We did it! Tech week and show day - always crazy. No two ways about it. Through some diabetes in there, and it's enough to break a girl!
Tech week involved practice every night from 5-8, which meant being gone 4:30 - 8:30. Which meant planning meals and snacks and insulin in a way that would work. We did it, but mercy, are we glad it's over.
Show day itself was great. It was a fun production, but not without adventure. Lights went down, and my phone started blowing up. Literally, as the curtain went up, Hannah's blood sugar went down and we had our first "crash." Thanks a million times over to the backstage mom who calmly took direction via covert text and helped Hannah. Like many things on this journey so far, all I could do was laugh.... She also dropped right before the second show, but other than that, the day went smoothly -- much more so than I'd thought it might.
Hannah is having a hard time being away from my house right now...not wanting to go to dads...even with the lure of Grammy and Bumpa. It's making everyone hurt. I know it'll resolve over time, but it certainly adds a layer of complexity to the adventure we're on....
Saturday, March 31, 2012
Friday, March 30, 2012
211!!!!
Best nighttime blood sugar yet! It would seem nighttime Levemir is working as hoped.
Whoooooooooooop.
Whoooooooooooop.
Wednesday, March 28, 2012
What. A. Day.
We've been having high sugars...really, things haven't been "under control" yet. Which is unnerving, exhuasting, scary and overwhelming. But yesterday morning takes the sugar-laden, frosting-covered cake.
Hannah went to band, up at Truman. Calls me at 8...her blood sugar was over 550 -- more than 100 points higher than when we were admitted to the ER. Sigh.
What to do, what to do, what to do. Decided to have her give herself more insulin. Wait in the nurses office at Truman and then ride the band bus back to school. Test her numbers again at 9, 10:30. Thankfully when I talked to the clinic hey confirmed my thinking. That was a confidence builder for sure.
A day full of texts and calls to school nurses and teachers and Hannah. A new insulin protocol. An extremely emotional girl who was sure her bs level would land her back at the hospital.
Blood sugar came down. And of course went low. :). So we practiced what to do when blood sugars are low.
Our new direction with insulin means wonky (wonkier?!?) blood sugars for a few days. Timing couldn't be worse with Hannah's play. But I'm finding diabetes to be a heartless bitch who doesn't much care what else is going on. Ah well. We will cope.
Hannah is scared to go to band. Scared to go to school. Scared to go to play practice. Scared to eat. Here is hoping with move though this particular phase quickly.
Have a great day!!
Katie
Hannah went to band, up at Truman. Calls me at 8...her blood sugar was over 550 -- more than 100 points higher than when we were admitted to the ER. Sigh.
What to do, what to do, what to do. Decided to have her give herself more insulin. Wait in the nurses office at Truman and then ride the band bus back to school. Test her numbers again at 9, 10:30. Thankfully when I talked to the clinic hey confirmed my thinking. That was a confidence builder for sure.
A day full of texts and calls to school nurses and teachers and Hannah. A new insulin protocol. An extremely emotional girl who was sure her bs level would land her back at the hospital.
Blood sugar came down. And of course went low. :). So we practiced what to do when blood sugars are low.
Our new direction with insulin means wonky (wonkier?!?) blood sugars for a few days. Timing couldn't be worse with Hannah's play. But I'm finding diabetes to be a heartless bitch who doesn't much care what else is going on. Ah well. We will cope.
Hannah is scared to go to band. Scared to go to school. Scared to go to play practice. Scared to eat. Here is hoping with move though this particular phase quickly.
Have a great day!!
Katie
Tuesday, March 27, 2012
School...
We survived with no nurse. We survived with no teacher. We survived a field trip. We survived our first low blood sugar. We survived really high blood sugars. We survived the PE teacher monitoring carb counts and insulin shots. We survived someone bringing cupcakes to school. We survived telling our friends. We survived checking our blood and doing insulin at school.
Not too shabby for the first 4 days.
Not too shabby for the first 4 days.
Sunday, March 25, 2012
2am....
