I have posted a few times about Emma's sling-shotting Highs and Lows. Well, for the past few days, its been basically Highs. And not small highs, big highs. I corrected a 476 at 3 hours after dinner last night. She didn't even eat enough food to spike her that high. That has been the case for the past few days.
I have checked her ketones over and over and she had none, so I'm confident she was getting insulin. And with corrections, she eventually comes down. So, I think we need to change some meal ratios. But gosh, I hate to do that right as we are going on vacation - talk about screwed up. We're probably gonna be so out of whack by the time we return.
Now I'm just waiting to hear back from the nurse about my proposed changes and then I'll be making some. This is just so frustrating.
Saturday, November 24, 2007
Monday, November 12, 2007
LO!
As much as the parent of a diabetic doesn't like the blood glucose meter to greet you with a HI (meaning blood sugar ABOVE 600), you REALLY don't want to see LO.
LO means less than 20. Many diabetics have had seizures with blood sugar levels higher than that.
We got a LO on the meter yesterday. It was during a time that Emma typically goes a little low, so we were checking her. We got a LO on the meter! So, while I was checking it again, Mike got Emma some juice. My 2nd reading was 24 - so that LO was pretty accurate.
Emma's only symptom of a problem with a bit of stumbling disoirentation. She doesn't know when she's low - or if she does, she doesn't know how to explain how she is feeling.
So, after quite a few days of degrees of lows around dinner, I lowered Emma's basal rate during that time. Not that I can check it today, as she has been running high all day so its tough to tell how effective a change in treatment is.
LO means less than 20. Many diabetics have had seizures with blood sugar levels higher than that.
We got a LO on the meter yesterday. It was during a time that Emma typically goes a little low, so we were checking her. We got a LO on the meter! So, while I was checking it again, Mike got Emma some juice. My 2nd reading was 24 - so that LO was pretty accurate.
Emma's only symptom of a problem with a bit of stumbling disoirentation. She doesn't know when she's low - or if she does, she doesn't know how to explain how she is feeling.
So, after quite a few days of degrees of lows around dinner, I lowered Emma's basal rate during that time. Not that I can check it today, as she has been running high all day so its tough to tell how effective a change in treatment is.
Tuesday, November 6, 2007
Finally, someone in respected media agrees with us
Reputed doctors are finally saying that Halle Berry's "miracle cure" of Type 1 diabetes was probably an initial misdiagnosis of Type 1 instead of Type 2.
ABC News Report
Well, Duh
ABC News Report
Well, Duh
Monday, November 5, 2007
PSA: Yes, my child can eat sugar
I'm a pretty trusting person. I also give most people the benefit of the doubt. So, I don't get as spun up as others do when "well meaning" people make assumptions about their children because they have Type 1 Diabetes.
A common one is this: Your child has diabetes; they can't have sugar.
Well, that USED to be true. Kinda. The older regimens of diabetic care (NPH and NNR) had insulins that "peaked" at certain times. So, you had to eat at certain times to avoid a low. And you had to eat just a certain amount to avoid a high. And you avoided sugary things because, well, they just weren't well managed with the older regimens.
Take the old regimens, old ways of thinking, and combine it with a media blitz talking about childhood obesity and diabetes (that would be Type TWO), and many "well meaning" people will assume your child should not or cannot have sugar
Not true.
Now, I don't stuff Emma full of sugar. But, then again, I don't stuff my other two children full of sugar either. Emma probably gets the same amount of "Refined sugar treats" as my other two children did at this age - not much. This was our first Halloween since diagnosis and its been the same for her as the other two - a couple of pieces after trick-or-treating and then one piece a day as dessert with a meal since then. It hasn't been every day that she's had a piece of candy after lunch or dinner, but we've had it when she asked (and when she ate the rest of her regular food, which is always a requirement).
I have stayed away from the "pure sugar" candy, such as sweet tarts. They will do nothing but spike her and then drop her. We'll save those to treat lows! But, she's had chocolate and has quite enjoyed it. We just add the carbs from the candy into her meal and give her a dose of insulin to cover it all. It works best that way, as the candy has a high glycemic index and putting it with some protein and lower glycemic index foods helps to slow the absorption and avoid the peak.
So, thanks for caring - but she can have sugar. We just regulate it just like we do with our other kids, because we don't want THREE of them bouncing off the walls!
A common one is this: Your child has diabetes; they can't have sugar.
Well, that USED to be true. Kinda. The older regimens of diabetic care (NPH and NNR) had insulins that "peaked" at certain times. So, you had to eat at certain times to avoid a low. And you had to eat just a certain amount to avoid a high. And you avoided sugary things because, well, they just weren't well managed with the older regimens.
Take the old regimens, old ways of thinking, and combine it with a media blitz talking about childhood obesity and diabetes (that would be Type TWO), and many "well meaning" people will assume your child should not or cannot have sugar
Not true.
Now, I don't stuff Emma full of sugar. But, then again, I don't stuff my other two children full of sugar either. Emma probably gets the same amount of "Refined sugar treats" as my other two children did at this age - not much. This was our first Halloween since diagnosis and its been the same for her as the other two - a couple of pieces after trick-or-treating and then one piece a day as dessert with a meal since then. It hasn't been every day that she's had a piece of candy after lunch or dinner, but we've had it when she asked (and when she ate the rest of her regular food, which is always a requirement).
I have stayed away from the "pure sugar" candy, such as sweet tarts. They will do nothing but spike her and then drop her. We'll save those to treat lows! But, she's had chocolate and has quite enjoyed it. We just add the carbs from the candy into her meal and give her a dose of insulin to cover it all. It works best that way, as the candy has a high glycemic index and putting it with some protein and lower glycemic index foods helps to slow the absorption and avoid the peak.
So, thanks for caring - but she can have sugar. We just regulate it just like we do with our other kids, because we don't want THREE of them bouncing off the walls!
Friday, November 2, 2007
67 and 545!
I saw both of those numbers today - yes, I did.
We have many days where we rarely see over 200 - except at breakfast(which I'll discuss in a minute), so to see 67 and 545 in the same day was quite a feat.
Now that Emma has finally kicked her bug, she has a couple of trends that I want to address. The first was the SPIKE that she has after breakfast - she can easily hit 350 to 400 at the 2-hour or even the 3-hour mark after breakfast (she has a 5 hour IOB). So, I wanted to try what so many on the Children With Diabetes board suggest - pre-bolusing. I had discussed it with the CDE and a couple of different approaches. Today, I wanted to just be simple. Estimate her carbs and then dose her when she sits down to eat (instead of after). That will give the insulin a 20 minute head start.
