October 26, 2012

A Very Unlikely Shout Out

Ally had to have knee surgery yesterday.  The poor girl has gone through so much in her short life.  Sometimes I feel like its just so unfair.  It makes me feel better to blame diabetes for the crappy stuff that happens.  Only this time, the orthopedic surgeon tells us that this is not related to her diabetes or her JIA (Juvenile Idiopathic Arthritis).  He said this is a normal person problem!  Gee, how did she get so lucky to have a normal person problem too??

 This is a picture of the MRI.  You can see a piece of cartilage & small piece of bone that have broken off bottom of femur bone. (It looks like a half moon shape, located in middle of picture.)
After meeting with the surgeon, I felt comfortable and even though I wished that Ally did not have to go through this procedure, I felt good that he could fix it.

My anxiety was with the whole idea of putting her under for the 2 hour surgery.  Maybe anxiety isn't the right word...panic may be better.  I almost couldn't breathe thinking about her being away from us for 3-4 hours, under anesthesia.  How could I be sure that someone was monitoring her diabetes during that time?  You might say, well she WAS in a hospital, surrounded by doctors and nurses right?  But  being a doctor or a nurse does not mean that you understand how to manage diabetes.   

The surgeon and his team assured me that they would work closely with our diabetes team and that they would be monitoring her blood sugars the entire time that she was away from us.

I spoke with our endo and nurses in the diabetes clinic several times before the big surgery day.  They instructed us to keep her BG in range as much as possible overnight and leading into surgery.  They wanted to keep her basal rate the same, but add extra BG checks to  make sure she was holding steady.  We had a pretty good plan in place, but most of you know how hard it is to "plan" a blood sugar number.  Yeah, nearly impossible! 

Ally could not eat after 3 am and could have clear liquids only until 7 am.  Since her basal rate increases at 6 am, I was mostly worried about her going low and having to treat it.  If she were to need juice or something to treat a low blood sugar, they would have to cancel surgery.  So I set a temp basal decrease for a couple of hours beginning at 6 am. 

Once she got her IV they would be able to pump glucose through that if she were low...I just had to get her to that point.   I had a goal of a BG between 150-200 when we left for the hospital.  This is higher than her normal range, but I felt better giving myself a little cushion because I could give her insulin but I wouldn't be able to give her sugar if she were low.  I knew they would be checking her...and they did every hour, or more if they thought she was dropping. I also guessed that the stress of the surgery would make her bg climb. 

Leaving our house, BG 165.  Going into surgery, BG 156.  Three hours later, coming out of surgery, BG 155.  The flat line of her CGM overnight was beautiful!

It may sound as though I am tooting our own horn here...but I'm really giving a shout out to the big D for cooperating! 

I can't even believe that I'm saying this out loud (and Lora, you warned me, so I'm giving you permission to say I told you so, when this comes back to bite me!).  D actually cooperated!  I know, that may be something you have never heard before.  I can't even believe it myself.

We were even blessed with a perfect CGM sensor that has been dead on!

Surgery went well.  Ok, except for the going to sleep part.  She freaked out a little...or a lot!  She was nervous and kept saying that she wasn't ready.  Then they let her put the mask on, she tried, but chickened out and pulled it off.  Then she started screaming that she felt low (I'm sure she inhaled just enough gas to make her feel that way).  Then when they had to force the mask on, she screamed HELP!  HELP! until she fell asleep.  It was traumatic.  I prayed that she wouldn't remember it and at first it seemed that she hadn't.  When she woke up she said, "I think I worried for nothing."  and "I'm really glad that they let me hold the mask myself.  I don't even remember falling asleep."  I felt a huge relief that she had not remembered that awful moment and wished there was a way for me to forget it.  Then today she said that when she tells people about the going to sleep part, she will leave out the part where she screamed HELP!  :(  I guess she remembered after all :(

Ally is doing well today.  She is having a moderate amount of pain, but that was to be expected.  She will not be able to bear any weight on her leg for 6 weeks.  As much fun as she thought the crutches were going to be, I think we are going to be spending a lot of time on this couch!



I am going to take advantage of this opportunity to get some extra snuggles for sure!  So happy that this week is over and so very proud of my brave girl!  She wrote me this note from the couch today between naps...

"Thanks (for telling me I'm brave)! You Rock!"


No sweet girl, YOU ROCK!!


Photobucket

October 1, 2012

Highlights


 
 
(No D day means no FB, Twitter, Blogs or the like that mention anything surrounding that D word.)
 
 
 Highlights of our weekend...on a No-D day!



Showing the girls the inside of the horseshoe at
the Ohio State University...GO BUCKEYES!



 
Converting Flat Stanley
(who is visiting us all the way from the home of the Candy Hearts family)
into a BUCKEYE!




Observing the beautiful fall foilage!
 

 
 
Celebrating my dad's 66th Birthday!  Happy Birthday Dad!


