didn't know, but I knew that he needed to get his bg down soon.
Often when he is nauseous, this student needs some water, so I left the room to get a couple of cups of water for him for when he returned.
When he did return, he said, "Sweet. Water." and downed the two cups.
I asked him if he had bolused.
He said he had over an hour ago, and since his bg hadn't dropped since then, he had better go home.
Alarm bells went off in my head: I knew this kid had recently acquired his driver's license, a must for teens in rural areas like the one in which I teach.
"How will you get home?" I asked.
"Drive," he said.
"Oh no, you don't," I said. "Let me call the nurse to see if she is still here. If we can't get your bg down, I will drive you home."
The student explained that he thought that when he inserted his infusion set, it might not have installed properly, so he might need to change it.
"Do you have a spare one?" I asked.
"Not on me," he said.
The nurse wasn't at the school (after all, it was about an hour after school was over), but the student went to the main office to have someone unlock the door to his diabetic supplies, so that he could access his spare infusion sets. Then he returned to the classroom.
He was a little wound up. He sat on one of the desks and removed his infusion set. I peppered him with questions about how long it typically takes for his body to respond to the insulin, and whether he had a syringe, just in case. While he answered my questions, he unwrapped the infusion set and lifted his shirt, pinching the skin on his belly.
At this point the club president said, "Oh my God, are you going to do that NOW?"
I think he and I both gave her the same look, because she made some apologetic noises and discreetly turned her head to talk with a friend.
While he put in the infusion set, we set the timer on the computer for him to check his bg again in 15 minutes. Then I made him promise to check it one last time before he left.
Needless to say, our meeting about planning a day trip to NYC was thrown way off topic. By this time it was nearly one and a half hours after school ended. The meeting was adjourned, and the kids went home.
I left the school with a number of things on my mind. My diabetic student, evidently, was not one of them. About halfway home, I realized that I never did have him check with me before he got in the car to drive away. Just like M, he probably never gave it another thought, thinking he was perfectly all right, and that he could handle it, even if his bg was too high.
After my half-hour commute, I made the phone call.
He answered the phone, obviously having made it home safely.
I told him who it was and that I just wanted to make sure he was okay. He immediately apologized for worrying me; it had slipped his mind.
He's a really nice kid.
But I am glad that I only have one of these at home.
 |
| No such luck. Maybe next time, kid. |
Friday, November 25, 2011
Reboot
Things have been going well, diabetically speaking. M has finished her field hockey season and was designated MVP of her team. Now she is living a more sedentary life. Her grades are going up, as are her blood sugars.
Higher blood glucose readings are to be expected. After all, exercise keeps bg down. Remove the daily 2 mile runs and 1 hour practices, and the bg will go up. So, although it is a bit of a bummer, it is not an unexpected one.
About two weeks after her last game, we noticed M's bgs creeping upward. We adjusted her basal rate by 0.25 units per hour over all.
Her pump had been delivering a steady stream of 3.0 units of insulin per hour at night, and 3.25 units per hour during the day. The basal rate, in theory, is the part that will keep her bg within range when she is not eating. Anything she gives herself when she eats is considered a bolus.
So now she was up to 3.25 at night, and 3.5 during the day, but we did have to make another adjustment about a week later. It seemed we had found the magic numbers. She was healthy, and her numbers seemed to be doing well.
On the Wednesday before Thanksgiving, we drove to pick up big brother at the airport. Since I was not driving, I though I would ask to see M's meter so that I could see how she had been doing the last few days.
She pulled the meter out.
She paused.
She started flipping through her numbers.
This is when I knew that something was up.
"You know, M, " I said casually, "I can read the meter all by myself. Just hand it up."
Long pause. Frantic pushing of buttons.
"M, hand it up," I repeated.
"There's something I have to tell you, " M said.
"Here it comes," I thought.
"Some of my numbers are missing, because I have been forgetting my meter when I go to school. So if you see any missing numbers, it's because I used my other meter at school."
When I collected the meter, I flipped through the numbers for the day. Except that there was only ONE number for the day. In fact, it was the only number for TWO days. She had only checked her bg on that meter six times since October 30th.
Here we go again.
"M," I said, "You told me that your bg was 131 this morning. That number is not here. Did you run to school and use the meter there to check it?"
No answer.
Rather than give her "buck up" speech, I said this.
"All right. starting today you will be checking your bg six times per day, and I will need to see it."
And that was all.
I was worried. I was furious. But yelling was not going to cut it. And neither was telling her that she was putting her life in danger.
So yesterday and today: six times, and I see them all.
Which is great because I can monitor her.
Which is not great, because how is she going to be responsible enough to do it herself? Ever?
I don't know.
But we will need to figure it out.
Higher blood glucose readings are to be expected. After all, exercise keeps bg down. Remove the daily 2 mile runs and 1 hour practices, and the bg will go up. So, although it is a bit of a bummer, it is not an unexpected one.
About two weeks after her last game, we noticed M's bgs creeping upward. We adjusted her basal rate by 0.25 units per hour over all.
Her pump had been delivering a steady stream of 3.0 units of insulin per hour at night, and 3.25 units per hour during the day. The basal rate, in theory, is the part that will keep her bg within range when she is not eating. Anything she gives herself when she eats is considered a bolus.
So now she was up to 3.25 at night, and 3.5 during the day, but we did have to make another adjustment about a week later. It seemed we had found the magic numbers. She was healthy, and her numbers seemed to be doing well.
On the Wednesday before Thanksgiving, we drove to pick up big brother at the airport. Since I was not driving, I though I would ask to see M's meter so that I could see how she had been doing the last few days.
She pulled the meter out.
She paused.
She started flipping through her numbers.
This is when I knew that something was up.
"You know, M, " I said casually, "I can read the meter all by myself. Just hand it up."
Long pause. Frantic pushing of buttons.
"M, hand it up," I repeated.
"There's something I have to tell you, " M said.
"Here it comes," I thought.
"Some of my numbers are missing, because I have been forgetting my meter when I go to school. So if you see any missing numbers, it's because I used my other meter at school."
When I collected the meter, I flipped through the numbers for the day. Except that there was only ONE number for the day. In fact, it was the only number for TWO days. She had only checked her bg on that meter six times since October 30th.
Here we go again.
"M," I said, "You told me that your bg was 131 this morning. That number is not here. Did you run to school and use the meter there to check it?"
No answer.
Rather than give her "buck up" speech, I said this.
"All right. starting today you will be checking your bg six times per day, and I will need to see it."
And that was all.
I was worried. I was furious. But yelling was not going to cut it. And neither was telling her that she was putting her life in danger.
So yesterday and today: six times, and I see them all.
Which is great because I can monitor her.
Which is not great, because how is she going to be responsible enough to do it herself? Ever?
I don't know.
But we will need to figure it out.
 |
| Not shocked this time! |
Saturday, August 6, 2011
Injections better than the pump?
Nobody wants to say that giving oneself six or more shots per day is preferable to the simplicity and elegance of using an insulin pump. So I expect to hear some screaming from the DOLC.
I have been thinking a lot about this issue since we found out that M had been getting "creative" with her diabetes management.
To be sure: with the pump one still must check one's bg six or more times per day, which still requires the sticking of fingers with little sharp things called lancets. One must also change the infusion set, a set with tubing attached to insulin, with a little straw, or cannula, sticking into the skin. That means that every three days or so, one must use a needle to get the infusion set into one's skin so that the pump can deliver the appropriate insulin.
So life with the pump is not entirely needle-free.
But it is way more convenient, especially if you want to take a snack.
Which is why I feel that I can argue that injections might be better for some patients.
One of the reasons I noticed that M's bg numbers were manufactured is that we were at the beach, and she was eating constantly, like most teenagers. On top of that, the foods she was eating were not optimal PWD fodder.
Because of safety precautions put in place by pump manufacturers, however, M was not able to bolus every time she ate. In an effort to prevent life-threatening lows, she cannot bolus within a half and hour of her last bolus. While this means that her life will be safer, it also means that if M is pigging out, and especially if she is not able to bolus for the extra food, her bg will necessarily be higher than normal.
When her reported bgs were in range, or just outside of it, I knew something was up.
Now, when M was using the insulin pen, we didn't have this problem. If she wanted to pig out, she would plan her snack, and give herself an injection. If she wanted to eat more right away, she would have to give herself another injection. Since injections are unpleasant, as well as a hassle, she often chose not to pig out - a clearly healthier decision.
Maybe some kids are not suited to use the pump. It says a lot that after three months on the pump, M's bg went from 6.4 to 9.
As M enters high school and becomes increasingly self-conscious about appearances, she will likely want to do whatever her friends are doing: eating pizza, eating popcorn and candy at the movies, and generally assuming that she will live forever, like most teens.
What she will not want to do, I am guessing, is say that "I need to count carbs, so no thanks, I'll pass on the baklava, Bosco, Blizzard."
The pump is making it easier for M to blend in and make less of a big deal about her diabetes. But I am on the fence about whether that's a good thing or not. If she flies under the radar too well, she may not keep herself as healthy as she should.
I hope that she will defy the teen odds, and put her health ahead of her need to conform.
Being a high school teacher, however, I have my doubts.
Unfortunately, I will just have to wait and see. Only time will tell.
I have been thinking a lot about this issue since we found out that M had been getting "creative" with her diabetes management.
