There's much to be said for races. They can be invigorating, empowering, motivating - the list could go on for days. Sadly the chase I refer to (and the race we live day to day) is generally none of these things.
Every day that passes with Sierra's disease there is, however, opportunity. It's a little bit of a 'trick' opportunity, because in truth even while you're learning new things sometimes multiple times a day, typically it doesn't always *matter* the next. Why? Because diabetes is nuts.
Yep. That's right. It's crazy-town. Diabetes isn't logical, it isn't rational, it isn't graspable. It is a constantly moving, changing THING. Sure, there are a few bits that remain the same (lows are always lows, highs are always highs, my kid can be pretty understandably psycho during either) etc. But for the most part, the dumbest thing I appear to do as a parent and caregiver of a little diabetic is to EVER assume I know (in the greater sense) what the hell I am doing.
I know what needs to be done, I know how to do it, however, how effective what I know what to do and what I am doing changes constantly. That's the difficult piece. It's hard to explain to someone who doesn't live and breath it, but I'm trying. What makes diabetes so frustrating is the fact that is in every way 'a moving target'. Oh, she's low tonight? Okay lets give her more carbs tomorrow night so she doesn't drop twice in the middle of it tomorrow! Yay we figured it out!... wait what? We sent her to bed at 200 thinking we covered what was going to happen and.... she's still 200? And back, and forth, and WHAT?
It's kind of like that. Daily. Nightly. Sometimes you luck out and have a couple-day streak of numbers that you sorta nail and you pretty much feel like a bonafide genius. Until the next time ;)
In the mean time, I'm working on contacting and getting the ball rolling hopefully for a Dexcom4 CGM (continuous glucose monitor - I'll have to do a post on that in the future, kind of a long explanation) and the One Touch Ping (Animas Ping) pump. I think the plan is to roll everything out asap upon return from Hawaii in early May. Happy Birthday to Sierra, I suppose? Hopefully the transition from shots to sets works in our favor... I don't think using any kind of needle is ever going to go over well (at least not for several more years, if even then) but fewer must be a move in the right direction, right?
Hope so.
That's it for now, spring break + two busy kids = no quiet focus time for me to really put much more into this blog post. More later, hopefully!
In October of 2011, our 3 year old daughter Sierra was diagnosed with Type 1 Diabetes and spent three nights at the local PICU. These are our stories, experiences, and our life as a family of four moving forward.
Friday, March 30, 2012
Tuesday, March 20, 2012
Yay for Clinic!
When we 'go to a clinic appointment' - it basically means a visit to the Endocrines and measuring Sisi's A1C (essentially a blood test that tells us how well diabetes management is going. As a parent, it sort of feels like a pass/fail test - probably not the best way to look at it, but since we're in charge of her management if we're not doing it right the test won't lie!), and getting lots of good in person advice and consultation.
This was actually a great visit. I was very happy to meet a new doctor this round, the same one we'll be meeting with every time now as we're no longer driving all of the way to Stanford but instead to a satellite office in Los Gatos (woohoo!) for our once-every-3-months check ups. He was great! I've heard so much about this man within the local diabetic community, he's known for his extensive research and frequent speeches etc at diabetic events. I felt very sure being in his presence and having him explain and help us understand different things that have been troubling us.
The two days following clinic (which if you remember correctly - the previous weeks had been spent with a horrible amount of variation in her numbers, particularly scary lows and unexplained highs etc), I had her in a desired, normal blood sugar range of 100-150 almost non-stop. Granted, that never lasts, but it was so nice to just get a 2 days break from any craziness! We adjusted her numbers, scaled back on some things and discovered others and it's been a pretty positive result. I feel more free to work on the dosing after hearing some of the things the doctor explained to us and that's a pretty great feeling.
When she was diagnosed her A1C was 10.4 (doesn't really count, since she was obviously in the hospital but it gives you a starting point of reference), one month later at our follow up appointment after diagnosis she had gone to 7.2 - which we were told was pretty great. Yay! I was worried after all of the horrible numbers she was going to shoot back up to some crazy yuck number. I was surprised to hear she was 7.0. Unfortunately, this wasn't great either (although if you were an adult diabetic and this number came up within controlled #s it'd be pretty sweet), because it's only low due to the high percentage of lows. Still, I didn't get "in trouble" (hah), I was told we had room to bring her up to something like 7.4-7.8 for a comfortable place. 7.5 being a pretty ideal spot for someone her age. So that's the goal I'm working toward now.