It isn't that the two am blood sugar checks are terrible. Honestly, they're the best ones. Hannah is asleep, or sleepy. Even if she wakes, she is delirious and relatively happy. There is no fussing. It is the falling back asleep part that is tough. I have to be awake enough to know what I'm doing. Lights are on. I'm usually waking before my alarm because I'm afraid of overshooting it. My normal wake time is 430-5. If I'm not getting back to sleep until 3, it makes for some wonky sleep. And that's if I'm getting back to sleep. :). Since I'm blogging at 2:44, take a guess at how sleep is working for me :). In theory, this is temporary, though I've talked to several moms who said it was a long time before they could stop doing 2 am. It's one thing to be functioning enought to get through the days at home. I'm more than a bit nervous about what this is going to look like when I return to work.
Saturday, March 24, 2012
JDRF
Went to a great session put on my JDRF. It was a lot to take in. I was surprised to listen to the questions of those a year in. It definitely sounds like this remains consuming and doesn't really stabilize for some time. Which is scary to me. I have a hunch that I'm going to renegotiate both my understanding of being tired and my capacity for getting things done.
Hannah was pretty emotional still today. Some of it is rational. Some not. It is really an interesting thing to try to parent through. I'm hoping that at some point, as her sugars "stabilize" that her moods will as well. Just in time for puberty. Ahahahahaha. I should just give up now.
Hannah was pretty emotional still today. Some of it is rational. Some not. It is really an interesting thing to try to parent through. I'm hoping that at some point, as her sugars "stabilize" that her moods will as well. Just in time for puberty. Ahahahahaha. I should just give up now.
Save the date: May 12
South Sound Walk to Cure Diabetes
May 12: 15th Annual South Sound Walk to Cure Diabetes – Cheney Stadium. Join us for a fun filled day while we walk and raise funds for a cure! Day of event festivities start at 7:30 a.m. and the walk starts at 9:00 a.m. Register today at walk.jdrf.org
May 12: 15th Annual South Sound Walk to Cure Diabetes – Cheney Stadium. Join us for a fun filled day while we walk and raise funds for a cure! Day of event festivities start at 7:30 a.m. and the walk starts at 9:00 a.m. Register today at walk.jdrf.org
Learn, Learn, Learn
Children with diabetes: http://www.childrenwithdiabetes.com/
Barbara Davis Center: http://www.barbaradaviscenter.org/
Barbara Davis Center: http://www.barbaradaviscenter.org/
Friday, March 23, 2012
They have arrived....
The tears, that is. It has hit her that this is hard. And unfair. And painful. And until they find a cure.
And I can't fix it or make it better or more palatable.
We aren't sick...we are complicated. And tonight we have broken hearts.
And I can't fix it or make it better or more palatable.
We aren't sick...we are complicated. And tonight we have broken hearts.
Thursday, March 22, 2012
We survived....
Today was the first real day back at school. No mom. School nurse was there. Han did well. As I catch up on blog posts, you'll learn that last night nearly buried me. So saying "Han did well." is not something that was a given. We had some, um, drama around the use of our new insulin pen. Drama that may have resulted in Hannah looking at me as if I was an actual ax murderer. Not fun.
My day was spent answering texts from Han and trying to get all our prescriptions filled and crap (read endless supplies) organized. If you stop by, please know I may place a bag over your head to save you from witnessing the chaos that has descended.
Stopped to get goodies for a hospital care package. Next time you're at the dollar store, pick up 10-20 bucks worth of color books, puzzles and word find books for your local hospital. Han can vouch--kids are thankful.
Blog will be all discombobulated for a few days as I catch up on posts. So as you check back, read some of the history.
XO
Katie
My day was spent answering texts from Han and trying to get all our prescriptions filled and crap (read endless supplies) organized. If you stop by, please know I may place a bag over your head to save you from witnessing the chaos that has descended.
Stopped to get goodies for a hospital care package. Next time you're at the dollar store, pick up 10-20 bucks worth of color books, puzzles and word find books for your local hospital. Han can vouch--kids are thankful.
Blog will be all discombobulated for a few days as I catch up on posts. So as you check back, read some of the history.
XO
Katie
Wednesday, March 21, 2012
A friend....
Wednesday was our first appointment at the diabetes clinic. Super nice people. Super nice.
It was a huge relief to get some questions answered. It is a very humbling feeling to suddenly not know how to feed your child. You leave the hospital feeling like things must be very regimented and precise. And in some ways they must be. But in other ways, not so much. Which was such good news. I think I'm getting a handle on things. Sort of.