To be sure: with the pump one still must check one's bg six or more times per day, which still requires the sticking of fingers with little sharp things called lancets. One must also change the infusion set, a set with tubing attached to insulin, with a little straw, or cannula, sticking into the skin. That means that every three days or so, one must use a needle to get the infusion set into one's skin so that the pump can deliver the appropriate insulin.
So life with the pump is not entirely needle-free.
But it is way more convenient, especially if you want to take a snack.
Which is why I feel that I can argue that injections might be better for some patients.
One of the reasons I noticed that M's bg numbers were manufactured is that we were at the beach, and she was eating constantly, like most teenagers. On top of that, the foods she was eating were not optimal PWD fodder.
Because of safety precautions put in place by pump manufacturers, however, M was not able to bolus every time she ate. In an effort to prevent life-threatening lows, she cannot bolus within a half and hour of her last bolus. While this means that her life will be safer, it also means that if M is pigging out, and especially if she is not able to bolus for the extra food, her bg will necessarily be higher than normal.
When her reported bgs were in range, or just outside of it, I knew something was up.
Now, when M was using the insulin pen, we didn't have this problem. If she wanted to pig out, she would plan her snack, and give herself an injection. If she wanted to eat more right away, she would have to give herself another injection. Since injections are unpleasant, as well as a hassle, she often chose not to pig out - a clearly healthier decision.
Maybe some kids are not suited to use the pump. It says a lot that after three months on the pump, M's bg went from 6.4 to 9.
As M enters high school and becomes increasingly self-conscious about appearances, she will likely want to do whatever her friends are doing: eating pizza, eating popcorn and candy at the movies, and generally assuming that she will live forever, like most teens.
What she will not want to do, I am guessing, is say that "I need to count carbs, so no thanks, I'll pass on the baklava, Bosco, Blizzard."
The pump is making it easier for M to blend in and make less of a big deal about her diabetes. But I am on the fence about whether that's a good thing or not. If she flies under the radar too well, she may not keep herself as healthy as she should.
I hope that she will defy the teen odds, and put her health ahead of her need to conform.
Being a high school teacher, however, I have my doubts.
Unfortunately, I will just have to wait and see. Only time will tell.
 | |
| "That's okay, I can bolus for that." |
Tuesday, August 2, 2011
A1C 9
After discovering that M was guessing what her blood glucose levels might be, it was hard to act surprised when the DNE came in with the report that M's A1C was 9 this visit. (Attention non-D people: this is very bad!)
This was the highest it had ever been - even when she was first diagnosed.
The DNE came into the room, trying not to betray her concern when she said that M's numbers looked good, but that her A1C was a 9. M and I nodded. I said, "I can't say that I am surprised."
The DNE's eyebrows shot up, and she asked why it wasn't surprising.
To her credit, M launched into an explanation about her methods for tracking her progress over the last few weeks.
The DNE listened silently, and when M was finished explaining what she had done, she asked her when she stopped using this method.
M replied, "When my mom caught me."
As her eyebrows disappeared further into her hair, the DNE asked me how I caught M lying about her bg levels. I explained my methods, and the DNE congratulated me on my powers of observation, adding that not all parents would notice after a week or so (Big pat on the back for the "control freak" mother).
Then she asked M why she did it.
M said that she's just sick of being diabetic. She's tired of the hassle.
Hearing this always makes me want to cry. I am disappointed that I can't make this particular hassle go away. After all, this isn't something all girls for through and must learn from: like your first bad boyfriend, or doing your three week project entirely on the night before it is due. It's not something I can guide her through in the same way I can typical life lessons with logical consequences.
I told the DNE that I had offered the option of counseling to M, but that she had adamantly refused.
It might have had something to do with the fact that I had just caught her in this self-destructive lie. She might not have been wide open to suggestions at that time.
FLASHBACK~FLASHBACK~FLASHBACK
Me: "If you don't feel comfortable talking to me or Daddy about it, maybe you'd like for us to arrange for you to talk to someone else who might be able to help you."
M: "I don't need a psychiatrist! There is nothing wrong with me!"
Me: "I know there's nothing wrong with you. Everything you are feeling is normal. But if you need to talk to someone so that you can feel better, then I am willing to come up with some way that it can happen."
M: No response, minus a silent glare.
Back in the office, the DNE made the same offer, but it went much better for her. M simply nodded and said that she would keep the option in mind.
One consequence of the whole debacle that I hadn't considered was that we would now have to visit the DNE every month until further notice. This bummed me out. Those visits are not only about $500 a pop, but they also require that I take a minimum of a half day off from work, which I do not enjoy doing.
It makes sense, however. We, as a family, have fallen off the wagon, so to speak. We need time to recover and heal before we can get the all clear.
The DNE was somewhat tactful, saying that she just wanted to make sure that M was "following along the right path" for a while.
So, with stepped up vigilance, we will continue forward. Hopefully we'll find some fantastic support for M along the way....
Diabetes camp can't come soon enough!
This was the highest it had ever been - even when she was first diagnosed.
The DNE came into the room, trying not to betray her concern when she said that M's numbers looked good, but that her A1C was a 9. M and I nodded. I said, "I can't say that I am surprised."
The DNE's eyebrows shot up, and she asked why it wasn't surprising.
To her credit, M launched into an explanation about her methods for tracking her progress over the last few weeks.
The DNE listened silently, and when M was finished explaining what she had done, she asked her when she stopped using this method.
M replied, "When my mom caught me."
As her eyebrows disappeared further into her hair, the DNE asked me how I caught M lying about her bg levels. I explained my methods, and the DNE congratulated me on my powers of observation, adding that not all parents would notice after a week or so (Big pat on the back for the "control freak" mother).
Then she asked M why she did it.
M said that she's just sick of being diabetic. She's tired of the hassle.
Hearing this always makes me want to cry. I am disappointed that I can't make this particular hassle go away. After all, this isn't something all girls for through and must learn from: like your first bad boyfriend, or doing your three week project entirely on the night before it is due. It's not something I can guide her through in the same way I can typical life lessons with logical consequences.
I told the DNE that I had offered the option of counseling to M, but that she had adamantly refused.
It might have had something to do with the fact that I had just caught her in this self-destructive lie. She might not have been wide open to suggestions at that time.
FLASHBACK~FLASHBACK~FLASHBACK
Me: "If you don't feel comfortable talking to me or Daddy about it, maybe you'd like for us to arrange for you to talk to someone else who might be able to help you."
M: "I don't need a psychiatrist! There is nothing wrong with me!"
Me: "I know there's nothing wrong with you. Everything you are feeling is normal. But if you need to talk to someone so that you can feel better, then I am willing to come up with some way that it can happen."
M: No response, minus a silent glare.
Back in the office, the DNE made the same offer, but it went much better for her. M simply nodded and said that she would keep the option in mind.
One consequence of the whole debacle that I hadn't considered was that we would now have to visit the DNE every month until further notice. This bummed me out. Those visits are not only about $500 a pop, but they also require that I take a minimum of a half day off from work, which I do not enjoy doing.
It makes sense, however. We, as a family, have fallen off the wagon, so to speak. We need time to recover and heal before we can get the all clear.
The DNE was somewhat tactful, saying that she just wanted to make sure that M was "following along the right path" for a while.
So, with stepped up vigilance, we will continue forward. Hopefully we'll find some fantastic support for M along the way....
Diabetes camp can't come soon enough!
 |
| Don't fall off! |
Monday, May 30, 2011
Pump Visit Number Six: Don't Worry, Be Happy
The day after her NYC trip, M has to go in for another pump visit.
We arrive in a timely manner this time, and our DNE looks over M's numbers.
To her, they look fine, even though they range from 45 to 389 mg/dl. The DNE speculates aloud that perhaps I don't like the feeling of losing control of M or the management of her diabetes. I am "worrying too much."
I think to myself, that once M demonstrates consistency, I will be more than happy to completely hand over responsibility for her care. As it is, she is very much in charge. I simply remind her to check her bg before going to bed, and ask her what her results are maybe three times per day, to make sure we are staying on top of any body changes. All changes we make in her dosing are discussions in which we compromise and agree on a course of action.
However, I find that when dealing with medical professionals with whom one disagrees, it is easier to let him or her think that you agree with them.
For example, when my son was an infant, he was nursed (aka breastfed) exclusively for six months. Then he moved straight to solid food. I think he ate two jars of baby food, and then started grabbing food out of my hand at dinner time.
The doctor wanted me to start him on whole milk right away, because "babies need fat." While I agree that babies need fat, it doesn't mean that a 30 pound 6 month old needs fat when he is still nursing 4-6 times per day.
Also, she said, he would need iron supplements.
I am a "good girl", a rule follower. So I tried to give our baby the iron supplements. He gagged on them, cried, and spit them out. They irreparably stained his shirts. I found the exercise to be futile, as his blood iron levels were healthy prior to my attempts to administer the supplements.
Logic, sometimes, must rule over whatever the doctor said.
I explained my objections about whole milk to the doctor. I said, "The baby's nursing 4-6 times per day, and eating a pint of Ben and Jerry's every week. I think he is getting enough fat for now. I don't enjoy drinking whole milk, so he's getting 2% like the rest of us."
The doctor grew alarmed, thinking that I was putting my son "on a diet", and cautioned against doing something so dangerous as giving him 2% milk.
Exasperated, I didn't even broach the subject of the iron supplements.
So, the next time we went in to visit the doctor, I lied.
