We had our meeting with the child psychologist on Wednesday. For most families they schedule a separate meeting with the patient. I am told that many teens come in and say that they are only there because their PARENTS want the pump and they don't - that's a sure-fire way to get your pump process put on hold.
The meeting was fine. They asked some questions about how treatment was done. I think they were impressed with how much we've learned and how far we've come in 5 months - yes its only been 5 months but the longest 5 months of my life. The only recommendations they had were:
- Get her a medical ID bracelet - the shoe tags just on the sneakers were enough; and
- At some point in the future, Emma may not WANT to wear a pump. Now is a good time while she is more resiliant to change.
So, they forwarded out to the CDE that the appointment was completed so we could move to the next step. The next step is getting the pump ordered, which means going head-to-head with the insurance company. We want that started as soon as possible because I know there will be rejections and fights and lots of phone calls. Unfortunately, the CDE is out until Tuesday. So, it will be almost a week from our psych appointment until the process can start. I know that doesn't sound like a lot, but when you get up every night at midnight and 3am, and often have to have juice and peanuts in the middle of the night, every day that takes longer is painful. The psychologists feels that we SHOULD be able to get rid of the 3am checks once we get all the settings tested and tweaked (about a month after we get the pump). I will always make sure I change her infusion site in the AM so that we have to day to make sure we have a good site and once we see that she's not typically messing with it in the bed, we might actually be able to sleep. What a novel idea.
Other than that, her days have been relatively normal. Today she got up from her nap and while I wasn't looking (I've been suffering from a pinched nerve in my shoulder for days, so sitting on the couch in pain) she got the Goldfish crackers out of the closet and took them on the porch and served herself a snack. It hadn't even been 3 hours since lunch, I hadn't tested her or counted out her food. A test for me. I tested her right away, guessed at how many she might have eaten and tried to dose based on how much insulin was still in her system from lunch, what her reading was, and how much she ate. WAY too many variables and she went low a bit later - but Mike was checking because of this and caught it with juice. Little rascal!
Friday, August 24, 2007
Tuesday, August 21, 2007
I just had a weird memory
The timeframe shortly after Emma's diagnosis is a blur. After the emotional destruction you feel during the diagnosis, and the fogginess you feel in your brain because all of a sudden you have to provide life-sustaining treatment to your child all day and all night, every day.
The Endo that worked with us in the hospital is not the one that treats her now. The End in the hospital didn't accept our insurance. So, when we left the hospital, she allowed me to call in for a few days with some numbers but made it clear to me we weren't "part of the practice" and I needed to decide whether I was going to go to them "out of network" or change.
So, I called the one pediatric Endo practice on our insurance (there are only 2 pediatric Endos in the area - one was in the hospital with us and the other treats us now). After I told them that I couldn't wait four months for an appointment, I finally got one for about 10 days after we left the hospital.
We met with the actual doctor that morning - not a nurse and not a Certified Diabetic Educator. Why? Because the only way they could fit us in is to schedule us with the "on call" Doctor - which is the one we wanted anyway. Anyway, the first thing she did is look at our numbers and our regimen and said "ok, we're changing it" and gave us a 10 minute crash course on the new regimen. It was about lunchtime, so she told us to go eat and then come back in the afternoon to meet with the nurse and CDE to get a little more training on how the practice worked, etc.
So, she handed us a new bottle of insulin and said "go eat and do the new regimen at lunch" and just like that we were changed from a sliding scale to a full basal/bolus.
Why did this memory come back for me so vividly this evening? Well, tomorrow is the first time Emma is going back to the main hospital since that visit - our follow-up visit was in the satellite clinic. We will probably be eating lunch in the cafeteria again and I was thinking how much easier it will be for us to dose her for lunch on this visit than it was on the last one.
Tomorrow is the appointment with the pediatric psychologist - a required step in the pump process. Hopefully she doesn't think the entire family is a complete nuthouse and unworthy of a pump! :)
The Endo that worked with us in the hospital is not the one that treats her now. The End in the hospital didn't accept our insurance. So, when we left the hospital, she allowed me to call in for a few days with some numbers but made it clear to me we weren't "part of the practice" and I needed to decide whether I was going to go to them "out of network" or change.
So, I called the one pediatric Endo practice on our insurance (there are only 2 pediatric Endos in the area - one was in the hospital with us and the other treats us now). After I told them that I couldn't wait four months for an appointment, I finally got one for about 10 days after we left the hospital.
We met with the actual doctor that morning - not a nurse and not a Certified Diabetic Educator. Why? Because the only way they could fit us in is to schedule us with the "on call" Doctor - which is the one we wanted anyway. Anyway, the first thing she did is look at our numbers and our regimen and said "ok, we're changing it" and gave us a 10 minute crash course on the new regimen. It was about lunchtime, so she told us to go eat and then come back in the afternoon to meet with the nurse and CDE to get a little more training on how the practice worked, etc.
So, she handed us a new bottle of insulin and said "go eat and do the new regimen at lunch" and just like that we were changed from a sliding scale to a full basal/bolus.