So, we do that and her 2-hour reading was 250 - not bad. But, then I realized that might not be good at all. A quick IM to Mike confirmed that she had NO protein at breakfast. Without protein, she SPIKES really high and then PLUMMETS to a low because the insulin can't catch the food. I don't know WHY Mike thought we could leave out the protein, but oh well. So, today wasn't a good test of the pre-bolus. That's where the 67 came from - at lunch.
So, I gave her some juice and then her lunch, did a slight negative correction and she went down for her nap. I set her a temporary basal rate of +20% when she goes down for a nap because she always goes HIGH. Well, definitely she did that today. She woke up at 545! Turns out we were at the full 3-day mark for her site - and her sites don't last 3 days. So, I did a quick site change (if I don't have to reload the cartridge or prime new tubing, I can do it very quickly) and gave her a correction to handle the 545.
But, the 2nd trend I wanted to treat today was perpetual lows right before dinner. Its usually between 4:30pm and 6pm that she drops - just about every day - whether she has a nap or not. Mainly because that is our running around time and she is often running down the sidewalk at Tae Kwon Do, or on the soccer field. So, I decreased her basal rate at 4pm (my first change in basal on my own without asking the CDE). But, I couldn't test it because of the 545 at 4pm that had to be treated.
So, two changes tried and none able to test the result. We'll try again tomorrow.
We have many days where we rarely see over 200 - except at breakfast(which I'll discuss in a minute), so to see 67 and 545 in the same day was quite a feat.
Now that Emma has finally kicked her bug, she has a couple of trends that I want to address. The first was the SPIKE that she has after breakfast - she can easily hit 350 to 400 at the 2-hour or even the 3-hour mark after breakfast (she has a 5 hour IOB). So, I wanted to try what so many on the Children With Diabetes board suggest - pre-bolusing. I had discussed it with the CDE and a couple of different approaches. Today, I wanted to just be simple. Estimate her carbs and then dose her when she sits down to eat (instead of after). That will give the insulin a 20 minute head start.
So, we do that and her 2-hour reading was 250 - not bad. But, then I realized that might not be good at all. A quick IM to Mike confirmed that she had NO protein at breakfast. Without protein, she SPIKES really high and then PLUMMETS to a low because the insulin can't catch the food. I don't know WHY Mike thought we could leave out the protein, but oh well. So, today wasn't a good test of the pre-bolus. That's where the 67 came from - at lunch.
So, I gave her some juice and then her lunch, did a slight negative correction and she went down for her nap. I set her a temporary basal rate of +20% when she goes down for a nap because she always goes HIGH. Well, definitely she did that today. She woke up at 545! Turns out we were at the full 3-day mark for her site - and her sites don't last 3 days. So, I did a quick site change (if I don't have to reload the cartridge or prime new tubing, I can do it very quickly) and gave her a correction to handle the 545.
But, the 2nd trend I wanted to treat today was perpetual lows right before dinner. Its usually between 4:30pm and 6pm that she drops - just about every day - whether she has a nap or not. Mainly because that is our running around time and she is often running down the sidewalk at Tae Kwon Do, or on the soccer field. So, I decreased her basal rate at 4pm (my first change in basal on my own without asking the CDE). But, I couldn't test it because of the 545 at 4pm that had to be treated.
So, two changes tried and none able to test the result. We'll try again tomorrow.
Wednesday, October 31, 2007
Quick Public Service Announcement
There are multiple types of Diabetes:
Type 1 diabetes means that your pancreas does not produce insulin. You must get insulin from another source in order to live. It will be through injections or an insulin pump.
Type 2 diabetes means that your pancrease produces insulin. Either it doesn't produce enough or your body cannot absorb it well. You "may" have to get insulin from another source. You "may" be able to control it through diet and exercise. It "may" be a result of being overweight. You "may" be able to get your insulin through a pill or an inhaled version.
There are some that are identifying a new form of diabetes - slow onset. They are calling it type 1.5. A Type 1.5 will eventually need to manage their diabetes like a Type 1.
You cannot "get over" Type 1 diabetes and become Type 2. Could you have been misdiagnosed? Perhaps, but I doubt it. Once your pancreas stops working (definition of Type 1) it doesn't miraculously start again. Because, trust me, if there was a way for that to happen, every single one of us who suffers through or with someone with diabetes would be lined up to get that treatment.
Now back to your regularly scheduled programming.
Type 1 diabetes means that your pancreas does not produce insulin. You must get insulin from another source in order to live. It will be through injections or an insulin pump.
Type 2 diabetes means that your pancrease produces insulin. Either it doesn't produce enough or your body cannot absorb it well. You "may" have to get insulin from another source. You "may" be able to control it through diet and exercise. It "may" be a result of being overweight. You "may" be able to get your insulin through a pill or an inhaled version.
There are some that are identifying a new form of diabetes - slow onset. They are calling it type 1.5. A Type 1.5 will eventually need to manage their diabetes like a Type 1.
You cannot "get over" Type 1 diabetes and become Type 2. Could you have been misdiagnosed? Perhaps, but I doubt it. Once your pancreas stops working (definition of Type 1) it doesn't miraculously start again. Because, trust me, if there was a way for that to happen, every single one of us who suffers through or with someone with diabetes would be lined up to get that treatment.
Now back to your regularly scheduled programming.
Tuesday, October 30, 2007
I guess I'll take the good with the bad
subtitle: There is just something so wrong with this entire situation!
I had to do a site change this afternoon - it was approaching 3 days and we were running out of insulin. Believe it or not, I've been getting a little extra time out of our sites that past few times, even WITH her illness. That would be nice, because every 2 days was getting real old.
So, I got everything ready and I warned Emma that I was getting ready to poke her behind. She was laying on the couch watch her shows. I asked her if she wanted to hold my hand. She said no. So I went ahead and put in the site, counted to five and removed the inserter - and not a peep out of her! That was the first time! And we don't use any numbing creme. We just deal with the pinch for a second and its over.
But then, I'm trying to get everything "put back together", her pump back in her pouch, etc, and I was finding myself trying to get her diaper taped back up and not get her tubing all twisted up in the diaper tape. There is just something SO wrong with having to worry about pump tubing with a diaper. Something really wrong!!
I had to do a site change this afternoon - it was approaching 3 days and we were running out of insulin. Believe it or not, I've been getting a little extra time out of our sites that past few times, even WITH her illness. That would be nice, because every 2 days was getting real old.
So, I got everything ready and I warned Emma that I was getting ready to poke her behind. She was laying on the couch watch her shows. I asked her if she wanted to hold my hand. She said no. So I went ahead and put in the site, counted to five and removed the inserter - and not a peep out of her! That was the first time! And we don't use any numbing creme. We just deal with the pinch for a second and its over.
But then, I'm trying to get everything "put back together", her pump back in her pouch, etc, and I was finding myself trying to get her diaper taped back up and not get her tubing all twisted up in the diaper tape. There is just something SO wrong with having to worry about pump tubing with a diaper. Something really wrong!!