Dr: "Is he drinking plenty of whole milk?"
Me: "Yes, he is."
Dr: "Does he like his iron supplements?"
Me: "He loves them."
See? That was easy!
Fast forward to this month, with the DNE, when she told me that I worried about M's bg levels too much, and suggested that I was some sort of control freak. I did not cite the research that I had read about those who had survived diabetes for 75 years or more. I did not say that the evidence shows that long-lived survivors all had tight control over their bg levels, exercised more often, ate more healthfully, and did not waver from 48 to 315 mg/dl in one day.
Instead I said, "Maybe I am."
She gets to be right, and I get left alone. Everybody wins.
And, of course, since I want M to be in that club of people who survive for years and years with this disease, I will continue to ask questions about her bg levels, what she ate, and how she is feeling.
After all, that's my job.
We arrive in a timely manner this time, and our DNE looks over M's numbers.
To her, they look fine, even though they range from 45 to 389 mg/dl. The DNE speculates aloud that perhaps I don't like the feeling of losing control of M or the management of her diabetes. I am "worrying too much."
I think to myself, that once M demonstrates consistency, I will be more than happy to completely hand over responsibility for her care. As it is, she is very much in charge. I simply remind her to check her bg before going to bed, and ask her what her results are maybe three times per day, to make sure we are staying on top of any body changes. All changes we make in her dosing are discussions in which we compromise and agree on a course of action.
However, I find that when dealing with medical professionals with whom one disagrees, it is easier to let him or her think that you agree with them.
For example, when my son was an infant, he was nursed (aka breastfed) exclusively for six months. Then he moved straight to solid food. I think he ate two jars of baby food, and then started grabbing food out of my hand at dinner time.
The doctor wanted me to start him on whole milk right away, because "babies need fat." While I agree that babies need fat, it doesn't mean that a 30 pound 6 month old needs fat when he is still nursing 4-6 times per day.
Also, she said, he would need iron supplements.
I am a "good girl", a rule follower. So I tried to give our baby the iron supplements. He gagged on them, cried, and spit them out. They irreparably stained his shirts. I found the exercise to be futile, as his blood iron levels were healthy prior to my attempts to administer the supplements.
Logic, sometimes, must rule over whatever the doctor said.
I explained my objections about whole milk to the doctor. I said, "The baby's nursing 4-6 times per day, and eating a pint of Ben and Jerry's every week. I think he is getting enough fat for now. I don't enjoy drinking whole milk, so he's getting 2% like the rest of us."
The doctor grew alarmed, thinking that I was putting my son "on a diet", and cautioned against doing something so dangerous as giving him 2% milk.
Exasperated, I didn't even broach the subject of the iron supplements.
So, the next time we went in to visit the doctor, I lied.
Dr: "Is he drinking plenty of whole milk?"
Me: "Yes, he is."
Dr: "Does he like his iron supplements?"
Me: "He loves them."
See? That was easy!
Fast forward to this month, with the DNE, when she told me that I worried about M's bg levels too much, and suggested that I was some sort of control freak. I did not cite the research that I had read about those who had survived diabetes for 75 years or more. I did not say that the evidence shows that long-lived survivors all had tight control over their bg levels, exercised more often, ate more healthfully, and did not waver from 48 to 315 mg/dl in one day.
Instead I said, "Maybe I am."
She gets to be right, and I get left alone. Everybody wins.
And, of course, since I want M to be in that club of people who survive for years and years with this disease, I will continue to ask questions about her bg levels, what she ate, and how she is feeling.
After all, that's my job.
 |
| wooo, hoo, hoo, hoo, hoo, hoowooooh-ooh, oohoohooh... |
Friday, May 20, 2011
Lacrosse and diabetes
So this has been interesting.
As I may have mentioned, M is an athlete. This season she is playing her favorite sport of all time, lacrosse.
Now, as you can likely imagine, running around is a big part of lacrosse, as is whacking sticks and scooping balls off of the ground. It can get a little rough.
So of course M loves it.
The first day of lacrosse practice this season, M opted to wear her pump as well as a purple hair extension that I had to comb into her ponytail, just so everyone could see. I think it was her way of announcing to her new teammates that M is here.
During practice, M learned how to manage having the pump clipped to her shorts or sweats, and experienced no problems. She did have lower bgs than normal, but we knew that was how her body worked after rigorous exercise.
M answered the obligatory questions about the pump from the other girls, and accepted compliments about her hair with grace. She began to get to know people.
After a month or so, along comes the first game. M is playing defense. She is running, blocking, stretching that stick so that nobody can get to the goal.
Then there is a moment of confusion on the field. A time out is called, and M comes running over to me holding the purple device in her hand, infusion set dangling from it.
She hands it to me, saying "I'll deal with this later," and runs back into the field.
I look at the device, decide that it is okay that she is not wearing it- considering her bg generally drops during athletic events- and watch the game.
Don't get me wrong. I am a little annoyed that it has pulled out of her body for the second time in a week. At the same time, I know we will have to figure this out: where to place it on her body, when to disconnect it, etc.
After a few minutes of watching the game, there is a startlingly loud vibrating sound on the bench next to me. It is the pump, much like a cell phone on vibrate, asking for attention.
I dutifully pick it up, look at it, and set it down. I am annoyed with the pump for taking my attention away from my amazing child as she races around the field. Looking at a purple box is not nearly as fun as watching your kid kick butt at a lacrosse game, is it? However, I am fascinated by this new noise.
Evidently, the pump is programmed to do this every fifteen minutes. It is one of those safety features that prevents people from not getting their insulin. It says, "Hey, dummy! I'm not pumping any insulin into you! You wanna do something about that?"
Fortunately, unlike baseball or horse shows, lacrosse is not a long game, so I only have to hear the angry buzz of the pump three more times.
After the game, we jump in the car, check the all-important bg (which is 85mg/dl) and decide to leave the pump off until M showers.
That was just easier.
From now on, the pump is disconnected during a game!
As I may have mentioned, M is an athlete. This season she is playing her favorite sport of all time, lacrosse.
Now, as you can likely imagine, running around is a big part of lacrosse, as is whacking sticks and scooping balls off of the ground. It can get a little rough.
So of course M loves it.
The first day of lacrosse practice this season, M opted to wear her pump as well as a purple hair extension that I had to comb into her ponytail, just so everyone could see. I think it was her way of announcing to her new teammates that M is here.
During practice, M learned how to manage having the pump clipped to her shorts or sweats, and experienced no problems. She did have lower bgs than normal, but we knew that was how her body worked after rigorous exercise.
M answered the obligatory questions about the pump from the other girls, and accepted compliments about her hair with grace. She began to get to know people.
After a month or so, along comes the first game. M is playing defense. She is running, blocking, stretching that stick so that nobody can get to the goal.
Then there is a moment of confusion on the field. A time out is called, and M comes running over to me holding the purple device in her hand, infusion set dangling from it.
She hands it to me, saying "I'll deal with this later," and runs back into the field.
I look at the device, decide that it is okay that she is not wearing it- considering her bg generally drops during athletic events- and watch the game.
Don't get me wrong. I am a little annoyed that it has pulled out of her body for the second time in a week. At the same time, I know we will have to figure this out: where to place it on her body, when to disconnect it, etc.
After a few minutes of watching the game, there is a startlingly loud vibrating sound on the bench next to me. It is the pump, much like a cell phone on vibrate, asking for attention.
I dutifully pick it up, look at it, and set it down. I am annoyed with the pump for taking my attention away from my amazing child as she races around the field. Looking at a purple box is not nearly as fun as watching your kid kick butt at a lacrosse game, is it? However, I am fascinated by this new noise.
Evidently, the pump is programmed to do this every fifteen minutes. It is one of those safety features that prevents people from not getting their insulin. It says, "Hey, dummy! I'm not pumping any insulin into you! You wanna do something about that?"
Fortunately, unlike baseball or horse shows, lacrosse is not a long game, so I only have to hear the angry buzz of the pump three more times.
After the game, we jump in the car, check the all-important bg (which is 85mg/dl) and decide to leave the pump off until M showers.
That was just easier.
From now on, the pump is disconnected during a game!
 |
| Knock the ball out! Woohoo! |
Wednesday, May 4, 2011
Sleeping through the night
After Pump Visit Number Five, I felt a bit better. I now knew that this adjustment process was normal-ish.
No one had warned me that the transition from one method of diabetes management to another would be so challenging. The closest thing I got was, "It's not a panacea," which I knew.
M loves the pump. It's only I that had concerns. I had done my research. I had been reluctant to switch M to the pump, but after talking to parents, students, and medical professionals, I had decided that the switch would be healthier for M.
I usually ask good questions, but I never thought to ask if switching to the pump would be stressful and unpredictable. I figured that someone might tell me that. It took my friend the audiologist to tell me that adjusting to a new medical device is ALWAYS a challenge. But this was after my angry rant about the pump was posted on this here blog.
I seem in control to most people. When I am displeased, I say all of the appropriate things to the appropriate people. My polite words, however, cannot hide my facial expressions. Anyone who knows me knows that I am possibly the worst liar on the planet.
At visit number five, Dr. asked M how she was liking the pump. M said she loved it, but her mom didn't. When M told Dr. that I wasn't thrilled with the pump, I tried to look like I wasn't that displeased. I could handle this bump in the road! I have a can-do attitude! Look at me, I am a capable woman! I gave a grin to Dr.