  1. Photobucket

September 11, 2012

DSMA Parents Talk & Glucagon App


Have you been tuning in to DSMA Live Parents Talk on BlogTalkRadio ?  If not, you should.  Lorraine from This is Caleb and Bennet from Your Diabetes May Vary are hosting the show every other Monday at 9PM EST.  For more information visit http://dsmalive.com/



While listening to the show last night, I learned that there is a FREE Lilly Glucagon App for iphone, ipad, ipod, etc. 

 
 
We all hope that we will never need to use the glucagon.  However, reality is that we might.  I downloaded this app today and have been playing around with it.  I think its great!
 
 
It is a good refresher for those of us who were trained back in the hospital at diagnosis years ago, but thankfully have never had to use it.  It is also a great tool for training family members, childcare personnel, friends and school staff members.
 
The app has a Tutorial to watch and also a practice section. In Practice Injection Steps, you interactively go through each step. When you finish the practice steps, it asks you if you would like a reminder to practice these steps again in 3 months. How cool is that?
 
 
But wait, there is more!  It also has a Manage My Kits section, where you can enter the location and expiration dates of each of your glucagon kits.  And yep, you can set reminders here too so that you will be notified when one of your kits is expiring. 
 
 
 
Along with these cool features, the app also contains basic glucagon information, emergency instructions, and safety information.  I have already shared the link to this app with our school nurse and my familly members.  It should be a really helpful training tool.  Thanks Lilly!  And Thanks to DSMA Live Parents Talk for sharing this great tool!

 I encourage you to tune in to DSMA Live Parents Talk on Monday, September 24 at 9PM EST.  Hallie from The Princess and The Pump will be the guest!  Can't wait!


Photobucket

August 31, 2012

It Takes an Army

If you read my blog, I'm sure that you know my friend Meri who blogs at Our Diabetic Life.  She is a beautiful person, with a beautiful family, fighting her husband's cancer with everything they have.  Please read her update below and consider joining us in prayer this Sunday.  We need an army!
 
Dear Friends,

We received the news last week that our most recent brain scan shows a new army of tumors.   Ryan no longer qualifies for radiation, or any trials.   We will begin our last med option tomorrow morning.   Urvoy is a medication given once every three weeks for 12 weeks.   The medicine works on a small number of patients and takes a good 5 to 6 weeks to make any improvement.   As things are progressing fast and furious, that is a very scary timeframe for us.   Despite the odds, Ryan remains convinced that he will be ok.   More than ever we need your prayers, as Ryan's body is so very weak right now.   Our family is setting aside this Sunday as a day of prayer and fasting on Ryan's behalf.   If you feel as though you would like to join us, we would sincerely appreciate each and every prayer offered.   Thank you so much for all the good thoughts, love and prayers you have directed towards our family.   It is now time to ramp up our prayers again.   An army of believers has to be stronger than cancer.   It just has to be.    
Much love ~Meri


With this update from Meri, we (the SFM Admin) have decided to begin raising funds once again for this family.  Please don't feel obligated, but if you can, please donate to the Schuhmacher family to help with continuing medical expenses.  Any amount is appreciated.  We have the goal set at $15,000 and a 2 week timeline.  This will allow the money to get to Meri and Ryan as quickly as possible.

Continuing prayers are also VERY much appreciated.

Here is the link to donate if you can, and please feel free to share with your friends and family: http://www.giveforward.com/schuhmacherfamilymiracle2
 

Thank you ♥


Photobucket

July 29, 2012

A Very Special Thank You

Yesterday was a special day.  We were lucky enough to celebrate three special occasions in one day. First, it was Jessi's 7th birthday!  While we are planning her party for another day, we did celebrate with chocolate chip pancakes for breakfast and a couple of gifts to open!


The second event was the wedding of a beautiful young lady who I babysat for when she was a little girl.  (So far, both were special events, although both have made me feel old!)

The third of these special events was the wedding of my cousin, Joe, to his beautiful bride Miranda.  I have to share with you their most special way of saying "Thank you".

(Please excuse the plain photo.  I'm so mad at myself for not taking a picture of this note card while it was sitting on the table at the reception.  The centerpieces were beautiful and this shimmering card was sitting in front of them, reflecting the glow of the candles.)


Isn't that the coolest thing ever?  Instead of spending money on trinkets for the guests to take home, they donated the money that they would have spent to JDRF in honor of Ally.  It made me cry, but it made my heart smile too.  What a completely selfless act, on a day that should be all about the newlyweds!

Ally told Miranda "thank you" and her response was, "Thank you for being so strong in dealing with your diabetes."  She also told me that she hoped that other guests at the wedding would read it and think about making a donation as well.

A few people around the DOC have been writing about the days when diabetes just makes us feel alone.  We get that.  But today we feel the opposite.  What a beautiful thing for our family to advocate for Ally and for her future through their support of JDRF!

So, thank you to Joe & Miranda, for making us feel special on your special day!

Photobucket

July 24, 2012

Diabetes Can't Stop Me!

Ally's thoughts on Friends For Life:

If you know anyone with diabetes, you should go to FFL!

It's so much fun!

If you don't have diabetes, you can learn more about it and how to take care of people with diabetes.

You get to meet other people who understand everything you do. Everybody is checking their blood sugar at the same time. I didn't have to be the only one.