Saturday, October 27, 2007
Lack of sleep will make you lose your mind!!
We haven't had much sleep since Wednesday morning when Emma first got sick. Our experiment last night in giving carbs overnight (with insulin) didn't help the ketones - she still woke up with them. And she had them during the day today too.
I did Emma's 2-hour and then her 3-hour after dinner check this evening - she went up between the two. That didn't surprise me, frankly, since her numbers have been wacky since she got sick
I gave her juice (I know, why give her juice when she's going up - but we need to for the ketones) and a big old correction. I went to update my spreadsheet and mentioned to Mike that if she still goes up, I'll go ahead and change her site, thinking we were coming up on 2 days for the site.
Turns out we are coming up on 3 days for the site! She has never had a site last 3 days and she is already about 5 hours past the longest site she's had.
So, I did a site change. But, this was AFTER the big old correction that I gave her. So, who knows how effective that dose will be and we'll have another night of ups and downs.
We're running a 20% increased basal overnight right now trying to keep the numbers down.
I just hope she kicks this bug soon!!
I did Emma's 2-hour and then her 3-hour after dinner check this evening - she went up between the two. That didn't surprise me, frankly, since her numbers have been wacky since she got sick
I gave her juice (I know, why give her juice when she's going up - but we need to for the ketones) and a big old correction. I went to update my spreadsheet and mentioned to Mike that if she still goes up, I'll go ahead and change her site, thinking we were coming up on 2 days for the site.
Turns out we are coming up on 3 days for the site! She has never had a site last 3 days and she is already about 5 hours past the longest site she's had.
So, I did a site change. But, this was AFTER the big old correction that I gave her. So, who knows how effective that dose will be and we'll have another night of ups and downs.
We're running a 20% increased basal overnight right now trying to keep the numbers down.
I just hope she kicks this bug soon!!
Thursday, October 25, 2007
Another rough night
So, after getting Emma's BG down yesterday morning and her ketones back to trace, we had a relatively normal afternoon. She ran a bit high but I just corrected and she was fine through dinner.
But, then she didn't come down much after her dinner dose and hit 400 again and stayed there. So we gave her a correction and waited a couple of hours. After she didn't budge, we ended up doing a site change and another correction in the new site. Her ketones were up to 2.4 already. She stayed awake for a little while that time (after not going to sleep until after 10pm).
She woke up in range this morning - but barely - she was 84. But, she still had ketones in the high moderate range. Treating ketones with low blood sugar is tough - because the way you treat ketones is with insulin. And the way you treat a low is sugar WITHOUT insulin. So, I had to get a lot of carbs in her, to get her up above her target range, so I could then correct her and give her enough insulin to clear the ketones.
I got her back down in range for lunch with no ketones thankfully. She's upstairs now taking a nap with an increased basal of 20% (which is typical - I just hope its enough).
And all of this because she has a low-grade fever - and no other symptoms.
But, then she didn't come down much after her dinner dose and hit 400 again and stayed there. So we gave her a correction and waited a couple of hours. After she didn't budge, we ended up doing a site change and another correction in the new site. Her ketones were up to 2.4 already. She stayed awake for a little while that time (after not going to sleep until after 10pm).
She woke up in range this morning - but barely - she was 84. But, she still had ketones in the high moderate range. Treating ketones with low blood sugar is tough - because the way you treat ketones is with insulin. And the way you treat a low is sugar WITHOUT insulin. So, I had to get a lot of carbs in her, to get her up above her target range, so I could then correct her and give her enough insulin to clear the ketones.
I got her back down in range for lunch with no ketones thankfully. She's upstairs now taking a nap with an increased basal of 20% (which is typical - I just hope its enough).
And all of this because she has a low-grade fever - and no other symptoms.
Wednesday, October 24, 2007
Rough morning
So we were a little surprised when Emma woke up today in the high 300s. Especially since she was 50 at 2:30am and we have gotten her juice at night DOWN so that she ends up in the 100s - sometimes the high 100s but the 100s no less.
So, when I saw the 397 on the meter, I took it again to make sure. The second reading was 409. Within the margin of error.
When you have a pumper with an unexplained high, you check for ketones (which is usually a good sign of whether your pump site is actually working or not). A trace amount of ketones is a measurement of 0.2. The last time she had a bad site, she had ketones of 1.6. I kinda expected some ketones in that range and I was fully prepared to treat those.
I was not prepared to treat ketones of 4.4!! I can't find a smilie that demonstrates the shock at that number. I took it again in the event it was just off - it wasn't. So, we quickly gave Emma a correction dose of insulin at 150% of the calculated correction dose - because the only way to reduce ketones is with insulin. I then paged the nurse to see what else I should be doing. Emma felt hot so we took her temperature and it registered just over 100. So, a low grade fever which COULD have triggered that enormous spike in her ketones.
Celia's response was just to keep testing and slowly correcting, feeding the extra insulin that we needed for the ketones to prevent a low.
Within 1 hour, her ketones were down to 2.2 - a shocking figure if I didn't know they were going DOWN. Within 2 hours, her ketones were down to .3.
Within 3 hours and 15 minutes of her first dose, she was back in range for her blood glucose.
That was a pretty uncomfortable 3 hours - I was actually WILLING time to move faster so that I could see that she was adjusting. And I think I tested ketones about 3 more times throughout the day because she has continued to complain about her stomach hurting despite the fact she is in range and has no ketones.
She still has the low grade fever, so she is probably fighting something. That means another night of extra checking so we can stop this from happening again tonight.
Boy, its situations like this that I wish we had a Continuous Glucose Monitor. For all the challenges and struggles you hear about these new machines, there are definite benefits - such as getting an alarm when that type of high reading comes out of nowhere.
So, when I saw the 397 on the meter, I took it again to make sure. The second reading was 409. Within the margin of error.
When you have a pumper with an unexplained high, you check for ketones (which is usually a good sign of whether your pump site is actually working or not). A trace amount of ketones is a measurement of 0.2. The last time she had a bad site, she had ketones of 1.6. I kinda expected some ketones in that range and I was fully prepared to treat those.
I was not prepared to treat ketones of 4.4!! I can't find a smilie that demonstrates the shock at that number. I took it again in the event it was just off - it wasn't. So, we quickly gave Emma a correction dose of insulin at 150% of the calculated correction dose - because the only way to reduce ketones is with insulin. I then paged the nurse to see what else I should be doing. Emma felt hot so we took her temperature and it registered just over 100. So, a low grade fever which COULD have triggered that enormous spike in her ketones.
Celia's response was just to keep testing and slowly correcting, feeding the extra insulin that we needed for the ketones to prevent a low.
Within 1 hour, her ketones were down to 2.2 - a shocking figure if I didn't know they were going DOWN. Within 2 hours, her ketones were down to .3.