Dr. took one look at me and advised me to sleep through the night.
I guess I won't be winning any Oscars any time soon.
How can I sleep through the night? I had been told to check M's bg every three hours. Her numbers were still "out of range".
Dr. said, "It's been a long time since her numbers have been low. I think you can go through the night without checking her bg."
"But it has been high. I just want to do things right," I said.
She looked at me and said, "It's okay if she goes a little high at night."
I looked at her, a little bewildered. "You're telling me that it's okay if she goes high at night."
"Yes."
"So, don't worry about the highs."
"Don't worry about the highs."
To me this sounded like being a bad parent. So I opted instead to check her bg once in the middle of the night to see how she was doing. I felt like not taking a peek in the middle of the night might be irresponsible.
I checked her two nights in a row at 2:00 am. Her bg was 198 on night number one. It was 148 on night number two. They were between 120 and 178 in the morning. That wasn't so bad, all things considered.
So last night I slept through the night. From 10:00 pm to 5:00 am, I slept.
And guess what? We all survived.
Maybe now my students won't have to suffer next week. Maybe.
No one had warned me that the transition from one method of diabetes management to another would be so challenging. The closest thing I got was, "It's not a panacea," which I knew.
M loves the pump. It's only I that had concerns. I had done my research. I had been reluctant to switch M to the pump, but after talking to parents, students, and medical professionals, I had decided that the switch would be healthier for M.
I usually ask good questions, but I never thought to ask if switching to the pump would be stressful and unpredictable. I figured that someone might tell me that. It took my friend the audiologist to tell me that adjusting to a new medical device is ALWAYS a challenge. But this was after my angry rant about the pump was posted on this here blog.
I seem in control to most people. When I am displeased, I say all of the appropriate things to the appropriate people. My polite words, however, cannot hide my facial expressions. Anyone who knows me knows that I am possibly the worst liar on the planet.
At visit number five, Dr. asked M how she was liking the pump. M said she loved it, but her mom didn't. When M told Dr. that I wasn't thrilled with the pump, I tried to look like I wasn't that displeased. I could handle this bump in the road! I have a can-do attitude! Look at me, I am a capable woman! I gave a grin to Dr.
Dr. took one look at me and advised me to sleep through the night.
I guess I won't be winning any Oscars any time soon.
How can I sleep through the night? I had been told to check M's bg every three hours. Her numbers were still "out of range".
Dr. said, "It's been a long time since her numbers have been low. I think you can go through the night without checking her bg."
"But it has been high. I just want to do things right," I said.
She looked at me and said, "It's okay if she goes a little high at night."
I looked at her, a little bewildered. "You're telling me that it's okay if she goes high at night."
"Yes."
"So, don't worry about the highs."
"Don't worry about the highs."
To me this sounded like being a bad parent. So I opted instead to check her bg once in the middle of the night to see how she was doing. I felt like not taking a peek in the middle of the night might be irresponsible.
I checked her two nights in a row at 2:00 am. Her bg was 198 on night number one. It was 148 on night number two. They were between 120 and 178 in the morning. That wasn't so bad, all things considered.
So last night I slept through the night. From 10:00 pm to 5:00 am, I slept.
And guess what? We all survived.
Maybe now my students won't have to suffer next week. Maybe.
 | |
| Don't mess with me, buddy. I'm on two hours sleep! |
Saturday, April 30, 2011
Pump Visit Number Five: Mysteries solved
Have I mentioned that driving in and around Boston is a bit problematic?
That is, the traffic is unpredictable, with swings in perception and mood that cannot be foreseen. As a result, M and I routinely leave 2 hours ahead of our scheduled appointment. Sometimes the journey takes one hour and a quarter from my place of work. More typically it takes about an hour and a half.
Today it took two hours and twenty minutes.
We were ten minutes late.
We had been repeatedly warned that being late for an appointment can result in having to reschedule it, so I was panicked. I don't have time for this again in the near future.
Fortunately, the dire warnings must allow for some traffic-related flexibility. Everyone in the office was telling me not to worry about it.
I was probably still in my traffic-induced anxiety when we were ushered in to see Dr.
Firstly, I want to say that Dr. looks great now that her braces are off.
She also looks really fat in the middle, as if carrying a basketball under her shirt. Apparently this will be child number three for her.
Before M goes in to see the doctor, she typically hands over her bg meter to the nurse, who then gathers information from it via some really cool computer thing. This time, the nurse collected M's insulin pump from her, and apparently gathered a multitude of information from it, printed out the information, and handed it over to Dr. Dr. looked at the printout of M's readings from her insulin pump.
The good news was that M's A1C was 6.3, the lowest it had ever been. Again, great news, except that it might be due to the many, many episodes of low bg that occurred over the last two weeks.
I expressed my frustration at the insane variation of numbers and lack of control I felt. I began to tear up as I explained how tired I was, how concerned I was that her numbers were dangerously all over the place, and how I am not finding the pump to be any better than the basal-bolus system with Lantus and Humalog.
I told her that I need logic, and while I am trying to make sense of how these numbers can go from one extreme to another, I am growing frustrated, because I can't make heads or tails of it.
Dr. listened and nodded as she looked over M's printout. She was silent, biting her lip as she tried to make sense of the numbers she was seeing.
Then she dropped the bomb.
"M. I think that it is clear that your numbers are higher when you eat a large number of carbs. For example, here, on Sunday (Easter Sunday), you ate 527 carbs in one day." (!!!)
M tried to say that she couldn't have, but Dr. politely stopped her protests. "I see here that you covered for every carb you ate, and that's great. I am really glad you are doing that, but it might be a good idea for you to visit with Karen, our dietician."
She looked at the printout again, and cited other days with high carb amounts (over 200 in a day). She looked at me meaningfully as she explained that M really should try to keep her carb count below 170 per day.
While Dr. was looking at me, I was looking at M with the same meaningful gaze. M and I had had this conversation before. Many times. She typically glared, got angry, got defensive, covered her tracks, and sneaked food. Thank God she always covered for her food with insulin, but I knew she wasn't always telling me the truth when she told me what she ate.
Now we have proof.
M can't hide from the numbers. Because of the pump, which tracks everything for which she boluses, what her bg is, and how much insulin she takes, we can now have a real, honest conversation about managing her diet, and therefore her diabetes.
But she won't like it.
When we first started on this diabetic adventure, M and I were a team. We were going to show diabetes who was boss! And we did. We counted carbs with precision, logged exercise and insulin doses into a cute little book, and learned how to fill her up with low-carb snacks.
But it got old for M. After all, it's not an adventure. It's a hassle having a life-threatening illness. Two years is a long time to keep up one's adventuresome spirit about managing something that you are stuck with for life. There is only so much sugar-free jello one can eat.
Because I am a mom, however, it will never get old for me. I will continue to remind, suggest, and advise (nag, from M's point of view), because I understand the consequences if I don't.
This is where worlds collide.
So yes, we will make our appointment with Karen. It might be good for M to hear the same information from another source besides her annoying mother. And Dr., you might want to start addressing this information to the perfectly capable 13-year-old.
It is she who is ultimately responsible for what goes in her mouth.
That is, the traffic is unpredictable, with swings in perception and mood that cannot be foreseen. As a result, M and I routinely leave 2 hours ahead of our scheduled appointment. Sometimes the journey takes one hour and a quarter from my place of work. More typically it takes about an hour and a half.
Today it took two hours and twenty minutes.
We were ten minutes late.
We had been repeatedly warned that being late for an appointment can result in having to reschedule it, so I was panicked. I don't have time for this again in the near future.
Fortunately, the dire warnings must allow for some traffic-related flexibility. Everyone in the office was telling me not to worry about it.
I was probably still in my traffic-induced anxiety when we were ushered in to see Dr.
Firstly, I want to say that Dr. looks great now that her braces are off.
She also looks really fat in the middle, as if carrying a basketball under her shirt. Apparently this will be child number three for her.
Before M goes in to see the doctor, she typically hands over her bg meter to the nurse, who then gathers information from it via some really cool computer thing. This time, the nurse collected M's insulin pump from her, and apparently gathered a multitude of information from it, printed out the information, and handed it over to Dr. Dr. looked at the printout of M's readings from her insulin pump.
The good news was that M's A1C was 6.3, the lowest it had ever been. Again, great news, except that it might be due to the many, many episodes of low bg that occurred over the last two weeks.
I expressed my frustration at the insane variation of numbers and lack of control I felt. I began to tear up as I explained how tired I was, how concerned I was that her numbers were dangerously all over the place, and how I am not finding the pump to be any better than the basal-bolus system with Lantus and Humalog.
I told her that I need logic, and while I am trying to make sense of how these numbers can go from one extreme to another, I am growing frustrated, because I can't make heads or tails of it.
Dr. listened and nodded as she looked over M's printout. She was silent, biting her lip as she tried to make sense of the numbers she was seeing.
Then she dropped the bomb.
"M. I think that it is clear that your numbers are higher when you eat a large number of carbs. For example, here, on Sunday (Easter Sunday), you ate 527 carbs in one day." (!!!)
M tried to say that she couldn't have, but Dr. politely stopped her protests. "I see here that you covered for every carb you ate, and that's great. I am really glad you are doing that, but it might be a good idea for you to visit with Karen, our dietician."