But as we were walking out of our 3.5 hour appointment there was a sweet little girl checking in. Unlike most clinics, you know why everyone is here. We commented on her cute boots and struck up a conversation. Ali is also almost 11 and in 5th grade. Diagnosed when she was 4. Rocking the insulin pump since she was 5. Likes to read and likes to shop. Sound like anyone we know?
Phone numbers were exchanged with promises of a later get together. By the time we hit the elevator, we had a text inviting us to wait and have lunch with them! We had a great lunch and visit. The girls exchanged numbers--a diabetes friend is the newly discovered exemption to the "this phone is for emergencies" rule--and spent much of the afternoon texting.
Friends are awesome, but a friend who gets you, a friend with diabetes, that is beyond words.
Tuesday, March 20, 2012
"diabetes people are cool!!"
Hannah came home to a box with a backpack STUFFED with diabetes loot. Including a bear with a medical alert bracelet. "Diabetes people are so cool!!"
Artificial pancreas! Whoop!
http://www.cnn.com/2012/03/04/health/artificial-pancreas/index.html
Check out this research.
Check out this research.
Monday, March 19, 2012
Sunday night...
Another good night. We got an earlier start on the day yesterday, so her last check was at 9, so we didn't have to wake up. 2 am was very similar. She slept from 930 - 6. Woke her up at 6:00 to stayon a better schedule for today.
Her sugars have been:
3 pm: 182
6:00 Dinner: 251 She was starving after dinner, and we pretty well ran through just about every type of 0 carb snack we had (jello, cheese) until Hannah rememebered sausage was 0 carb. And then there was peace in the world again.
9:00 Bedtime 280 = since she was getting 1 unit novolog, she ate a snack. still hungry.
2 am: 335 Slept through it -- even two sticks because she didn't feel like bleeding. those pointer fingers are fussy. We did not give insulin per instruction because they want to check on how Levimir is working. She would've only needed 2 units.
6:00 am Breakfast: 357 Gave her the 10 Levimir right away while I cooked breakfast and then she had 5 correct + 3 cover = 8 Novalog. Split the shots again.
Meeting with school nurse at 815 to get her okayed to go back to school with supervision. Visiting with Truman nurse afterward as Hannah was anxious about that -- no sense holding that angst til September. In between, calling clinic to likely get her Levemir adjusted because her nightime/breakfast levels have been high. This was expected.
Her sugars have been:
3 pm: 182
6:00 Dinner: 251 She was starving after dinner, and we pretty well ran through just about every type of 0 carb snack we had (jello, cheese) until Hannah rememebered sausage was 0 carb. And then there was peace in the world again.
9:00 Bedtime 280 = since she was getting 1 unit novolog, she ate a snack. still hungry.
2 am: 335 Slept through it -- even two sticks because she didn't feel like bleeding. those pointer fingers are fussy. We did not give insulin per instruction because they want to check on how Levimir is working. She would've only needed 2 units.
6:00 am Breakfast: 357 Gave her the 10 Levimir right away while I cooked breakfast and then she had 5 correct + 3 cover = 8 Novalog. Split the shots again.
Meeting with school nurse at 815 to get her okayed to go back to school with supervision. Visiting with Truman nurse afterward as Hannah was anxious about that -- no sense holding that angst til September. In between, calling clinic to likely get her Levemir adjusted because her nightime/breakfast levels have been high. This was expected.
Friday, March 16, 2012
St Patrick's Day Eve
Hey. Happy St. Patrick's Day Eve….hope you have your green planned out for tomorrow! Kids did both ask if we could still have the party tomorrow since we're home…all I can say is I am so glad my friends bullied me into postponing. I'm pretty sure I would've managed to food poison everyone in my delirium. Never fear - there are dozens of pounds of potatoes and 70lbs of corned beef in my fridge. The party WILL go on.
We got home around 2 today, and it was game on. Had our first lowish blood sugar with shakes right out of the gate. And neither of us died. Whew.
Hannah was missing school in a bad way, so we went up to visit a few of our favorites at school until the point at which I was actually seriously contemplating a nap on the floor at school while social Sally chatted her way around the building.