To put it into perspective, typically a 'lower' A1C (5-7 for adults or 7.5-8.5 for young children as far as I understand) is indicative of good diabetes management - that means keeping her blood sugars in good levels more often than not, generally.
We also got some very good (different) perspectives on pumps and CGMs from this doctor, who I know does a GREAT deal of research on latest advancements and current CGMs on the market. I really feel drawn to his opinions (as opposed to 'pushed' in one direction or the other). He had a lot of positive things to say about most pumps, although he did feel for the doses Sierra is currently on the Omnipod probably wouldn't be the best solution due to it's .5 vs .25 insulin adjustment rates (a pump delivers insulin at a constant drip vs giving doses just for meals + a 24 hour dose once a day as we do now).
I feel right now that I'm leaning towards the Animas Ping. Which is funny because it really hadn't been on my list before... and I think we are definitely going to add in the Dexcom 4 CGM relatively soon, as well. He thinks within the next 8-12 months or so a newer version is going to be out that he feels is more accurate and seems pretty great, but in the mean time, we think it'd be worth going with his current recommendation. It should help us a little in understanding what different foods and activities are doing to her blood sugar.
I think we will decide between the Ping and Minimed within the next few weeks and get either on order and get this process started. I know we'll have a big learning curve (again) with this change in how we manage her diabetes, but I think in the long run it will absolutely be for the better. It will be easier to let her eat when she's hungry (and how much she eats!) and be a little easier for others to help care for her at times.
I'm excited. This was a very positive experience and I'm grateful for our new endocrine and his knowledge!
The hardest part now is trying to figure out when Sierra is 'just being 3 (almost 4)' or if she's low (or high) during those insanely irrational temper tantrums. I think we're at about 50/50 right now. Sheesh.
This was actually a great visit. I was very happy to meet a new doctor this round, the same one we'll be meeting with every time now as we're no longer driving all of the way to Stanford but instead to a satellite office in Los Gatos (woohoo!) for our once-every-3-months check ups. He was great! I've heard so much about this man within the local diabetic community, he's known for his extensive research and frequent speeches etc at diabetic events. I felt very sure being in his presence and having him explain and help us understand different things that have been troubling us.
The two days following clinic (which if you remember correctly - the previous weeks had been spent with a horrible amount of variation in her numbers, particularly scary lows and unexplained highs etc), I had her in a desired, normal blood sugar range of 100-150 almost non-stop. Granted, that never lasts, but it was so nice to just get a 2 days break from any craziness! We adjusted her numbers, scaled back on some things and discovered others and it's been a pretty positive result. I feel more free to work on the dosing after hearing some of the things the doctor explained to us and that's a pretty great feeling.
When she was diagnosed her A1C was 10.4 (doesn't really count, since she was obviously in the hospital but it gives you a starting point of reference), one month later at our follow up appointment after diagnosis she had gone to 7.2 - which we were told was pretty great. Yay! I was worried after all of the horrible numbers she was going to shoot back up to some crazy yuck number. I was surprised to hear she was 7.0. Unfortunately, this wasn't great either (although if you were an adult diabetic and this number came up within controlled #s it'd be pretty sweet), because it's only low due to the high percentage of lows. Still, I didn't get "in trouble" (hah), I was told we had room to bring her up to something like 7.4-7.8 for a comfortable place. 7.5 being a pretty ideal spot for someone her age. So that's the goal I'm working toward now.
To put it into perspective, typically a 'lower' A1C (5-7 for adults or 7.5-8.5 for young children as far as I understand) is indicative of good diabetes management - that means keeping her blood sugars in good levels more often than not, generally.
We also got some very good (different) perspectives on pumps and CGMs from this doctor, who I know does a GREAT deal of research on latest advancements and current CGMs on the market. I really feel drawn to his opinions (as opposed to 'pushed' in one direction or the other). He had a lot of positive things to say about most pumps, although he did feel for the doses Sierra is currently on the Omnipod probably wouldn't be the best solution due to it's .5 vs .25 insulin adjustment rates (a pump delivers insulin at a constant drip vs giving doses just for meals + a 24 hour dose once a day as we do now).
I feel right now that I'm leaning towards the Animas Ping. Which is funny because it really hadn't been on my list before... and I think we are definitely going to add in the Dexcom 4 CGM relatively soon, as well. He thinks within the next 8-12 months or so a newer version is going to be out that he feels is more accurate and seems pretty great, but in the mean time, we think it'd be worth going with his current recommendation. It should help us a little in understanding what different foods and activities are doing to her blood sugar.