She looked at the printout again, and cited other days with high carb amounts (over 200 in a day). She looked at me meaningfully as she explained that M really should try to keep her carb count below 170 per day.
While Dr. was looking at me, I was looking at M with the same meaningful gaze. M and I had had this conversation before. Many times. She typically glared, got angry, got defensive, covered her tracks, and sneaked food. Thank God she always covered for her food with insulin, but I knew she wasn't always telling me the truth when she told me what she ate.
Now we have proof.
M can't hide from the numbers. Because of the pump, which tracks everything for which she boluses, what her bg is, and how much insulin she takes, we can now have a real, honest conversation about managing her diet, and therefore her diabetes.
But she won't like it.
When we first started on this diabetic adventure, M and I were a team. We were going to show diabetes who was boss! And we did. We counted carbs with precision, logged exercise and insulin doses into a cute little book, and learned how to fill her up with low-carb snacks.
But it got old for M. After all, it's not an adventure. It's a hassle having a life-threatening illness. Two years is a long time to keep up one's adventuresome spirit about managing something that you are stuck with for life. There is only so much sugar-free jello one can eat.
Because I am a mom, however, it will never get old for me. I will continue to remind, suggest, and advise (nag, from M's point of view), because I understand the consequences if I don't.
This is where worlds collide.
So yes, we will make our appointment with Karen. It might be good for M to hear the same information from another source besides her annoying mother. And Dr., you might want to start addressing this information to the perfectly capable 13-year-old.
It is she who is ultimately responsible for what goes in her mouth.
 |
| Choose your poison. |
Thursday, April 28, 2011
Bumps along the road
This pump is not doing what it promised.
Just look at all of those happy, carefree people on the brochure, literally jumping for joy. "Just look how simple living with diabetes will be! Look at all of the freedom you will have! Welcome to your new life!"
Bullshit.
It has been two weeks since M started on insulin with the pump. The first third of this time period was fraught with dangerous lows. M's bg level was generally in the 40s and 50s. Sometimes it dropped to the 30s, which left me in the bizarre position of force-feeding her carbs at all kinds of hours throughout the day and night.
We adjusted her basal rate. We lowered it so that she was receiving fewer units of Humalog per hour. 1.35 to 1.25 to 1.15, to 1.1 at night, and 1.15 during the day.
Then it happened. Two days where nearly every test came back with a bg in range. 108, 99, 112, 128, 89.
Yes! We found the magic numbers.
After the two days though, her bg began to spike 348, 398, 378.... What the hell?
We looked at her new infusion site. She had just changed it to the front of her thigh, where some folks had told her she might be more comfortable. Everything was connected. She gave herself bolus after bolus with no visible result. Her blood sugar wasn't going up, at least. We checked, but there was no leak in the tubing.
I thought that maybe the cannula was kinked, delivering some of the insulin, but not all. We decided to switch her infusion site. M took an injection of Humalog using her insulin pen. In an hour her bg was 118.
Phew!
M chose to put the new infusion set on the back of her arm so that her belly could get a rest.
Later that day, she ripped it out while doing some yard work.
Ugh.
Insurance only covers one new infusion set for every three days. Now we will have gone through three in one day.
Super.
M put a new infusion set in the back of her arm. Things are better, but we are still readjusting her basal rates back up. Right now, we have her at 1.35 during the day, and 1.15 at night. Her bg is still in the 200s for the most part.
I am sure that not sleeping through the night isn't helping, but this pump is making me mad.
Evidently, I had some unrealistic expectation that perhaps M's insulin doses would start making sense to me. That maybe we would have better control of her bg.
Right now the control has seemed worse.
I am also sure that it's not the pump's fault. I am sure that I am doing something wrong. Or maybe I am not patient enough.
All I know is that we haven't even paid for the damned thing, and I am ready to send it back.
I am waiting for M to look like those happy people on the cover of the package that we were given, instead of bewildered about her bg levels.
It can't happen fast enough.
Just look at all of those happy, carefree people on the brochure, literally jumping for joy. "Just look how simple living with diabetes will be! Look at all of the freedom you will have! Welcome to your new life!"
Bullshit.
It has been two weeks since M started on insulin with the pump. The first third of this time period was fraught with dangerous lows. M's bg level was generally in the 40s and 50s. Sometimes it dropped to the 30s, which left me in the bizarre position of force-feeding her carbs at all kinds of hours throughout the day and night.
We adjusted her basal rate. We lowered it so that she was receiving fewer units of Humalog per hour. 1.35 to 1.25 to 1.15, to 1.1 at night, and 1.15 during the day.
Then it happened. Two days where nearly every test came back with a bg in range. 108, 99, 112, 128, 89.
Yes! We found the magic numbers.
After the two days though, her bg began to spike 348, 398, 378.... What the hell?
We looked at her new infusion site. She had just changed it to the front of her thigh, where some folks had told her she might be more comfortable. Everything was connected. She gave herself bolus after bolus with no visible result. Her blood sugar wasn't going up, at least. We checked, but there was no leak in the tubing.
I thought that maybe the cannula was kinked, delivering some of the insulin, but not all. We decided to switch her infusion site. M took an injection of Humalog using her insulin pen. In an hour her bg was 118.
Phew!
M chose to put the new infusion set on the back of her arm so that her belly could get a rest.
Later that day, she ripped it out while doing some yard work.
Ugh.
Insurance only covers one new infusion set for every three days. Now we will have gone through three in one day.
Super.
M put a new infusion set in the back of her arm. Things are better, but we are still readjusting her basal rates back up. Right now, we have her at 1.35 during the day, and 1.15 at night. Her bg is still in the 200s for the most part.
I am sure that not sleeping through the night isn't helping, but this pump is making me mad.
Evidently, I had some unrealistic expectation that perhaps M's insulin doses would start making sense to me. That maybe we would have better control of her bg.
Right now the control has seemed worse.
I am also sure that it's not the pump's fault. I am sure that I am doing something wrong. Or maybe I am not patient enough.
All I know is that we haven't even paid for the damned thing, and I am ready to send it back.
I am waiting for M to look like those happy people on the cover of the package that we were given, instead of bewildered about her bg levels.
It can't happen fast enough.
 |
| Bewildered parent and/or diabetic child. |
Friday, April 22, 2011
Midnight to three
This whole checking M's bg throughout the night is not fun. I chose to have kids young so that I wouldn't have to suffer the inconvenience of having my sleep disturbed at this age. We older folks need our sleep, man!
In fact, I am one of those cruel friends who mocks those who are cranking out babies in their forties. "Ha ha! I've got one out of the house already! You're going to be sixty before that happens, and I'll be kid-free, sleeping in on Saturdays, and going out without having to worry about where the kids are! Nanny, nanny, boo-boo!"
My kind-hearted friends never say, "Well, ha ha! Your kid has diabetes, and parenting is a lot more complicated for you than it is for us!"
Then again, maybe they don't say that because they sense it's not true. Parenting is complicated no matter what.
Regardless, my sleep is being disturbed.
But it is essential.
On the day M started "live" on the pump, she was given a basal rate of 1.35 units per hour of Humalog to start. After checking her bg throughout the night, and having it consistently below target range (55 mg/dl and 68), our DNE decided to lower her rate to 1.25 units.
We decided to keep it that rate through the weekend, but I suspect we will lower it again, at least at night. Her bg is in the 50s nearly 100% of the time. Which means that I am feeding her small amounts of fast-acting carbs in the middle of the night. Which is a little weird, but is better than her passing out.
She has never lost consciousness due to her diabetes - a record I intend to keep.
The first night was hard. I couldn't sleep after the midnight check. We didn't prepare well. The meter was downstairs, so after waking M, at 12:00 am, I had to go retrieve it.
Her bg was low, so I had to go back downstairs to the fridge to find some quick carbs. I settled on grapes, since M's mouth still hurt from recent adjustment of her braces. I had to wash them and bring them upstairs.
M didn't really wake up through the whole process. She kept telling me that she didn't need to eat, because she was fine. I sat and watched her eat the grapes, recorded the information on a form, and went back to bed, where I did not sleep.
The alarm then went off at 3:00 am, and I stumbled back upstairs, where the meter was still sitting. Bg was still low this time, so another handful of grapes from the kitchen, and we were all set.
I flopped back into bed, where I fell asleep pretty quickly, only to have the alarm go off at 5:30 am so I could go to work.
Let's be forgiving of the tired teacher by saying that my students "suffered a little" due to my lack of sleep.
Fortunately, each night since has gotten better. We have been laying things out before going to bed. And because it is becoming a routine, I am sleeping solidly between checks.
So, evidently, I am pretty adaptable. Maybe I could have had my kids later in life. But then I couldn't mock my friends.
And after all, what are friends for?
In fact, I am one of those cruel friends who mocks those who are cranking out babies in their forties. "Ha ha! I've got one out of the house already! You're going to be sixty before that happens, and I'll be kid-free, sleeping in on Saturdays, and going out without having to worry about where the kids are! Nanny, nanny, boo-boo!"
My kind-hearted friends never say, "Well, ha ha! Your kid has diabetes, and parenting is a lot more complicated for you than it is for us!"
Then again, maybe they don't say that because they sense it's not true. Parenting is complicated no matter what.
Regardless, my sleep is being disturbed.
But it is essential.
On the day M started "live" on the pump, she was given a basal rate of 1.35 units per hour of Humalog to start. After checking her bg throughout the night, and having it consistently below target range (55 mg/dl and 68), our DNE decided to lower her rate to 1.25 units.