We came home, set two alarms for a 45 minute nap and fell promptly asleep. So it was an hour and 45 later when I sort of woke up and looked at my phone, a bit confused as to who I was, where I was, when it was, and why I'd overslept — especially seeing that the phone had been ringing and messages had been coming in and I'd heard nothing. We were in PM. Not AM. Alarm was set for AM Sooooooo…my choices were maniacal laughter or hysterical tears. I chose laughter and I woke Hannah up and we got right about blood sugar, dinner and insulin in short order. As I said to some of you, our imperfect life of diabetes has begun. And neither of us died. Whew.
Randomly our educator called to confirm our pharmacy. When she asked how things were going, I giggled (man, people, I am freaking tired!) and relayed the whole deal. And she agreed — what a huge relief that things didn't go perfect. It definitely takes the heat off a bit around being rigid and perfect in the execution of things. Rest assured I've checked the alarms for 10 pm and 2 am several times and am doing my level best to just stay up til 10 because I think at this point not much would raise me from sleep.
This weekend is kind of a get our act together time — some shopping (though H was online ordering a cute medic alert bracelet by 630 this am) for groceries and getting organized. We were home 10 minutes before Hannah had the labeler out. You would not believe the number of parting gifts/books/materials/supplies we walked out of that joint with. Never mind the places we're supposed to check out online and things we should google for.
We've got a good plan for this week — appts with school, with our new doc at the diabetes clinic and then just making the adjustment back to school. And so life goes on. Cody has a trumpet competition tomorrow, needs a haircut and has indoor soccer. Hannah's got play practice and the production of Annie in a few weeks. I've got work and our regular nonsense to get back to. Hannah wants to run You Go Girl and is already asking to sign up for the diabetes run at Cheney Stadium. She wants to go to diabetes camp this summer.
Our educator said, and I believe, we've got a whole new family of diabetes peeps and lots to do/learn/enjoy. And crap, it's only 9:17….I have no idea how to stay awake for the next 43 minutes :) I said it before, I'll say it again — thanks to all of you for your notes, texts, calls, etc.
We got home around 2 today, and it was game on. Had our first lowish blood sugar with shakes right out of the gate. And neither of us died. Whew.
Hannah was missing school in a bad way, so we went up to visit a few of our favorites at school until the point at which I was actually seriously contemplating a nap on the floor at school while social Sally chatted her way around the building.
We came home, set two alarms for a 45 minute nap and fell promptly asleep. So it was an hour and 45 later when I sort of woke up and looked at my phone, a bit confused as to who I was, where I was, when it was, and why I'd overslept — especially seeing that the phone had been ringing and messages had been coming in and I'd heard nothing. We were in PM. Not AM. Alarm was set for AM Sooooooo…my choices were maniacal laughter or hysterical tears. I chose laughter and I woke Hannah up and we got right about blood sugar, dinner and insulin in short order. As I said to some of you, our imperfect life of diabetes has begun. And neither of us died. Whew.
Randomly our educator called to confirm our pharmacy. When she asked how things were going, I giggled (man, people, I am freaking tired!) and relayed the whole deal. And she agreed — what a huge relief that things didn't go perfect. It definitely takes the heat off a bit around being rigid and perfect in the execution of things. Rest assured I've checked the alarms for 10 pm and 2 am several times and am doing my level best to just stay up til 10 because I think at this point not much would raise me from sleep.
This weekend is kind of a get our act together time — some shopping (though H was online ordering a cute medic alert bracelet by 630 this am) for groceries and getting organized. We were home 10 minutes before Hannah had the labeler out. You would not believe the number of parting gifts/books/materials/supplies we walked out of that joint with. Never mind the places we're supposed to check out online and things we should google for.
We've got a good plan for this week — appts with school, with our new doc at the diabetes clinic and then just making the adjustment back to school. And so life goes on. Cody has a trumpet competition tomorrow, needs a haircut and has indoor soccer. Hannah's got play practice and the production of Annie in a few weeks. I've got work and our regular nonsense to get back to. Hannah wants to run You Go Girl and is already asking to sign up for the diabetes run at Cheney Stadium. She wants to go to diabetes camp this summer.