Within 3 hours and 15 minutes of her first dose, she was back in range for her blood glucose.
That was a pretty uncomfortable 3 hours - I was actually WILLING time to move faster so that I could see that she was adjusting. And I think I tested ketones about 3 more times throughout the day because she has continued to complain about her stomach hurting despite the fact she is in range and has no ketones.
She still has the low grade fever, so she is probably fighting something. That means another night of extra checking so we can stop this from happening again tonight.
Boy, its situations like this that I wish we had a Continuous Glucose Monitor. For all the challenges and struggles you hear about these new machines, there are definite benefits - such as getting an alarm when that type of high reading comes out of nowhere.
Tuesday, October 23, 2007
Pretty stable
Things are finally getting pretty stable with Emma on the pump - well, that is as stable as they can ever be with a 2 year old with diabetes.
A couple of really nice results of pumping:
- When she is only 125 after her dinner dose is done, we can have confidence that she "probably" won't go low. That isn't always the case but in the past with Lantus, a 125 after dinner was a sure sign of a 50 at 2am.
- Emma will more often get into range after a meal - and into range will usually mean the LOW 100s. In the past, we were happy with higher 100s after meals.
We still have a couple of time periods to tweak. When Emma naps, we increase her basal rate by 20%. That doesn't always keep her in range so we might need to increase it to 30% and give it a shot.
Nap or not, Emma tends to head low right before dinner. I think its because the late afternoon is when we are at Tae Kwon Do or soccer or at some other activity while she's running around. We have lowered that basal rate but I think its needs a bit more lowering.
We have switched her I:C ratio for dinner about 5 times - back and forth from 1:20 and 1:22. Believe it or not, that crazy 2 carbs makes a big difference. If we dose 1:20, she will often go low at 3 hours after dinner. If we dose 1:22, she'll go high - into the mid 200s. That's a big swing for 2 little carbs.
But, despite those areas that I'm still monitoring, we are VERY happy with the pump.
A couple of really nice results of pumping:
- When she is only 125 after her dinner dose is done, we can have confidence that she "probably" won't go low. That isn't always the case but in the past with Lantus, a 125 after dinner was a sure sign of a 50 at 2am.
- Emma will more often get into range after a meal - and into range will usually mean the LOW 100s. In the past, we were happy with higher 100s after meals.
We still have a couple of time periods to tweak. When Emma naps, we increase her basal rate by 20%. That doesn't always keep her in range so we might need to increase it to 30% and give it a shot.
Nap or not, Emma tends to head low right before dinner. I think its because the late afternoon is when we are at Tae Kwon Do or soccer or at some other activity while she's running around. We have lowered that basal rate but I think its needs a bit more lowering.
We have switched her I:C ratio for dinner about 5 times - back and forth from 1:20 and 1:22. Believe it or not, that crazy 2 carbs makes a big difference. If we dose 1:20, she will often go low at 3 hours after dinner. If we dose 1:22, she'll go high - into the mid 200s. That's a big swing for 2 little carbs.
But, despite those areas that I'm still monitoring, we are VERY happy with the pump.
Friday, October 12, 2007
Pump start has gone well!
I haven't updated in a while. Perhaps because we have been so busy with pump start. Pump start has gone pretty well. But just about every expectation we had about how her settings would be have been blown out of the water.
- We have adjusted basal rates almost every day. We have about 6 different rates going throughout the day and will probably add a couple more before we are done.
- My CDE has finally admitted that Emma actually goes high when she takes a nap. She says she's only encountered one other patient that did that - so we now set a 20% increase in basal when she takes a nap
- All of our meal I:C ratios that we thought would be stable are not.
We've had sites go out in 6 hours, none of our sites have lasted 3 days, we had a lot more cases of ketones with the pump.
But despite all of that, it is still SO MUCH BETTER than injections. Its so much easier to get out of the house than it used to be. Its so much easier to dose her for a meal. I'm starting to see trends with her pumping the same way I saw them on injections, so we can try and counteract them.
So, definitely, this was the right decision for us!!
- We have adjusted basal rates almost every day. We have about 6 different rates going throughout the day and will probably add a couple more before we are done.
- My CDE has finally admitted that Emma actually goes high when she takes a nap. She says she's only encountered one other patient that did that - so we now set a 20% increase in basal when she takes a nap
- All of our meal I:C ratios that we thought would be stable are not.
We've had sites go out in 6 hours, none of our sites have lasted 3 days, we had a lot more cases of ketones with the pump.
But despite all of that, it is still SO MUCH BETTER than injections. Its so much easier to get out of the house than it used to be. Its so much easier to dose her for a meal. I'm starting to see trends with her pumping the same way I saw them on injections, so we can try and counteract them.
So, definitely, this was the right decision for us!!
Wednesday, September 12, 2007
Pump Start in 6 days!!
We are excited. Emma will be going on her insulin pump in 6 days. We are looking forward to this as we really believe this will make our lives so much easier. It will also give us some greater control with Emma as the pump can be so much more precise in her dosing than we ever can.
We had our training yesterday on the pump. While it seems intimidating, its really not that difficult to use. I have been wearing it now 24 hours and I have been given a steady "basal" dose of saline (for the test) and given myself doses for meals and to correct readings out of range. I have overriden the suggestion of the machine, taken it as is, and even cancelled a dose mid-stream. I even slept in it last night - it wasn't too bad.
I will wear it for a couple more days and then Mike will wear it - and yes, he will be putting in Emma's meals and dosing himself for her food as well (all with saline). Then Emma will be put on it with saline and we will practice dosing her with saline at the same time we are still giving her insulin shots. And then we go in next Tuesday and we start her insulin doses on the pump. Yay!!
A recent email from a friend made me realize that there is so much that people don't know about diabetes or diabetics. My next post will be geared to educate folks about diabetics, diabetes, and what Emma's life will be like as a diabetic (and what it could be like if we didn't have the advances we have today)
We had our training yesterday on the pump. While it seems intimidating, its really not that difficult to use. I have been wearing it now 24 hours and I have been given a steady "basal" dose of saline (for the test) and given myself doses for meals and to correct readings out of range. I have overriden the suggestion of the machine, taken it as is, and even cancelled a dose mid-stream. I even slept in it last night - it wasn't too bad.
I will wear it for a couple more days and then Mike will wear it - and yes, he will be putting in Emma's meals and dosing himself for her food as well (all with saline). Then Emma will be put on it with saline and we will practice dosing her with saline at the same time we are still giving her insulin shots. And then we go in next Tuesday and we start her insulin doses on the pump. Yay!!
A recent email from a friend made me realize that there is so much that people don't know about diabetes or diabetics. My next post will be geared to educate folks about diabetics, diabetes, and what Emma's life will be like as a diabetic (and what it could be like if we didn't have the advances we have today)
Friday, August 24, 2007
Another step towards the pump
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!