We decided to keep it that rate through the weekend, but I suspect we will lower it again, at least at night. Her bg is in the 50s nearly 100% of the time. Which means that I am feeding her small amounts of fast-acting carbs in the middle of the night. Which is a little weird, but is better than her passing out.
She has never lost consciousness due to her diabetes - a record I intend to keep.
The first night was hard. I couldn't sleep after the midnight check. We didn't prepare well. The meter was downstairs, so after waking M, at 12:00 am, I had to go retrieve it.
Her bg was low, so I had to go back downstairs to the fridge to find some quick carbs. I settled on grapes, since M's mouth still hurt from recent adjustment of her braces. I had to wash them and bring them upstairs.
M didn't really wake up through the whole process. She kept telling me that she didn't need to eat, because she was fine. I sat and watched her eat the grapes, recorded the information on a form, and went back to bed, where I did not sleep.
The alarm then went off at 3:00 am, and I stumbled back upstairs, where the meter was still sitting. Bg was still low this time, so another handful of grapes from the kitchen, and we were all set.
I flopped back into bed, where I fell asleep pretty quickly, only to have the alarm go off at 5:30 am so I could go to work.
Let's be forgiving of the tired teacher by saying that my students "suffered a little" due to my lack of sleep.
Fortunately, each night since has gotten better. We have been laying things out before going to bed. And because it is becoming a routine, I am sleeping solidly between checks.
So, evidently, I am pretty adaptable. Maybe I could have had my kids later in life. But then I couldn't mock my friends.
And after all, what are friends for?
Tuesday, April 19, 2011
Pump Visit Number Four: LIVE
We are home now, after a long drive to and from Children's Hospital.
When we scheduled M's insulin pump appointment, we were informed that it was a very special appointment that could only be made on Wednesdays at 8:00 am. This means leaving the house at 6:00 am, but M thinks that it is worth it.
We receive a phone call two days before the appointment that assumes we are slightly less than "all there". We are told to bring a list of items that a diabetic would typically find elementary. While I understand that the nurses at the hospital often have to deal with inept people, I find the list mildly insulting.
Bring:
1) insulin (mentioned twice)
2) the pump (!)
3) an infusion set
4) a reservoir
5) the bg meter
6) a bottle of chardonnay (I am just kidding about that one)
The night before the appointment, we gather all of the needed supplies into a JDRF backpack, and go to bed a little early.
The drive to Children's was trafficky and long, due to a lot of rain, but we arrived safely and on time.
The visit itself was a piece of cake. The DNE reviewed everything that the pump rep had told us last week. May played with more screens, and created her settings for trial and error with the pump.
One interesting fact. She had taken her Lantus the night before. Being that it is a long-lasting insulin, it was still in her system. So how do we make sure that she doesn't get a double dose of insulin? After all, the pump is supposed to feed M a basal rate of 1.35 units per hour. Wouldn't that make her dangerously low?
We learn to set the pump for a temporary basal rate of 0 units per hour for the next 12 hours. Then we start her on her new basal rate tonight.
Sleepless nights are coming again. M has to check her bg at midnight and 3:00 am. Which means I have to get up and check M's bg at midnight and 3:00 am. She will also need to check it before eating, and two hours after eating for the next week or two. Lots of finger sticking, but all for a good cause.
M felt good leaving the office. We began the long, rainy drive back home. Then M got hungry. We stopped at the healthiest place nearby: a Hess station. I got gas for the car, and raided their ice cream selection. I needed something relatively soft. Not only does M have diabetes, but she also has braces. Which were adjusted yesterday. So her mouth hurt.
Ice cream sandwich: 43 carbs. No. Ben and Jerry's single serve: 29 carbs. Much better.
M smiles as she receives her tiny little gift, with a tiny little spoon in the lid.
Then it hits me. She only has to enter the number 29 into her pump, and BOOM, it's all calculated and dosed. Her first pump-injected insulin is coursing through her system.
This might make life a little easier after all.
When we scheduled M's insulin pump appointment, we were informed that it was a very special appointment that could only be made on Wednesdays at 8:00 am. This means leaving the house at 6:00 am, but M thinks that it is worth it.
We receive a phone call two days before the appointment that assumes we are slightly less than "all there". We are told to bring a list of items that a diabetic would typically find elementary. While I understand that the nurses at the hospital often have to deal with inept people, I find the list mildly insulting.
Bring:
1) insulin (mentioned twice)
2) the pump (!)
3) an infusion set
4) a reservoir
5) the bg meter
6) a bottle of chardonnay (I am just kidding about that one)
The night before the appointment, we gather all of the needed supplies into a JDRF backpack, and go to bed a little early.
The drive to Children's was trafficky and long, due to a lot of rain, but we arrived safely and on time.
The visit itself was a piece of cake. The DNE reviewed everything that the pump rep had told us last week. May played with more screens, and created her settings for trial and error with the pump.
One interesting fact. She had taken her Lantus the night before. Being that it is a long-lasting insulin, it was still in her system. So how do we make sure that she doesn't get a double dose of insulin? After all, the pump is supposed to feed M a basal rate of 1.35 units per hour. Wouldn't that make her dangerously low?
We learn to set the pump for a temporary basal rate of 0 units per hour for the next 12 hours. Then we start her on her new basal rate tonight.
Sleepless nights are coming again. M has to check her bg at midnight and 3:00 am. Which means I have to get up and check M's bg at midnight and 3:00 am. She will also need to check it before eating, and two hours after eating for the next week or two. Lots of finger sticking, but all for a good cause.
M felt good leaving the office. We began the long, rainy drive back home. Then M got hungry. We stopped at the healthiest place nearby: a Hess station. I got gas for the car, and raided their ice cream selection. I needed something relatively soft. Not only does M have diabetes, but she also has braces. Which were adjusted yesterday. So her mouth hurt.
Ice cream sandwich: 43 carbs. No. Ben and Jerry's single serve: 29 carbs. Much better.
M smiles as she receives her tiny little gift, with a tiny little spoon in the lid.
Then it hits me. She only has to enter the number 29 into her pump, and BOOM, it's all calculated and dosed. Her first pump-injected insulin is coursing through her system.
This might make life a little easier after all.
 |
| Are we live? YEAH! |
Wednesday, April 13, 2011
Pump Visit Number Three: Noisy Tamagotchi
I am not sure how much this episode can be considered a pump visit, but since it involves further education regarding the insulin pump, I decided that it counts.
We have a pump educator come to us to start M on saline.
The pump educator works for the pump company, and tells us that we will want to go to see the DNE in about a week to see how we are doing, and hopefully to get M on the pump "live". In the meantime, where do we live so that she can come to our home to train us and get M started?
We live nowhere near anything.
I ask the nice representative where she is coming from. It is nearly one and a half hours from my home, but a mere 45 minutes from where I work. I ask her if she would like to meet us around 3:00 pm at M's school. I assume that this will be okay with the administrator.
The representative agrees, and the appointment is set for a couple of days away.
We all arrive at the school and set up at a round table in the administrative area of the building. M has brought her infusion set, her reservoir, her bg meter, test strips, and, of course, the pump itself, all stocked up with fresh batteries.
We go through diabetes 101 again, and then the pump rep shows M all of the cool safety features, many of which I had read about.
I think that the pump sounds like a really expensive Tamagotchi. If you don't do something to it on a regular basis, it starts beeping at you. Don't touch it for twelve hours, and an alarm sounds, because it thinks you are in a coma and you need someone to help you.
After all of that, M uses the reservoir to draw out the saline from the vial that the rep gives her. Then she makes sure that the little screw that pushes the insulin out of the reservoir is rewound to the start position. M attaches the infusion set to the reservoir, and the rep realizes that she is our of alcohol swabs.
"They were recalled this week, and I forgot to put new ones in my bag."
Recalled alcohol swabs? Really? I guess the medical profession can't be too careful in our litigious society!
M pokes the infusion set into her body, and she's good to go.
Throughout the training, various people stop to sit and watch, or stand and ask questions. These people include teachers, the principal, and students. Everyone wants to know how M's new toy works, and how it will make her life easier.
M and I found this behavior perfectly normal. Supportive, even. The pump rep had to be put at ease. "Don't worry," I tell her, "This is like our family here." I realized that she may have been concerned about HIPAA, but in reality, these people need to know what all this stuff is on M's body, and what to expect.
So, with a quick quiz at the end of out one and a half hour visit, M is using the pump to calculate carbs, do phantom boluses, and pretend to cover bg highs. All using the miracle of saline.
In another week, she will be using the pump without a net.
We have a pump educator come to us to start M on saline.
The pump educator works for the pump company, and tells us that we will want to go to see the DNE in about a week to see how we are doing, and hopefully to get M on the pump "live". In the meantime, where do we live so that she can come to our home to train us and get M started?
We live nowhere near anything.
I ask the nice representative where she is coming from. It is nearly one and a half hours from my home, but a mere 45 minutes from where I work. I ask her if she would like to meet us around 3:00 pm at M's school. I assume that this will be okay with the administrator.
The representative agrees, and the appointment is set for a couple of days away.
We all arrive at the school and set up at a round table in the administrative area of the building. M has brought her infusion set, her reservoir, her bg meter, test strips, and, of course, the pump itself, all stocked up with fresh batteries.