Our educator said, and I believe, we've got a whole new family of diabetes peeps and lots to do/learn/enjoy. And crap, it's only 9:17….I have no idea how to stay awake for the next 43 minutes :) I said it before, I'll say it again — thanks to all of you for your notes, texts, calls, etc.
Learn.Learn.Learn: JDRF
The local chapter of Junior Diabetes Research Foundation:
Website: http://jdrfnorthwest.org/
Facebook: https://www.facebook.com/jdrfnorthwest
Website: http://jdrfnorthwest.org/
Facebook: https://www.facebook.com/jdrfnorthwest
Thursday, March 15, 2012
Wednesday, March 14, 2012
First day...
Hi All! Whoa. What a day. Had thought I might be able to get an update out mid day, but, uh, no. Crazy town.
Hannah got breakfast. At breakfast time. And I'm telling you - no one has appreciated pancakes more than that kid did this morning. Breakfast was a teaching opportunity as we learned to check blood sugar, count carbs, calculate insulin and administer it.
We got visited by what felt like every department - social work, psych, education and teams of doctors and nurses...everyone is really awesome. Education was really about what diabetes is and what we do about it. Lunch, snack and dinner (and snack again (good grief, this kid has had these nurses at her beck and call)) more learning -- and really it was up to Hannah to manage things.
She did such a great job. She's pretty much adjusted to all of the things she needs to do...just a bit of practice pulling the insulin as it's a really tiny syringe.
Funny what hindsight does. Now that she's leveled out -- there are things that clearly were because of blood sugar. Life is strange.
Tomorrow and Friday will be more of the same - more practice more learning more questions and more answers. Assuming we know enough, we will go home on Friday. If not, we'll hang til we know enough.
In theory, Han will go back to school on Tuesday. Meeting with the nurse on Monday at school. She doesn't have a full time nurse - so we have to figure out if we have an adult who is willing to help verify her insulin calculations at lunch/snack times. If not, we may be facing a school change (which would be a real nightmare) so cross your fingers. At this point, I'll probably work from home a couple days next week so I can go up at lunchtime to work through things. But who the heck knows....that is a lot of days away and a lot of learning too.
Han seems to be coming to grips with people knowing. Had lots of visitors -- and she even did her calculations and insulin shot in front of quite a crowd tonight. Everyone seems very impressed with her maturity, smarts and her adjustment to all of this.
Thanks to everyone for the kind notes, texts, facebook posts and checkins. Trying to get back as I can - thanks for your patience. During the day we're pretty much full on learning all day. Cody is hanging with Jim, as is Daisy. Han and I are in pretty good shape. Thanks for all the offers of help etc. We're doing well and don't need anything really other than what you've all already been doing.
Hannah got breakfast. At breakfast time. And I'm telling you - no one has appreciated pancakes more than that kid did this morning. Breakfast was a teaching opportunity as we learned to check blood sugar, count carbs, calculate insulin and administer it.
We got visited by what felt like every department - social work, psych, education and teams of doctors and nurses...everyone is really awesome. Education was really about what diabetes is and what we do about it. Lunch, snack and dinner (and snack again (good grief, this kid has had these nurses at her beck and call)) more learning -- and really it was up to Hannah to manage things.
She did such a great job. She's pretty much adjusted to all of the things she needs to do...just a bit of practice pulling the insulin as it's a really tiny syringe.
Funny what hindsight does. Now that she's leveled out -- there are things that clearly were because of blood sugar. Life is strange.
Tomorrow and Friday will be more of the same - more practice more learning more questions and more answers. Assuming we know enough, we will go home on Friday. If not, we'll hang til we know enough.
In theory, Han will go back to school on Tuesday. Meeting with the nurse on Monday at school. She doesn't have a full time nurse - so we have to figure out if we have an adult who is willing to help verify her insulin calculations at lunch/snack times. If not, we may be facing a school change (which would be a real nightmare) so cross your fingers. At this point, I'll probably work from home a couple days next week so I can go up at lunchtime to work through things. But who the heck knows....that is a lot of days away and a lot of learning too.
Han seems to be coming to grips with people knowing. Had lots of visitors -- and she even did her calculations and insulin shot in front of quite a crowd tonight. Everyone seems very impressed with her maturity, smarts and her adjustment to all of this.