I think we will decide between the Ping and Minimed within the next few weeks and get either on order and get this process started. I know we'll have a big learning curve (again) with this change in how we manage her diabetes, but I think in the long run it will absolutely be for the better. It will be easier to let her eat when she's hungry (and how much she eats!) and be a little easier for others to help care for her at times.
I'm excited. This was a very positive experience and I'm grateful for our new endocrine and his knowledge!
The hardest part now is trying to figure out when Sierra is 'just being 3 (almost 4)' or if she's low (or high) during those insanely irrational temper tantrums. I think we're at about 50/50 right now. Sheesh.
Friday, March 9, 2012
Lows Lows Lows.
Still sort of struggling for some sort of 'reasoning' where D is concerned here in the F household. Maybe this whole chasing game is going to take longer to accept than I thought but I hate feeling like I understand so little about something so BIG that has to do with my daughter. She's so young, she depends on me to take care of her and feeling so confused and stumped by some of the things that come up SO often lately makes me feel like a bit of a failure. I know it's temporary and things change day to day, but it can be tough to get through some days.
Yesterday, for example, Sierra for some unknown reason had a horrible bought of lows. Now, technically speaking anything under 80 is 'low'. Sierra frequently hits the high 40s, 50s and low 60s. I mean at least once daily. The problem I'm running into is that the other parts of the day she's either high or just about right - and these lows are like drive-bys. Totally random on any given day, never the same time twice, never the same circumstances etc. We've already lowered her Lantus so she wavers between 200-250 and then lows. Very few 'in range' numbers this past week.
What's probably more unfortunate is the lack of available phone support or turn around with our endo team at Stanford. They're very busy, they need at least one or two other endocrine nurse educators (which they'd probably overload shortly after their arrival anyway) - but oncall sometimes seems extreme, other times playing phone tag with the nurses can be frustrating. I have another child, I have times when I'm putting kids to bed, or am going to the bathroom or am driving and don't hear the phone or can't answer. Tag isn't exactly ideal in our current situation, but it's the name of the game right now.
Yesterday was especially rough. She started out great, 149 - awesome. She was in the mid-200s after breakfast - which is typically so I don't worry about it. 195 at lunch, great! My mom and I took her to the mall for a quick trip (just short of an hour), I tested again when we got back despite her behavior being completely normal - 51. Really? Juice. 20 minutes. 63. REALLY? Waited 15 more to see if we're just slowly going up - 75. Gave a few crackers to boost her theoretically as it normally would. Drove home, tested an hour later - 58. More juice. Finally 115. Whew. She passed out on the living room floor (just a nap - not literally) after dragging all of her blankets upstairs into the living room and laying them meticulously flat on the floor:
I imagine she was tired from being low for a good portion of time, so I let her rest for about 45 minutes before waking her to go out to dinner (and tested of course before hand). 61. *sigh*. Lots of juice. 209 at dinner. Finally. Now I'm bringing all of her ratios down and she stayed over 240 all night. I'm having school test her hourly today just to be safe. I can't handle all of the 40s she's had lately, it's scary!
We have our clinic appointment (once every 3 months you test for A1C levels - which is basically a blood panel that gives you a # that says how well you've been managing her blood sugar according to her body along with meeting with your endos and asking questions/going over doses and tweeking numbers) next Wednesday and I'm chomping at the bit.
Once we finish moving next week and get settled we're going to probably put in the paperwork to get the medtronic - I have a few questions I want to ask about in person at our appointment first. I also think a CGM is going to have to be in our semi-near future at this point. Not thrilled about sticking two needles into her that need to stay on all of the time, but I'm not thrilled about her numbers or frankly her disease either - so accepting some things I'm not happy about for the greater good is just going to have to be par for the course.
That's our update this week... sadly not fantastic news, but we keep chugging along.
Yesterday, for example, Sierra for some unknown reason had a horrible bought of lows. Now, technically speaking anything under 80 is 'low'. Sierra frequently hits the high 40s, 50s and low 60s. I mean at least once daily. The problem I'm running into is that the other parts of the day she's either high or just about right - and these lows are like drive-bys. Totally random on any given day, never the same time twice, never the same circumstances etc. We've already lowered her Lantus so she wavers between 200-250 and then lows. Very few 'in range' numbers this past week.
What's probably more unfortunate is the lack of available phone support or turn around with our endo team at Stanford. They're very busy, they need at least one or two other endocrine nurse educators (which they'd probably overload shortly after their arrival anyway) - but oncall sometimes seems extreme, other times playing phone tag with the nurses can be frustrating. I have another child, I have times when I'm putting kids to bed, or am going to the bathroom or am driving and don't hear the phone or can't answer. Tag isn't exactly ideal in our current situation, but it's the name of the game right now.