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!
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!
Tuesday, July 31, 2007
I AM crazy
I have too much to do. I always have too much to do. I often wonder about those people who have blissful time of not much to do. Not me.
But I keep taking it on.
I am now the Recruitment Leader for the JDRF Capital Chapter. This is a fantastic opportunity for me. I'll be using some of the skills that I used when I worked and working with something that I am (now) passionate about.
I'll be working to help identify opportunities to get more "Advocates" on board - advocates being people who are willing to contact our Senators and Representatives regarding important Diabetes issues. I'll also be contacting the Congressional Representative offices covered by our chapter (8 of them - between MD, DC, and VA) to schedule meetings to discuss their support of important legislation. Right now, that is the Special Diabetes Program, a $150M program that is up for renewal next Spring. We are starting a campaign to contact 400 representatives through meetings in their home districts to discuss how diabetes has affected our families and to ask for their support. I have 8 to get scheduled and 1 to attend (my own district)
I am excited about this role and it is very important in the chapter and involved with Government Relations, all of which is exciting to me, but who knows when I'll find the time to do it all!
But I keep taking it on.
I am now the Recruitment Leader for the JDRF Capital Chapter. This is a fantastic opportunity for me. I'll be using some of the skills that I used when I worked and working with something that I am (now) passionate about.
I'll be working to help identify opportunities to get more "Advocates" on board - advocates being people who are willing to contact our Senators and Representatives regarding important Diabetes issues. I'll also be contacting the Congressional Representative offices covered by our chapter (8 of them - between MD, DC, and VA) to schedule meetings to discuss their support of important legislation. Right now, that is the Special Diabetes Program, a $150M program that is up for renewal next Spring. We are starting a campaign to contact 400 representatives through meetings in their home districts to discuss how diabetes has affected our families and to ask for their support. I have 8 to get scheduled and 1 to attend (my own district)
I am excited about this role and it is very important in the chapter and involved with Government Relations, all of which is exciting to me, but who knows when I'll find the time to do it all!
Monday, July 30, 2007
How God selects the mother of a diabetic
How God Selects the Mother of a Diabetic Child
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
Did you ever wonder how mothers of children with diabetes are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint Matthew." "Forrest, Marjorie, daughter, Patron Saint Cecilia." "Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity." Finally, He passes a name to an angel and smiles, "Give her a child with diabetes."
The angel is curious. "Why this one, God? She's so happy."
"Exactly", smiles God. "Could I give a child with diabetes to a mother who does not know laughter? That would be cruel". "But has she the patience?" asks the angel.
"I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side. I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps. "Selfishness? Is that a virtue?" God nods. "If she cannot separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with less than perfect. She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone.
"And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles.
"A mirror will suffice."
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
Did you ever wonder how mothers of children with diabetes are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint Matthew." "Forrest, Marjorie, daughter, Patron Saint Cecilia." "Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity." Finally, He passes a name to an angel and smiles, "Give her a child with diabetes."
The angel is curious. "Why this one, God? She's so happy."
"Exactly", smiles God. "Could I give a child with diabetes to a mother who does not know laughter? That would be cruel". "But has she the patience?" asks the angel.
"I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side. I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps. "Selfishness? Is that a virtue?" God nods. "If she cannot separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with less than perfect. She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone.
"And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles.
"A mirror will suffice."
Tuesday, July 17, 2007
Welcome to my diabetes blog
I have been keeping a private journal of thoughts and information about our 2 year old Emma, who was diagnosed with diabetes in March of 2007. Over the next week or so, I will move posts from my other blog and post other thoughts that I have kept to bring all of my diabetes information together.
I hope this is theraputic for me and helpful for someone else who might be experiencing diabetes with their little one.
I hope this is theraputic for me and helpful for someone else who might be experiencing diabetes with their little one.
Monday, July 16, 2007
I'm so tired
When Emma was first diagnosed with Diabetes, the adrenalin kept me going. Kept me going through 3 nights of little to no sleep in the hospital (including a drive from one hospital to another at 1am the first night, and a switch from the PICU to the Pediatric floor at 1am the 2nd night). Kept me going through conflicting Doctor's orders and late food (which is an issue for a diabetic).
Once we came home, I got emotional. It didn't take much to set me off. The first month she was home was a blur. Hundreds of readings we didn't understand, constant calls to the Doctor, then the change to a new Doctor, lots of training with the new Doctor, and finally stabalizing a little.
We still get up at least once a night, and usually twice. Typically around midnight and 3am, based on what her readings are and what time we eat dinner. This is to prevent VERY SCARY low blood sugar readings overnight. I have told many people that its like having a newborn (having to get up overnight) without the sleeping during the day that helps a newborn's mother recover.
Now the reality of our life is really setting in. As I sat on the couch to give Emma her two injections after dinner I just sat there a minute and realized "this is my life". Until she leaves my house as an adult, I will be responsible for making sure she gets her medication all day and night, every day of my life. What an awesome burden. I'm so tired. And we've only just started.
There are lots of advancements on the horizon. Continuous Blood Glucose Monitoring. Infrared BG meters. Insulin Pumps. But, the only way to change this is to find a cure. In my lifetime. I can only hope.
But for now, I'm just tired. My brain is so tired of the responsibility. So tired of the worrying. So tired of watching the clock because I really want to know if her insulin worked at the 3 hour mark. So tired of testing her blood because she's fussy and I can't tell if she's just being 2 or her blood sugar is low.
I'm just so tired.
Once we came home, I got emotional. It didn't take much to set me off. The first month she was home was a blur. Hundreds of readings we didn't understand, constant calls to the Doctor, then the change to a new Doctor, lots of training with the new Doctor, and finally stabalizing a little.
We still get up at least once a night, and usually twice. Typically around midnight and 3am, based on what her readings are and what time we eat dinner. This is to prevent VERY SCARY low blood sugar readings overnight. I have told many people that its like having a newborn (having to get up overnight) without the sleeping during the day that helps a newborn's mother recover.
Now the reality of our life is really setting in. As I sat on the couch to give Emma her two injections after dinner I just sat there a minute and realized "this is my life". Until she leaves my house as an adult, I will be responsible for making sure she gets her medication all day and night, every day of my life. What an awesome burden. I'm so tired. And we've only just started.
There are lots of advancements on the horizon. Continuous Blood Glucose Monitoring. Infrared BG meters. Insulin Pumps. But, the only way to change this is to find a cure. In my lifetime. I can only hope.
But for now, I'm just tired. My brain is so tired of the responsibility. So tired of the worrying. So tired of watching the clock because I really want to know if her insulin worked at the 3 hour mark. So tired of testing her blood because she's fussy and I can't tell if she's just being 2 or her blood sugar is low.