Thanks to everyone for the kind notes, texts, facebook posts and checkins. Trying to get back as I can - thanks for your patience. During the day we're pretty much full on learning all day. Cody is hanging with Jim, as is Daisy. Han and I are in pretty good shape. Thanks for all the offers of help etc. We're doing well and don't need anything really other than what you've all already been doing.
Night One....
Late night as Hannah was REALLY hoping her blood sugar number would come downenough to eat something last night. She finally went to sleep just before midnight blood draw, having come to grips with the fact she wasn't getting a bite of anything :)
Overnight they starting introducing sugar water, so her blood spiked again. Probably good as Hannah would've lost it to know her numbers went back up from 111 to 190. She did get some ice chips -- much welcomed. Savored, in fact. 5am read had her back down to 101. 100is the magic number. But 101 is close enough for juice at 6 am and there was major joy at that news and then back to sleep. Actual cheers when juice came in the form of a popsicle.
Food at 8ish wa likely the most appreciated food ever. Game plan for today: get the blood sugar number lower. Get some food. Keep the number controlled. Hopefully at some point today we will move out ofthe PICU. Going to be a pretty full day. Diabetes educator is going to land and then it's going to get hard core. Mostly for me then for her later I think. We've got to get her off the insulin drip and then she willstart learning to and managing her own insulin.
All in all good and getting better.
Overnight they starting introducing sugar water, so her blood spiked again. Probably good as Hannah would've lost it to know her numbers went back up from 111 to 190. She did get some ice chips -- much welcomed. Savored, in fact. 5am read had her back down to 101. 100is the magic number. But 101 is close enough for juice at 6 am and there was major joy at that news and then back to sleep. Actual cheers when juice came in the form of a popsicle.
Food at 8ish wa likely the most appreciated food ever. Game plan for today: get the blood sugar number lower. Get some food. Keep the number controlled. Hopefully at some point today we will move out ofthe PICU. Going to be a pretty full day. Diabetes educator is going to land and then it's going to get hard core. Mostly for me then for her later I think. We've got to get her off the insulin drip and then she willstart learning to and managing her own insulin.
All in all good and getting better.
Tuesday, March 13, 2012
And so we begin...
3.13.12: A routine appointment with Dr. Starr to check out weight loss results in Hannah and I walking to the ER at Marybridge. We aren't given permission to go home and pack a bag...so across the street we go.
Everyone we see comments on her sweet smell...a sign of things to come.
Boo for horrible adventures in IVs. She was scared regardless, but my stomach was turned just watching. Two minute long mining adventures before they struck gold.
Yeah for Dr. Whackerly. Yeah for the lovely Mrs. Jones. Yeah for cell phone chargers. Yeah for learning we would not live a life without blizzards. Yeah for distractions.
A few hours in, up to the PICU - pediatric intensive care unit - where we would meet Susan and Will and the bald Dr. Harry. Where we would learn about the second iv and where we would thank the stars for meeting Susan, who was an IV therapist for 12 years before becoming a PICU nurse. Where Hannah would giggle and watch movies. And where she would beg for a snack, because she couldn't eat until her blood sugars come down. Where we had blood draws hourly. Did I mention the giggling? Will is crazy - and is going to be an AMAZING pediatric nurse. No visitors night one. No sleep either.
Everyone we see comments on her sweet smell...a sign of things to come.
Boo for horrible adventures in IVs. She was scared regardless, but my stomach was turned just watching. Two minute long mining adventures before they struck gold.
Yeah for Dr. Whackerly. Yeah for the lovely Mrs. Jones. Yeah for cell phone chargers. Yeah for learning we would not live a life without blizzards. Yeah for distractions.
A few hours in, up to the PICU - pediatric intensive care unit - where we would meet Susan and Will and the bald Dr. Harry. Where we would learn about the second iv and where we would thank the stars for meeting Susan, who was an IV therapist for 12 years before becoming a PICU nurse. Where Hannah would giggle and watch movies. And where she would beg for a snack, because she couldn't eat until her blood sugars come down. Where we had blood draws hourly. Did I mention the giggling? Will is crazy - and is going to be an AMAZING pediatric nurse. No visitors night one. No sleep either.
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