We go through diabetes 101 again, and then the pump rep shows M all of the cool safety features, many of which I had read about.
I think that the pump sounds like a really expensive Tamagotchi. If you don't do something to it on a regular basis, it starts beeping at you. Don't touch it for twelve hours, and an alarm sounds, because it thinks you are in a coma and you need someone to help you.
After all of that, M uses the reservoir to draw out the saline from the vial that the rep gives her. Then she makes sure that the little screw that pushes the insulin out of the reservoir is rewound to the start position. M attaches the infusion set to the reservoir, and the rep realizes that she is our of alcohol swabs.
"They were recalled this week, and I forgot to put new ones in my bag."
Recalled alcohol swabs? Really? I guess the medical profession can't be too careful in our litigious society!
M pokes the infusion set into her body, and she's good to go.
Throughout the training, various people stop to sit and watch, or stand and ask questions. These people include teachers, the principal, and students. Everyone wants to know how M's new toy works, and how it will make her life easier.
M and I found this behavior perfectly normal. Supportive, even. The pump rep had to be put at ease. "Don't worry," I tell her, "This is like our family here." I realized that she may have been concerned about HIPAA, but in reality, these people need to know what all this stuff is on M's body, and what to expect.
So, with a quick quiz at the end of out one and a half hour visit, M is using the pump to calculate carbs, do phantom boluses, and pretend to cover bg highs. All using the miracle of saline.
In another week, she will be using the pump without a net.
 |
| At least the batteries for the pump are easier to find than the batteries for this little fella! |
Sunday, April 10, 2011
The Pump arrives
The pump has arrived!
Since such an expensive piece of equipment requires a signature upon delivery, we opted to have it delivered to M's school. One can never predict when one will be home, but the owners of M's school not only own it, but also occupy the upstairs. Someone is nearly always there.
I received the phone call from Wanda, the school's director, letting me know that the pump has arrived, and that I can pick it up at my convenience.
My husband Bill and I take a drive to the school to pick up the pump. I bribe him to come along by telling him that we can look at motorcycles - an annual spring ritual that sometimes ends up with us actually buying a motorcycle. Being a good husband and father, Bill has sold his last motorcycle when M was diagnosed, so that we could pay her medical bills. The previous one he sold so that we could pay Big Brother's tuition. It's probably about time to get another one.
Bill agrees, and we take the half hour drive to the school to pick up the pump. We nervously leave it in the car while we browse the motorcycle selection. We look at stupid bikes, ugly bikes, and nice bikes. Then we leave so that M can view her new pump.
When she climbs into the car and sees the box, she makes little happy squirrel noises. She wants to rip the box open right then, but we ask her to wait until we get home.
We tear open the box immediately.
Inside is the pump ( a Medtronic Revel), a lot of manuals, a HIPAA policy, four boxes of infusion sets, four boxes of reservoirs, four AAA batteries, a One Touch Ultra Link glucose monitor, and a USB stick.
I had been told by the area rep for the pump company that M would be okay if she wanted to start pressing buttons on the pump. She wouldn't hurt it.
She pulled it out and pressed buttons, while I showed my parents what the infusion sets looked like. They had been reading up, and understood how they worked. I didn't have to explain that the infusion set is not surgically implanted.
Then I pulled out the reservoirs. All of this equipment looked pretty confusing. I figured I would have to read all of the literature that came in the box before I understand it all.
The first booklet of literature was called "The Basics of Insulin Pump Therapy". I read through it. There was no news in there. Check bg a bunch. You will still have to take injections once in a while. Bg is affected by diet and exercise. Basal is the constant insulin, bolus is the insulin you take to cover food that enters your body or to cover a spike in bg. Lows are caused by insulin. This was diabetes 101.
I figured I would learn more in the next booklet, "A Step-By-Step Guide to the Minimed Paradigm REAL-Time Insulin Pump." On page four, I found a diagram of the pump and all its parts and functions.
This helped a lot.
Now I understood what all this other stuff did.
Evidently, we were going to go back to purchasing vials of Humalog, instead of the cartridges that we had been buying for M's super cool insulin pen. The reservoir has a little plunger on it that sucks the insulin out of the vial for easy storage in the pump. According to the information in the booklet, the reservoir should hold about two or three days worth of insulin.
The screens and buttons on the pump can be locked or protected.
There is an airport card that can be given at airport security so that you don't have to remove your pump when you go through screening.
The bg meter will communicate with the pump, which will help it to calculate which dose you should give yourself, but will not administer the insulin until you tell it to.
Cold insulin tends to form air bubbles in the reservoir and the tubing, so it is better to fill your reservoir with insulin that is at room temperature.
There are "alarms" on the pump for empty reservoir, weak battery, failed battery test, and no delivery.
There are "alerts" for low battery and low reservoir.
M has been playing with the buttons. She has put the correct time and date on her meter. She has been wearing it, even though it is not attached to her body yet. She can't wait to show it off.
Now we wait for the trainer to call us to schedule M's "saline start", her week long practice with the pump using saline ( "It's like salt water" she told her grandparents.)
I can hardly wait to learn more about diabetes management with the pump: something I never thought I would have to know, nor did I intend to know anything about.
Since such an expensive piece of equipment requires a signature upon delivery, we opted to have it delivered to M's school. One can never predict when one will be home, but the owners of M's school not only own it, but also occupy the upstairs. Someone is nearly always there.
I received the phone call from Wanda, the school's director, letting me know that the pump has arrived, and that I can pick it up at my convenience.
My husband Bill and I take a drive to the school to pick up the pump. I bribe him to come along by telling him that we can look at motorcycles - an annual spring ritual that sometimes ends up with us actually buying a motorcycle. Being a good husband and father, Bill has sold his last motorcycle when M was diagnosed, so that we could pay her medical bills. The previous one he sold so that we could pay Big Brother's tuition. It's probably about time to get another one.
Bill agrees, and we take the half hour drive to the school to pick up the pump. We nervously leave it in the car while we browse the motorcycle selection. We look at stupid bikes, ugly bikes, and nice bikes. Then we leave so that M can view her new pump.
When she climbs into the car and sees the box, she makes little happy squirrel noises. She wants to rip the box open right then, but we ask her to wait until we get home.
We tear open the box immediately.
Inside is the pump ( a Medtronic Revel), a lot of manuals, a HIPAA policy, four boxes of infusion sets, four boxes of reservoirs, four AAA batteries, a One Touch Ultra Link glucose monitor, and a USB stick.
I had been told by the area rep for the pump company that M would be okay if she wanted to start pressing buttons on the pump. She wouldn't hurt it.
She pulled it out and pressed buttons, while I showed my parents what the infusion sets looked like. They had been reading up, and understood how they worked. I didn't have to explain that the infusion set is not surgically implanted.
Then I pulled out the reservoirs. All of this equipment looked pretty confusing. I figured I would have to read all of the literature that came in the box before I understand it all.
The first booklet of literature was called "The Basics of Insulin Pump Therapy". I read through it. There was no news in there. Check bg a bunch. You will still have to take injections once in a while. Bg is affected by diet and exercise. Basal is the constant insulin, bolus is the insulin you take to cover food that enters your body or to cover a spike in bg. Lows are caused by insulin. This was diabetes 101.
I figured I would learn more in the next booklet, "A Step-By-Step Guide to the Minimed Paradigm REAL-Time Insulin Pump." On page four, I found a diagram of the pump and all its parts and functions.
Now I understood what all this other stuff did.
Evidently, we were going to go back to purchasing vials of Humalog, instead of the cartridges that we had been buying for M's super cool insulin pen. The reservoir has a little plunger on it that sucks the insulin out of the vial for easy storage in the pump. According to the information in the booklet, the reservoir should hold about two or three days worth of insulin.
The screens and buttons on the pump can be locked or protected.
There is an airport card that can be given at airport security so that you don't have to remove your pump when you go through screening.
The bg meter will communicate with the pump, which will help it to calculate which dose you should give yourself, but will not administer the insulin until you tell it to.
Cold insulin tends to form air bubbles in the reservoir and the tubing, so it is better to fill your reservoir with insulin that is at room temperature.
There are "alarms" on the pump for empty reservoir, weak battery, failed battery test, and no delivery.
There are "alerts" for low battery and low reservoir.
M has been playing with the buttons. She has put the correct time and date on her meter. She has been wearing it, even though it is not attached to her body yet. She can't wait to show it off.
Now we wait for the trainer to call us to schedule M's "saline start", her week long practice with the pump using saline ( "It's like salt water" she told her grandparents.)
I can hardly wait to learn more about diabetes management with the pump: something I never thought I would have to know, nor did I intend to know anything about.
Monday, April 4, 2011
Answer to: How much does an insulin pump cost?
The pump costs $6,500
After insurance, it costs us $1,586
There is no discount for paying the full price up front.
There are payment plans that charge you $5 per month to be on them.
The lowest monthly payment is about $55 for 35 months.
I pay the final payment on college tuition for the older child next month.
I will pay the pump people the full amount them.
Thank God for our FSA.
After insurance, it costs us $1,586
There is no discount for paying the full price up front.
There are payment plans that charge you $5 per month to be on them.
The lowest monthly payment is about $55 for 35 months.
I pay the final payment on college tuition for the older child next month.
I will pay the pump people the full amount them.
Thank God for our FSA.
Saturday, March 19, 2011
The phone call
So, I made the call. I contacted our area rep for Medtronic to order M's pump.