I'm just so tired.
Friday, July 13, 2007
Finding Joy in the Morning
"Joy in the Morning" is the name of a blog that I often frequent. This woman is an inspiration. She strives to find joy in the morning despite some serious challenges in her life, including several miscarriages, a lost child at birth, serious childhood illnesses and the loss of a child at age 16. I think I would just curl up and die but she goes on and thrives.
I don't have nearly the challenges this woman has in her life. I don't have nearly the challenges that many others have in the lives. I do have challenges - don't get me wrong - but not like some others I read.
One of my challenges right now is wondering if I will EVER get more than 6-7 hours of sleep a night - and that is INTERRUPTED sleep. I see no prospects in the future for CONTINUOUS sleep. We have to get up with Emma at least once, and often twice overnight, to check her blood glucose levels. And worse than that, if we have to treat her, we have to stay awake at least 30 minutes to check her again. And if we aren't happy with the results, we have to treat her again and wait another 30 mintues. And I remind you this is often at 3am.
We are tired in our house. Physically tired. Emotionally tired. Completely drained. It is just so affecting our overall lives in so many ways.
I'm having trouble finding joy in the morning - most days I'd just like to find sleep. I hope the joy finds me again soon.
I don't have nearly the challenges this woman has in her life. I don't have nearly the challenges that many others have in the lives. I do have challenges - don't get me wrong - but not like some others I read.
One of my challenges right now is wondering if I will EVER get more than 6-7 hours of sleep a night - and that is INTERRUPTED sleep. I see no prospects in the future for CONTINUOUS sleep. We have to get up with Emma at least once, and often twice overnight, to check her blood glucose levels. And worse than that, if we have to treat her, we have to stay awake at least 30 minutes to check her again. And if we aren't happy with the results, we have to treat her again and wait another 30 mintues. And I remind you this is often at 3am.
We are tired in our house. Physically tired. Emotionally tired. Completely drained. It is just so affecting our overall lives in so many ways.
I'm having trouble finding joy in the morning - most days I'd just like to find sleep. I hope the joy finds me again soon.
Sunday, June 3, 2007
JDRF Walk
We participated in our local JDRF walk this weekend - the Juvenile Diabetes Research Foundation walk. It was damp and drizzled from time to time, but the temperature was cool and it was a nice morning. We saw some familiar faces and met some new friends and even got to talk to some pharmaceutical providers about the types of research and development they are doing in diabetes management
This is definitely a new "annual event" for the Stopper family.
Friday, April 13, 2007
Highs and Lows (again)
I've used that title before, but its still so appropriate I'm using it again.
It is the best way to explain Emma's week.
We are still on a roller coaster with her readings, although not as dramatic as we were. Starting last Sunday at lunchtime, Emma's readings went over 300 and they stayed there for 24 hours, despite giving her multiple insulin injections. They just didn't want to come down. It got as high as 475, which doesn't scare us nearly as much as it used to!! Anyway, after 24 hours, I went ahead and called into the nurse who told me to give her until she got through another meal and see how she was doing. I tested her right before lunch on Monday and she had come down - to TWENTY-NINE. That is NOT a typo - she was at 29. Many people would be unconscious at that reading - she was running around giggling as I corralled her into her high chair. Needless to say, we were a little freaked out by that reading and couldn't explain it - the nurses are baffled.
That started a period, however, with few highs. She had one high overnight that we treated but then the nurse said not to bother. It seems that children this age often excrete a growth hormone while they are sleeping - and its often around 3am - and it makes their blood sugar increase. So, when you swear that you think your children grew overnight, they did!
Anyway, her growth spurt subsided. We haven't had a reading over 250 since then. Her readings have been in the 60s and 70s most times. This is a little low for our liking (we want her over 100). And, she has decided she doesn't want to eat - which is often typical after a growth spurt too. So, between Emma's low blood glucose readings and her reduced eating, we have actually had several meals where we haven't even had to give her insulin. It was a nice break to give her poor arms and legs a break from all of the poking.
She's tired though because I have to keep waking her up at night to give her juice to keep her readings up - seems backwards to us!!
But, the nurses have changed around her treatment a little and we are trying a couple of things a little different to see how she does. We'll give that the weekend and see.
But, as I tell other folks - Emma seems no worse for the wear. Other than fussing about her shots right now, she's running around perfectly normal (like any normal 2 year old that is testing her boundaries and getting into EVERYTHING!)
It is the best way to explain Emma's week.
We are still on a roller coaster with her readings, although not as dramatic as we were. Starting last Sunday at lunchtime, Emma's readings went over 300 and they stayed there for 24 hours, despite giving her multiple insulin injections. They just didn't want to come down. It got as high as 475, which doesn't scare us nearly as much as it used to!! Anyway, after 24 hours, I went ahead and called into the nurse who told me to give her until she got through another meal and see how she was doing. I tested her right before lunch on Monday and she had come down - to TWENTY-NINE. That is NOT a typo - she was at 29. Many people would be unconscious at that reading - she was running around giggling as I corralled her into her high chair. Needless to say, we were a little freaked out by that reading and couldn't explain it - the nurses are baffled.
That started a period, however, with few highs. She had one high overnight that we treated but then the nurse said not to bother. It seems that children this age often excrete a growth hormone while they are sleeping - and its often around 3am - and it makes their blood sugar increase. So, when you swear that you think your children grew overnight, they did!
Anyway, her growth spurt subsided. We haven't had a reading over 250 since then. Her readings have been in the 60s and 70s most times. This is a little low for our liking (we want her over 100). And, she has decided she doesn't want to eat - which is often typical after a growth spurt too. So, between Emma's low blood glucose readings and her reduced eating, we have actually had several meals where we haven't even had to give her insulin. It was a nice break to give her poor arms and legs a break from all of the poking.
She's tired though because I have to keep waking her up at night to give her juice to keep her readings up - seems backwards to us!!
But, the nurses have changed around her treatment a little and we are trying a couple of things a little different to see how she does. We'll give that the weekend and see.
But, as I tell other folks - Emma seems no worse for the wear. Other than fussing about her shots right now, she's running around perfectly normal (like any normal 2 year old that is testing her boundaries and getting into EVERYTHING!)
Sunday, April 1, 2007
You really can find out almost anything on the Internet
I do believe that we are fortunate that Emma has developed Diabetes during this time of information technology. It makes it much easier for us to do Carb counting for her meals.
I haven't been feeling well today and decided that I was ordering pizza for dinner since Mike was leaving town. So, off to the Pizza Hut web site I go. I can put in the kind of pizza, toppings, and crust, and how many pieces of pizza Emma might eat, and it will give me a complete dietary breakdown, including carb count.
Did you know that 1 piece of Pizza Hut thin crust pizza with just cheese has 30 carbs!!