Yesterday was especially rough. She started out great, 149 - awesome. She was in the mid-200s after breakfast - which is typically so I don't worry about it. 195 at lunch, great! My mom and I took her to the mall for a quick trip (just short of an hour), I tested again when we got back despite her behavior being completely normal - 51. Really? Juice. 20 minutes. 63. REALLY? Waited 15 more to see if we're just slowly going up - 75. Gave a few crackers to boost her theoretically as it normally would. Drove home, tested an hour later - 58. More juice. Finally 115. Whew. She passed out on the living room floor (just a nap - not literally) after dragging all of her blankets upstairs into the living room and laying them meticulously flat on the floor:
I imagine she was tired from being low for a good portion of time, so I let her rest for about 45 minutes before waking her to go out to dinner (and tested of course before hand). 61. *sigh*. Lots of juice. 209 at dinner. Finally. Now I'm bringing all of her ratios down and she stayed over 240 all night. I'm having school test her hourly today just to be safe. I can't handle all of the 40s she's had lately, it's scary!
We have our clinic appointment (once every 3 months you test for A1C levels - which is basically a blood panel that gives you a # that says how well you've been managing her blood sugar according to her body along with meeting with your endos and asking questions/going over doses and tweeking numbers) next Wednesday and I'm chomping at the bit.
Once we finish moving next week and get settled we're going to probably put in the paperwork to get the medtronic - I have a few questions I want to ask about in person at our appointment first. I also think a CGM is going to have to be in our semi-near future at this point. Not thrilled about sticking two needles into her that need to stay on all of the time, but I'm not thrilled about her numbers or frankly her disease either - so accepting some things I'm not happy about for the greater good is just going to have to be par for the course.
That's our update this week... sadly not fantastic news, but we keep chugging along.
Sunday, March 4, 2012
Sharps.
So, obviously, I'm a newb to the world of 'sharps'. Needles are relatively a new thing for me and sure, I've gotten over my uncomfortable feeling about shoving one into anyone's arm (especially my squirming toddlers), however I finally had my first experience with Sharps DISPOSAL.
I'm sure to many, many people out there this is a pretty straight forward and obvious process. You get a sharps container, you fill it, you take it to a disposal spot or leave it out for the trash people. Right? Sure. Except I didn't know how(where) the heck to do that. I finally took the time to find out where I could take our container (local CVS, where we get her prescriptions filled - easy right? Score!). I was so proud, we finally ordered an 'official' sharps container because up until now we've just filled thick Tupperware containers and dumped them at our Clinic visits (we're only 4.5 months in, so bear with me). I filled the box, took it in to get it dumped - and stood there slack jawed when they took the whole thing and didn't come back.
Ooooooh, the light bulb goes on. See, here I figured they had some giant depository and they just crack the lid and tip it over and empty it then return the bin. I know, kind of naive right? Cut me some slack!! I was bummed. Goodbye new container... and then the realization 'wait...I have to buy a new fricking container just to be dumped every 1-2 months?! YUCK!'. Major yuck. Lucky for me someone in the checkout line overheard my dismay at the process and told me they accept milk jug containers as an option as long as you have the lid on.
WHEW. For some reason the idea of dumping a big ol' thing of plastic that was used specifically to collect more little plastic things really rubbed me the wrong way. At least we're already using milk jugs and now they get to be re-recycled in house before going out with the shots.
That's my goofy little tale of the day... on to more serious matters now that how to get rid of sharps is old hat for me *dusts knuckles on chest* yeaaah movin' on...
Sierra's numbers have still been pretty random. Unfortunately despite adjustments I've noticed she has an alarmingly RANDOM occurrence of daily lows (typically 1 - and by low I mean under 70, but usually in the 45-60 range lately). In a normal situation I would watch for a couple of days and fix as needed. The problem with these lows is that they NEVER OCCUR AT THE SAME TIME. Ever. Totally sporadic, totally unassociated with energy expense, totally and maddeningly hard to grasp. We test typically 8-10 times a day, so we see in between the lines and I am telling you this stuff doesn't make sense to me.
I like to think I'm a relatively smart, quick learning individual. I have to admit that diabetes makes me feel like a rube. I am struggling here because frankly none of it makes sense the way I think it should. When I think to myself one night "ok so according to xyz and everything pointing here as it has - she should be around 180-220 at the check tonight but back to 100-120 in the morning...", she's 61. WHAT? Trends don't seem to mean crap as far as diabetes is concerned and that really ticks me off.