I called on a Tuesday. From work. I left a brief message as instructed. No one called back.
M asked me three times that afternoon, "Will you call again tomorrow?"
Yes, of course. Darling.
I call the next day. I leave a brief message. I state that I would not be calling again so soon, except that I have an eager 13-year-old breathing down my neck.
When I get home, the return phone call arrives.
The rep, Lindsay, is very polite, and explains to me that she has had the flu, or else she would have called sooner.
I again explain the 13-year-old neck-breather-downer, and tell her that there are no worries.
Then Lindsay does her job. Questions are asked: age of patient, number of months/years since the diagnosis, height and weight. Then insurance questions: Type, Group number, Subscriber number, Subscriber name, Subscriber's place of employment and birth date. MY birth date, address, phone number, place of employment. The insurance company's phone number and address. M's DNE, endocrinologist, clinic/hospital. Number of units of insulin currently used, what types, how often M checks her bg, how often she receives injections, how many carbs she eats per meal, and what her bg range has been over the last 30 days.
THEN, we get to the good stuff: what color pump, what style, and which infusion set. I am asked what size reservoir she will need.
How should I know?
Apparently, according to her height and weight, M is right on the cusp of needing the larger reservoir, which means a different model than the one with the smaller reservoir. Lindsay and I agree to ask the DNE her opinion on the matter. Lindsay assures me that our DNE is "great" and "very organized", and will be a good resource for the information that Lindsay is seeking.
Lindsay also murmurs something about a four year commitment to the pump, which upon further reflection is probably something I should ask about. I suspect it has to do with how often insurance will let you upgrade the pump.
I am told that Lindsay will be sending me some forms to fill out. I am to fax them back to her. After she talks with our insurance to learn how much is covered, she will then contact us to tell us when the pump will be shipped.
And by the way, it needs to be shipped somewhere where a person can sign for it. Can she ship it my place of work?
No.
I work in a high school, where over 1,000 people go in and out of the main office every day. No, no, no, not at all.
I decide to have it sent to M's little Montessori school. 80 kids, six adults, all of them responsible. Plus M can lovingly cradle the box when it arrives.
Once it arrives, we will set up an appointment for "pump training."
Lindsay sends me the (redundant) form to be signed. I fax it from a friend's house, and warn M's principal about the package that might be arriving in a couple of weeks. She expresses her excitement for M.
Fingers are crossed. Breath is held. Novenas are being said.
Soon we will know the answer to the burning question: how much is this sucker going to cost us?
I called on a Tuesday. From work. I left a brief message as instructed. No one called back.
M asked me three times that afternoon, "Will you call again tomorrow?"
Yes, of course. Darling.
I call the next day. I leave a brief message. I state that I would not be calling again so soon, except that I have an eager 13-year-old breathing down my neck.
When I get home, the return phone call arrives.
The rep, Lindsay, is very polite, and explains to me that she has had the flu, or else she would have called sooner.
I again explain the 13-year-old neck-breather-downer, and tell her that there are no worries.
Then Lindsay does her job. Questions are asked: age of patient, number of months/years since the diagnosis, height and weight. Then insurance questions: Type, Group number, Subscriber number, Subscriber name, Subscriber's place of employment and birth date. MY birth date, address, phone number, place of employment. The insurance company's phone number and address. M's DNE, endocrinologist, clinic/hospital. Number of units of insulin currently used, what types, how often M checks her bg, how often she receives injections, how many carbs she eats per meal, and what her bg range has been over the last 30 days.
THEN, we get to the good stuff: what color pump, what style, and which infusion set. I am asked what size reservoir she will need.
How should I know?
Apparently, according to her height and weight, M is right on the cusp of needing the larger reservoir, which means a different model than the one with the smaller reservoir. Lindsay and I agree to ask the DNE her opinion on the matter. Lindsay assures me that our DNE is "great" and "very organized", and will be a good resource for the information that Lindsay is seeking.
Lindsay also murmurs something about a four year commitment to the pump, which upon further reflection is probably something I should ask about. I suspect it has to do with how often insurance will let you upgrade the pump.
I am told that Lindsay will be sending me some forms to fill out. I am to fax them back to her. After she talks with our insurance to learn how much is covered, she will then contact us to tell us when the pump will be shipped.
And by the way, it needs to be shipped somewhere where a person can sign for it. Can she ship it my place of work?
No.
I work in a high school, where over 1,000 people go in and out of the main office every day. No, no, no, not at all.
I decide to have it sent to M's little Montessori school. 80 kids, six adults, all of them responsible. Plus M can lovingly cradle the box when it arrives.
Once it arrives, we will set up an appointment for "pump training."
Lindsay sends me the (redundant) form to be signed. I fax it from a friend's house, and warn M's principal about the package that might be arriving in a couple of weeks. She expresses her excitement for M.
Fingers are crossed. Breath is held. Novenas are being said.
Soon we will know the answer to the burning question: how much is this sucker going to cost us?
 |
| Just a few more questions, Mrs. Huber. |
Monday, March 14, 2011
Belly adventures
Over the next few days we discuss the infusion sets.
I, like wimp, last fewer than 24 hours with the infusion set in my body. After whining about how aware I am of its presence in my body, M suggests that I remove my pinch-y feeling mio set, with the small amount of blood that is trapped in its tube. With a nod to "if you insist," I begin the process of removing the set. This proved to be harder than I had anticipated. The adhesive was very strong. I tried pulling it off like an adhesive bandage, but I had a hard time even finding a place to begin peeling the adhesive up. I picked at it with my fingernail until I got what appeared to be a likely location to begin pulling.
Have you ever tried removing any kind of industrial five gallon tub lid? Or a paint can lid? It was a similar experience on a smaller scale. Just when I thought I had it off, some part of the adhesive had stuck itself back down again.
The jiggly belly again proved unhelpful. Pull on the adhesive, and one's belly skin, and all the charm that comes with it, also pull upward. Not to mention that I really couldn't see the set very well over the obstacles that Frank Zappa, God rest his soul, affectionately called "mammalian protruberances."
I had to summon help in the form of a 13-year-old diabetic.
M peeled up the adhesive and instructed me to pull on the device itself. With the mio, one pulls the device out straight.
I did as I was told.
It didn't hurt or anything. I dutifully placed the set in the sharps container.
M wore her sets for the two days that she was told to wear them. I, like a mother, kept requesting status reports.
I asked, "Can you feel them now?" probably about every three hours or so. M was patient. Maybe it's because she is so excited. Sometimes she would say without irony, "Oh, yeah! I forgot I was wearing them!" Then she would break into a very satisfied smile. She was truly thrilled to realize that neither device made her feel uncomfortable.
Overall she was more aware of the presence of the Quick Set than the Silhouette, a fact that surprised her a bit. After showering, she also found that the Silhouette adhesive held on better. Strong adhesive is important to M, because she really likes to swim. After day number two, M declared that the Silhouette was her infusion set of choice.
Unlike her mother, she removed both sets without issue.
So, infusion set chosen, I am prepared to make "the phone call". It is time to order the pump from our regional representative. I have been thus instructed: Minimed, dark purple, with the Silhouette infusion set. Hurry up.
Let's hope that our insurance will cover this baby!
I, like wimp, last fewer than 24 hours with the infusion set in my body. After whining about how aware I am of its presence in my body, M suggests that I remove my pinch-y feeling mio set, with the small amount of blood that is trapped in its tube. With a nod to "if you insist," I begin the process of removing the set. This proved to be harder than I had anticipated. The adhesive was very strong. I tried pulling it off like an adhesive bandage, but I had a hard time even finding a place to begin peeling the adhesive up. I picked at it with my fingernail until I got what appeared to be a likely location to begin pulling.
Have you ever tried removing any kind of industrial five gallon tub lid? Or a paint can lid? It was a similar experience on a smaller scale. Just when I thought I had it off, some part of the adhesive had stuck itself back down again.
The jiggly belly again proved unhelpful. Pull on the adhesive, and one's belly skin, and all the charm that comes with it, also pull upward. Not to mention that I really couldn't see the set very well over the obstacles that Frank Zappa, God rest his soul, affectionately called "mammalian protruberances."
I had to summon help in the form of a 13-year-old diabetic.
M peeled up the adhesive and instructed me to pull on the device itself. With the mio, one pulls the device out straight.
I did as I was told.
It didn't hurt or anything. I dutifully placed the set in the sharps container.
M wore her sets for the two days that she was told to wear them. I, like a mother, kept requesting status reports.
I asked, "Can you feel them now?" probably about every three hours or so. M was patient. Maybe it's because she is so excited. Sometimes she would say without irony, "Oh, yeah! I forgot I was wearing them!" Then she would break into a very satisfied smile. She was truly thrilled to realize that neither device made her feel uncomfortable.
Overall she was more aware of the presence of the Quick Set than the Silhouette, a fact that surprised her a bit. After showering, she also found that the Silhouette adhesive held on better. Strong adhesive is important to M, because she really likes to swim. After day number two, M declared that the Silhouette was her infusion set of choice.
Unlike her mother, she removed both sets without issue.
So, infusion set chosen, I am prepared to make "the phone call". It is time to order the pump from our regional representative. I have been thus instructed: Minimed, dark purple, with the Silhouette infusion set. Hurry up.
Let's hope that our insurance will cover this baby!
 |
| In assorted colors! Purple, please! |
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