I have also been able to find out that a Chicken Nuggett Happy meal has 40 carbs - 10 for the nuggets and 30 for the french fries.
This is good information to know as we desire flexibility with when and where we eat!
I haven't been feeling well today and decided that I was ordering pizza for dinner since Mike was leaving town. So, off to the Pizza Hut web site I go. I can put in the kind of pizza, toppings, and crust, and how many pieces of pizza Emma might eat, and it will give me a complete dietary breakdown, including carb count.
Did you know that 1 piece of Pizza Hut thin crust pizza with just cheese has 30 carbs!!
I have also been able to find out that a Chicken Nuggett Happy meal has 40 carbs - 10 for the nuggets and 30 for the french fries.
This is good information to know as we desire flexibility with when and where we eat!
A quick update
I've been meaning to provide a quick update for a few days and just haven't gotten around to it.
We are settling into a good routine here. Emma's new insulin regimen works much better. Now if she doesn't eat enough, we can just adjust her insulin down. If she wants seconds, we can just adjust her dose up.
Her blood glucose levels aren't swinging as much as they were, but still swinging some. She has been going low at night, which is intriguing, but we may just adjust by giving her a little snack before bed (we cut that out just because it keeps her awake to eat at 8pm). She also seems to be a little high before dinner, but that is most likely from her afternoon snack, so we'll probably start giving her insulin after that.
She has adjusted beautifully. When we tell her we need to poke her finger, she always says "pinkie one". Then she asks if we have to "pokie leg?" She has now chosen to sit in her rocking chair in front of the TV for her injection and its just gotten so easy because she doesn't even say anything most times now when we give it to her.
Had a little scare earlier this week when the sleep-deprived Mommy gave Emma the wrong insulin in the morning. I realized it about 1 hour into its 2 hour effectiveness - it was her "short acting" insulin. So, she got about another meal's worth of carbohydrates in the form of juice and granola bars to offset the insulin and I was very happy when her readings came back up. The nurse said that is actually a pretty common mistake - didn't feel too common to me. At least it was a short-acting insulin and in 3 hours I knew it was completely back to normal.
So, outside of feeling like we have a newborn that has to eat every 3 hours all night, things are pretty normal. I have gotten Samantha and Michael back into school, although not the full routine that I'd like. We won't be having "Spring Break" per se this week, as I have assignments for them to do, but I'm sure if one of their friends comes knocking on the door to play, I'll let them go out! Is it awful to pray for rain! It's gonna be a tough week regardless as Mike leaves in about 2 hours for a week in San Francisco.
Anyway, looking forward to Easter. Larry (my brother) and his family will be here Sat night after spending a few days in the city and then on Sunday we are driving to Charlottesville to eat brunch at the Boars Head Inn with my parents and my older brother, who I haven't seen in 15 years!
As I hear Emma talking from her bed upstairs, I'll wrap it up and go retrieve her for a snack - anyone want to predict how many of her things are thrown out of the crib and onto the floor? I guess all of them!
We are settling into a good routine here. Emma's new insulin regimen works much better. Now if she doesn't eat enough, we can just adjust her insulin down. If she wants seconds, we can just adjust her dose up.
Her blood glucose levels aren't swinging as much as they were, but still swinging some. She has been going low at night, which is intriguing, but we may just adjust by giving her a little snack before bed (we cut that out just because it keeps her awake to eat at 8pm). She also seems to be a little high before dinner, but that is most likely from her afternoon snack, so we'll probably start giving her insulin after that.
She has adjusted beautifully. When we tell her we need to poke her finger, she always says "pinkie one". Then she asks if we have to "pokie leg?" She has now chosen to sit in her rocking chair in front of the TV for her injection and its just gotten so easy because she doesn't even say anything most times now when we give it to her.
Had a little scare earlier this week when the sleep-deprived Mommy gave Emma the wrong insulin in the morning. I realized it about 1 hour into its 2 hour effectiveness - it was her "short acting" insulin. So, she got about another meal's worth of carbohydrates in the form of juice and granola bars to offset the insulin and I was very happy when her readings came back up. The nurse said that is actually a pretty common mistake - didn't feel too common to me. At least it was a short-acting insulin and in 3 hours I knew it was completely back to normal.
So, outside of feeling like we have a newborn that has to eat every 3 hours all night, things are pretty normal. I have gotten Samantha and Michael back into school, although not the full routine that I'd like. We won't be having "Spring Break" per se this week, as I have assignments for them to do, but I'm sure if one of their friends comes knocking on the door to play, I'll let them go out! Is it awful to pray for rain! It's gonna be a tough week regardless as Mike leaves in about 2 hours for a week in San Francisco.
Anyway, looking forward to Easter. Larry (my brother) and his family will be here Sat night after spending a few days in the city and then on Sunday we are driving to Charlottesville to eat brunch at the Boars Head Inn with my parents and my older brother, who I haven't seen in 15 years!
As I hear Emma talking from her bed upstairs, I'll wrap it up and go retrieve her for a snack - anyone want to predict how many of her things are thrown out of the crib and onto the floor? I guess all of them!
Tuesday, March 27, 2007
New Doctor, New Regimen - seems to be working
So we saw the doctor who will be our permanent endocrinologist yesterday. It was a crazy, hectic appointment because we had to go to Children's Hospital in DC; AND, it was the Doctor's day "on call" which is the only way she was able to actually see us.
She was frustruated with the regimen that the doctor in the hospital had put Emma on; as we were since her levels hadn't stabilized over the week and a half we'd been out of the hospital.
She started a new regimen yesterday. We like it for a variety of reasons:
- We increased her "long lasting" dose (her Basel). This is supposed to be the insulin that manages her throughout the day.
- We changed to a fast-acting "after meal" insulin for adjustments(Bolas). This is great because its based on her level before eating AND how much she eats. If she wants more carbs at a certain meal, we can increase her dose to adjust. If we can't seem to force the food in her mouth (which is often the case), we just decrease her dose. This is GREAT for a child who isn't in a position to understand the need for a certain amount of food.
In the past 24 hours, she hasn't gone above 250 (whereas she had been averaging higher than that most days). She has been staying mostly between 80 and 150 - and our target is 180!! So, for us, we are thrilled with the way her body is reacting. Of course, this could also mean her pancreas has kicked back in for a last hurrah, but either way, she isn't swinging and that makes us happy.
She was frustruated with the regimen that the doctor in the hospital had put Emma on; as we were since her levels hadn't stabilized over the week and a half we'd been out of the hospital.
She started a new regimen yesterday. We like it for a variety of reasons:
- We increased her "long lasting" dose (her Basel). This is supposed to be the insulin that manages her throughout the day.