Right now we're thinking of adding the pump in after Hawaii... and originally we were thinking CGM (continuous gluclose monitor) in a year or so after that. I'm not sure we'll make it that long. I can never guess whether she's going up or down at any given moment - and half of the time my assumptions are incorrect. Do all diabetics (or diabetic children) seem to go up from a normal range to about 200-300 roughly 1-2 hours after a meal then find themselves back in range by the following meal? I assume that's normal and not technically a spike - just the way it's delivered and how it all works through the system but it sure does throw me off. And then she doesn't get a carb snack because she's a little high - but then randomly she's low at lunch sometimes when I'd only checked an hour before and she was well over range.
IT IS DISCONCERTING! I can't keep up. I hope the call we plan on making to the endos clear some of this confusion up for me, I don't know if it's me or just the nature of the beast. It's hard to know when we're this new to the game. DH is baffled too, so at least I'm not dumb alone ;)
Our next clinic appointment is on the 14th and boy you can bet I'm going to squeeze every minute out of that team I can muster. Questions galore.
I'm sure to many, many people out there this is a pretty straight forward and obvious process. You get a sharps container, you fill it, you take it to a disposal spot or leave it out for the trash people. Right? Sure. Except I didn't know how(where) the heck to do that. I finally took the time to find out where I could take our container (local CVS, where we get her prescriptions filled - easy right? Score!). I was so proud, we finally ordered an 'official' sharps container because up until now we've just filled thick Tupperware containers and dumped them at our Clinic visits (we're only 4.5 months in, so bear with me). I filled the box, took it in to get it dumped - and stood there slack jawed when they took the whole thing and didn't come back.
Ooooooh, the light bulb goes on. See, here I figured they had some giant depository and they just crack the lid and tip it over and empty it then return the bin. I know, kind of naive right? Cut me some slack!! I was bummed. Goodbye new container... and then the realization 'wait...I have to buy a new fricking container just to be dumped every 1-2 months?! YUCK!'. Major yuck. Lucky for me someone in the checkout line overheard my dismay at the process and told me they accept milk jug containers as an option as long as you have the lid on.
WHEW. For some reason the idea of dumping a big ol' thing of plastic that was used specifically to collect more little plastic things really rubbed me the wrong way. At least we're already using milk jugs and now they get to be re-recycled in house before going out with the shots.
That's my goofy little tale of the day... on to more serious matters now that how to get rid of sharps is old hat for me *dusts knuckles on chest* yeaaah movin' on...
Sierra's numbers have still been pretty random. Unfortunately despite adjustments I've noticed she has an alarmingly RANDOM occurrence of daily lows (typically 1 - and by low I mean under 70, but usually in the 45-60 range lately). In a normal situation I would watch for a couple of days and fix as needed. The problem with these lows is that they NEVER OCCUR AT THE SAME TIME. Ever. Totally sporadic, totally unassociated with energy expense, totally and maddeningly hard to grasp. We test typically 8-10 times a day, so we see in between the lines and I am telling you this stuff doesn't make sense to me.
I like to think I'm a relatively smart, quick learning individual. I have to admit that diabetes makes me feel like a rube. I am struggling here because frankly none of it makes sense the way I think it should. When I think to myself one night "ok so according to xyz and everything pointing here as it has - she should be around 180-220 at the check tonight but back to 100-120 in the morning...", she's 61. WHAT? Trends don't seem to mean crap as far as diabetes is concerned and that really ticks me off.
Right now we're thinking of adding the pump in after Hawaii... and originally we were thinking CGM (continuous gluclose monitor) in a year or so after that. I'm not sure we'll make it that long. I can never guess whether she's going up or down at any given moment - and half of the time my assumptions are incorrect. Do all diabetics (or diabetic children) seem to go up from a normal range to about 200-300 roughly 1-2 hours after a meal then find themselves back in range by the following meal? I assume that's normal and not technically a spike - just the way it's delivered and how it all works through the system but it sure does throw me off. And then she doesn't get a carb snack because she's a little high - but then randomly she's low at lunch sometimes when I'd only checked an hour before and she was well over range.
IT IS DISCONCERTING! I can't keep up. I hope the call we plan on making to the endos clear some of this confusion up for me, I don't know if it's me or just the nature of the beast. It's hard to know when we're this new to the game. DH is baffled too, so at least I'm not dumb alone ;)
Our next clinic appointment is on the 14th and boy you can bet I'm going to squeeze every minute out of that team I can muster. Questions galore.
Subscribe to:
Posts (Atom)