Why did this memory come back for me so vividly this evening? Well, tomorrow is the first time Emma is going back to the main hospital since that visit - our follow-up visit was in the satellite clinic. We will probably be eating lunch in the cafeteria again and I was thinking how much easier it will be for us to dose her for lunch on this visit than it was on the last one.
Tomorrow is the appointment with the pediatric psychologist - a required step in the pump process. Hopefully she doesn't think the entire family is a complete nuthouse and unworthy of a pump! :)
Tuesday, August 14, 2007
Putting a face to diabetes
A parent on the CWD forums put together a YouTube video comprised of photos of children with diabetes. Its quite powerful and you might even recognize a certain face :)
Friday, August 10, 2007
Three Steps Forward
Well, we have completed 3 steps on our checklist to putting Emma on a pump.
1) We attended pump night and we chose our pump - the Animas 2020. We liked the color screen the best, we liked the feel of the buttons and I think it has the best management for our 2 year old with little teeny doses
2) I scheduled our appointment with the child psychologist. Everyone going on the pump has to go through this step, and they even have a point where they talk to the children and the parents separately. I'm sure this is much more valuable for an older child than Emma, but if they'd like to carry on a conversation with her - I guarantee you she will oblige. Our appointment is in two weeks.
3) I faxed the paperwork to the pump company for them to start the process with the insurance company to purchase the pump. From what I understand, working with the particular medical supply company that our insurance company requires is painful, so I hope that they can navigate this as quickly as possible.
I hope to have her starting on the pump by mid-Sept. After we go through the psych appt, then the pump will be ordered and shipped. A pump representative will come to our house to train us on the pump and then Mike and I each have to wear it for a time with a saline drip before Emma wears it.
1) We attended pump night and we chose our pump - the Animas 2020. We liked the color screen the best, we liked the feel of the buttons and I think it has the best management for our 2 year old with little teeny doses
2) I scheduled our appointment with the child psychologist. Everyone going on the pump has to go through this step, and they even have a point where they talk to the children and the parents separately. I'm sure this is much more valuable for an older child than Emma, but if they'd like to carry on a conversation with her - I guarantee you she will oblige. Our appointment is in two weeks.
3) I faxed the paperwork to the pump company for them to start the process with the insurance company to purchase the pump. From what I understand, working with the particular medical supply company that our insurance company requires is painful, so I hope that they can navigate this as quickly as possible.
I hope to have her starting on the pump by mid-Sept. After we go through the psych appt, then the pump will be ordered and shipped. A pump representative will come to our house to train us on the pump and then Mike and I each have to wear it for a time with a saline drip before Emma wears it.
Saturday, August 4, 2007
Pumping
Next week we are starting the process to put Emma on a pump. Its not going to be easy but we hope that it will make things a little easier for us in the long run. For one thing, she has some strange "times of day" that we cannot adjust for well with the regimen we have (namely her body wants to go low between 10pm and 2am each night, leading to a juice and protein snack in the bed with us).
The process is supposed to take 2-3 months but we are trying to do it as quickly as possible to eliminate a couple of these lows that we are currently experiencing. This week is "Pump Night". We go have an introduction / initial training with the Nurse and then we meet with the pump vendors. I think I've narrowed it down to 2 pumps that I want to look at. The Nurse said that she normally doesn't recommend a pump but she is going to in our case because Emma is so little and her doses are so small. The pump she is recommending is one of the two - so we will spend a lot of time looking at that one on Wednesday.
After we decide on a pump, it has to be ordered and processed through Insurance. I have made, oh, 5 calls to the insurance company to confirm exactly how and where we can get a pump. The bad news is that I kept getting conflicting information - which is what I expected and the reason I called 5 times. The good news is that the one consistent piece of information I DID get is that it is covered 100% with no co-pay. That is good news since these cost about $7500 and even a 10% co-pay wouldn't be cheap.
After the pump arrives, Mike and I each have to wear it for a couple of days. We wear it with simply a saline drip. This is so that we understand what it takes to use a pump - since we will be managing the pump 100% until Emma is old enough. After we each wear it, then Emma will wear it for a few days to get used to it while we still do injections. There are lots and lots of cute little pouches that they sell to hold insulin pumps on a belt so I'm going to get her a couple so she'll enjoy it a little more.
Then we start the insulin drip through the pump. On all accounts, I understand that what you go through to get it calibrated is as bad as when you were first dealing with the diagnosis. The doses are little/teeny and they can be administered almost as frequently as every 15 minutes, so you are coming up with a scheme that gives the right dose in each time frame all day and all night long. Lote more finger sticks while you are figuring it out. AND then hoping that your infusion site is good (or the insulin won't get in) and the tubing doesn't get kinked OR your child doesn't disconnect it (I'm hearing funny yet not funny stories of 3 and 4 year olds disconnecting their own pump because they think its funny)
But in the end we should be able to manage her reading much better. No injections and insulin on a better schedule that SHOULD keep her from some of the shooting highs and dropping lows that we have been experiencing recently. I'll keep you updated.