- We changed to a fast-acting "after meal" insulin for adjustments(Bolas). This is great because its based on her level before eating AND how much she eats. If she wants more carbs at a certain meal, we can increase her dose to adjust. If we can't seem to force the food in her mouth (which is often the case), we just decrease her dose. This is GREAT for a child who isn't in a position to understand the need for a certain amount of food.
In the past 24 hours, she hasn't gone above 250 (whereas she had been averaging higher than that most days). She has been staying mostly between 80 and 150 - and our target is 180!! So, for us, we are thrilled with the way her body is reacting. Of course, this could also mean her pancreas has kicked back in for a last hurrah, but either way, she isn't swinging and that makes us happy.
Friday, March 23, 2007
Baffling Body Chemistry
I assure you, after we get through this initial phase with Emma, it won't all be about her Diabetes. But for now...
Emma had a pretty good day yesterday. He numbers were getting more normal and the night before when I felt certain she was going to drop really low (because of her evening numbers), she stayed right on track. The one nurse I talked to said that her pancrease could even be beginning the "honeymoon phase" (after a person's sugars get back under control, their pancreas will often begin secreting insulin again. It's not much and it doesn't last forever - its sort of a "swan song" for your pancreas.
Well, Emma's body chemistry said "ha".
She was high over night (over 300). High enough for me to page the doctor, which I'm sure she loves at 3:15am! The Doctor had us give her an extra little dose of insulin overnight. But, her breakfast reading, morning snack, AND lunch readings were ALL over 300. It just doesn't make sense with the amount of insulin she had. It even baffled the nurse on the phone at lunch when she was deciding what to do. Both the doctor and the nurse made a comment "maybe she's coming down with something" (at which point I just wanted to pull out the gun and shoot myself). Getting a bug evidentally messes up your sugars too. Well, the nurse said to do Emma's normal dose and then check it about 3 hours later, when it should have been in effect (and the morning dose should still be working, since they overlap).
She was 150.
It just makes no sense, after being close to 400 for 12 hours, for a drop to 150 just 3 hours later!!
Baffling disease.
But hey, we got in with the new Endocrinologist on Monday. We have to drive all the way to DC for the initial visit BUT she got us a 10:30 appt, instead of the originally proposed 9am (which would have meant a 7am departure!)
Emma had a pretty good day yesterday. He numbers were getting more normal and the night before when I felt certain she was going to drop really low (because of her evening numbers), she stayed right on track. The one nurse I talked to said that her pancrease could even be beginning the "honeymoon phase" (after a person's sugars get back under control, their pancreas will often begin secreting insulin again. It's not much and it doesn't last forever - its sort of a "swan song" for your pancreas.
Well, Emma's body chemistry said "ha".
She was high over night (over 300). High enough for me to page the doctor, which I'm sure she loves at 3:15am! The Doctor had us give her an extra little dose of insulin overnight. But, her breakfast reading, morning snack, AND lunch readings were ALL over 300. It just doesn't make sense with the amount of insulin she had. It even baffled the nurse on the phone at lunch when she was deciding what to do. Both the doctor and the nurse made a comment "maybe she's coming down with something" (at which point I just wanted to pull out the gun and shoot myself). Getting a bug evidentally messes up your sugars too. Well, the nurse said to do Emma's normal dose and then check it about 3 hours later, when it should have been in effect (and the morning dose should still be working, since they overlap).
She was 150.
It just makes no sense, after being close to 400 for 12 hours, for a drop to 150 just 3 hours later!!
Baffling disease.
But hey, we got in with the new Endocrinologist on Monday. We have to drive all the way to DC for the initial visit BUT she got us a 10:30 appt, instead of the originally proposed 9am (which would have meant a 7am departure!)
Tuesday, March 20, 2007
The kind of post you wish you didn't have to post
For those in our immediate family and close friends, this is not new information. For others, it is.
Last Wednesday night at 10pm, I took Emma (our 2 year old) to the Emergency Room with extremely high blood glucose levels (a normal person would be between 80 and 130 and she was at 580). She was immediately admitted to the ICU and diagnosed with Type I (insulin dependent) Diabetes.
She stayed in the hospital until Saturday when she returned home and we began the processing of testing, and insulin shots on our own. I have spoken to the Doctor no fewer than 2 times a day since we have returned, and we have constantly been tweaking and modifying her injections until her body adjusts to the insulin and stabailizes.
I am happy to say that she has been "almost" stable for 24 hours. She had one "higher than normal" reading overnight, but the Doctor is fairly confident as to why this is happening and after leaving things alone today, she may make one more adjustment tomorrow that will probably address that reading.
But that's not the end of it. She will always have to monitor her sugar levels, and watch what she is eating. Right now, the struggles are making sure a 2-year-old eats what she needs to eat based on our injections. As she gets older, it will be more a "defiance" that will cause our challenges. And each growth spurt, and illness will be cause for adjustments.
But for now, we are just happy she is home and acting as though nothing has changed. She acts like nothing has happened and right now, she is currently transferring crayons back and forth from a lunch box to a Ziploc and back again (I think she has done this about 10 times now).
So for us, we have a goal of this having the least impact possible and being able to do things just as we normally have done. I do expect, however, that she will be eating more than one meal fed from tupperware at the soccer or baseball field so that she doesn't get off schedule.
From time to time, I will provide updates here, as its easier to cover everyone here than remembering all the emails I need to send!
Last Wednesday night at 10pm, I took Emma (our 2 year old) to the Emergency Room with extremely high blood glucose levels (a normal person would be between 80 and 130 and she was at 580). She was immediately admitted to the ICU and diagnosed with Type I (insulin dependent) Diabetes.
She stayed in the hospital until Saturday when she returned home and we began the processing of testing, and insulin shots on our own. I have spoken to the Doctor no fewer than 2 times a day since we have returned, and we have constantly been tweaking and modifying her injections until her body adjusts to the insulin and stabailizes.
I am happy to say that she has been "almost" stable for 24 hours. She had one "higher than normal" reading overnight, but the Doctor is fairly confident as to why this is happening and after leaving things alone today, she may make one more adjustment tomorrow that will probably address that reading.
But that's not the end of it. She will always have to monitor her sugar levels, and watch what she is eating. Right now, the struggles are making sure a 2-year-old eats what she needs to eat based on our injections. As she gets older, it will be more a "defiance" that will cause our challenges. And each growth spurt, and illness will be cause for adjustments.
But for now, we are just happy she is home and acting as though nothing has changed. She acts like nothing has happened and right now, she is currently transferring crayons back and forth from a lunch box to a Ziploc and back again (I think she has done this about 10 times now).
So for us, we have a goal of this having the least impact possible and being able to do things just as we normally have done. I do expect, however, that she will be eating more than one meal fed from tupperware at the soccer or baseball field so that she doesn't get off schedule.
From time to time, I will provide updates here, as its easier to cover everyone here than remembering all the emails I need to send!
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