The process is supposed to take 2-3 months but we are trying to do it as quickly as possible to eliminate a couple of these lows that we are currently experiencing. This week is "Pump Night". We go have an introduction / initial training with the Nurse and then we meet with the pump vendors. I think I've narrowed it down to 2 pumps that I want to look at. The Nurse said that she normally doesn't recommend a pump but she is going to in our case because Emma is so little and her doses are so small. The pump she is recommending is one of the two - so we will spend a lot of time looking at that one on Wednesday.
After we decide on a pump, it has to be ordered and processed through Insurance. I have made, oh, 5 calls to the insurance company to confirm exactly how and where we can get a pump. The bad news is that I kept getting conflicting information - which is what I expected and the reason I called 5 times. The good news is that the one consistent piece of information I DID get is that it is covered 100% with no co-pay. That is good news since these cost about $7500 and even a 10% co-pay wouldn't be cheap.
After the pump arrives, Mike and I each have to wear it for a couple of days. We wear it with simply a saline drip. This is so that we understand what it takes to use a pump - since we will be managing the pump 100% until Emma is old enough. After we each wear it, then Emma will wear it for a few days to get used to it while we still do injections. There are lots and lots of cute little pouches that they sell to hold insulin pumps on a belt so I'm going to get her a couple so she'll enjoy it a little more.
Then we start the insulin drip through the pump. On all accounts, I understand that what you go through to get it calibrated is as bad as when you were first dealing with the diagnosis. The doses are little/teeny and they can be administered almost as frequently as every 15 minutes, so you are coming up with a scheme that gives the right dose in each time frame all day and all night long. Lote more finger sticks while you are figuring it out. AND then hoping that your infusion site is good (or the insulin won't get in) and the tubing doesn't get kinked OR your child doesn't disconnect it (I'm hearing funny yet not funny stories of 3 and 4 year olds disconnecting their own pump because they think its funny)
But in the end we should be able to manage her reading much better. No injections and insulin on a better schedule that SHOULD keep her from some of the shooting highs and dropping lows that we have been experiencing recently. I'll keep you updated.
Thursday, August 2, 2007
One of those days
I just don't always understand this disease. For the past few days, we have had to treat an overnight low. We typically give juice but we've been adding in some peanuts for protein - protein helps keep the blood sugar higher once you get it up.
Do you know how difficult it is to get a 2 year old to eat peanuts and drink juice at 10pm or midnight. Well, that's not tough - but then getting her back to sleep is.
But we had another low at dinner. I had checked her 3 hours after her snack today and she was normal. 45 minutes later when our pizza arrived, she was down at 57. That's 3 hours and 45 minutes after dosing and it should have all but been out of her system by then.
Its so difficult to manage when her body keeps doing this.
Next week we start the 2-3 month process of putting her on a pump. One of the great things that we look forward to getting from the pump is the ability to adjust her "baseline" dose throughout the day - higher for times she runs high and less for times of day that she runs low - the key will be just figuring out those exact times.
The other thing I'm going to discuss with the nurse is a Continuous Glucose Monitoring System. That won't completely eliminate the need for finger sticks, but it will greatly reduce them AND it will send alarms when she gets too HIGH or too low. This will be valuable while on the pump because if there is a problem with the pump and its not administering insulin, she's go up quickly so the pump will tell us. And if she has some of the unexplained lows, especially in the night time, it will tell us that too.
But gosh, for the first time with all three of our kids, we might actually have to get a baby monitor to put in her room for night. We have always just counted on hearing the kids fuss if they really need us at night but I think we'll need the monitor to hear the alarms!
Do you know how difficult it is to get a 2 year old to eat peanuts and drink juice at 10pm or midnight. Well, that's not tough - but then getting her back to sleep is.
But we had another low at dinner. I had checked her 3 hours after her snack today and she was normal. 45 minutes later when our pizza arrived, she was down at 57. That's 3 hours and 45 minutes after dosing and it should have all but been out of her system by then.
Its so difficult to manage when her body keeps doing this.
Next week we start the 2-3 month process of putting her on a pump. One of the great things that we look forward to getting from the pump is the ability to adjust her "baseline" dose throughout the day - higher for times she runs high and less for times of day that she runs low - the key will be just figuring out those exact times.
The other thing I'm going to discuss with the nurse is a Continuous Glucose Monitoring System. That won't completely eliminate the need for finger sticks, but it will greatly reduce them AND it will send alarms when she gets too HIGH or too low. This will be valuable while on the pump because if there is a problem with the pump and its not administering insulin, she's go up quickly so the pump will tell us. And if she has some of the unexplained lows, especially in the night time, it will tell us that too.
But gosh, for the first time with all three of our kids, we might actually have to get a baby monitor to put in her room for night. We have always just counted on hearing the kids fuss if they really need us at night but I think we'll need the monitor to hear the alarms!
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