Sugar, Ally and Brianna doing a group BG check.

If you do have diabetes, you can have more sleepovers because people understand how to take care of kids like me with D! 

(There may have been a FFL sleepover in our hotel room :)  Stay tuned for the scoop on that!)

It is one of the only places you can go where people don't ask you what is that on your arm?  Or ask why you go to the nurse all the time.  Or say things like, 'Ummm...you have a phone in school.  I'm gonna tell!'

Friends for Life is awesome!!  It makes you feel like diabetes isn't that bad after all.  Now I know that I can still do anything that I want even though I have diabetes.




As soon as we got back home from our trip to Orlando, Ally made this sign for her bedroom. 

I want to say thank you to all of the People With Diabetes (PWDs) for being an inspiration to my daughter.  You taught her that...

"Diabetes Can't Stop Me!  You can do anything even with diabetes."

So thank you to Ironman Triathlete Jay Hewitt, NFL Player Kendall Simmons, and Indy Car Driver Charlie Kimball and thank you to Novo Nordisk for sponsoring their participation.  Thank you to Snow-boarding World Cup competitor Mike Fisher and to LifeScan, Inc. for sponsoring his participation at FFL.  Thank you to Phil Southerland and other members of Team Type 1 (and to Sanofi-Aventis for their sponsorship).  It was a bonus for us to pass members of Team Type 1 on the road as we traveled home from the conference.



Thank you to Crystal Bowersox! My kids are walking around singing "Live Life First!" 




Thank you to Kim for showing our kids that You Can Do This!



Thank you to Lee Ann for encouraging our kids creativity through Diabetes Art!





Thank you to Kelly for helping the kids feel the meaning of SAME! 
And thanks for just plain having fun with us!  We Red heart you!



More than anything else, this is why we went to FFL!  I agree with Ally, it was awesome!

Photobucket

July 23, 2012

Friends For Life: The Connection




I feel so blessed that our family was able to make the trip to Orlando this summer for the Friends For Life conference.  It was our first FFL experience - as you can tell by our "First Timer" ribbons!


I sat in the ballroom, overwhelmed by the beautiful people that filled the room, listening to Tom Karlya's keynote speech.  I was thinking about how I wished everyone in the diabetes community could experience this atmosphere.  My eyes were bouncing from one green bracelet to another.  Earlier Ally had commented to me about all the green bracelets...she couldn't believe that so many people had diabetes like her. 

The green bracelet of belonging for the Type 1s. 
The orange bracelet of belonging for the people that love someone with Type 1.

Tom Karlya said that support is just as important as knowledge.  He said, "We need to work together to move forward." 

I told myself that I needed to carve out the time to blog.  I'm sure that I've said before that I blog for different reasons.  I blog to vent (it is therapy you know!).  I blog to educate.  And maybe more than anything else, I blog for the connection.

Connecting with other parents of children with diabetes - it is something so amazing that I can't even put it into words.  Well maybe one - SAME.  My orange bracelet gave me the same sense of belonging that the green bracelet gave Ally.

Photobucket

July 22, 2012

Eeny Meeny Miny Mo! Catch a meter by its toe!

One of the wonderful experiences at the Friends For Life conference was the exhibit hall.  We enjoyed chatting with folks from Medtronic, OmniPod, Eli Lilly & Co., LifeScan, Roche, Animas, Tandem Diabetes, Novo Nordisk, Sanofi-Aventis, Sugar Medical Supply, Skidaddle Bags, Glooko, Team Type 1 and the "You Can Do This" group.  The list goes on and on.

THE purpose of these vendors is to share information with us - from insulin pumps to the insulin that goes in them;  from glucose meters to the fast acting carb of choice for treating low blood sugar; from the products that help live life better to the people encouraging those with T1 to live life to the fullest!

It was great to see what's available out there! 

However, I walked out of that exhibit hall feeling dizzy as if I had just stepped off of a spinning amusement park ride.  The culprit - blood glucose meters!  Oh the glucose meters!  There are some really cool features available on these meters.  It seemed as though every booth had a "new" meter to show us.  I was impressed by several of them.

Here are a couple that caught my eye, with descriptions from dLife's Gadgets & Gizmos article:

http://www.bayercontourusb.us

Bayer's Contour USB meter which plugs directly into the USB port of the latest PCs and Macs so that you can download blood sugar data, and get analysis and trends to share with your healthcare professional. Bayer's Contour USB Blood Glucose Monitor is currently compatible with Windows 7, Windows XP (SP3) and Vista (SP2) as well as Mac OS X 10.5.7 and 10.5.8 (Intel 64 bit processors)




Medtronic reps explained that this meter will link with Ally's Medtronic Revel insulin pump, a feature that we have come to depend on with our current One Touch Meter.  The USB port on the end will also allow us to download right to our CareLink software which we use for downloading pump and CGM data.  Love that it will all be contained in one place so that I don't have to search for the little CareLink USB when I want to look over Ally's data.

www.telcare.com

TelCare's 3G blood glucose meter uploads your blood sugar data to a server via a 3G connection. On the TelCare server, you can manage your data, make graphs and charts, and communicate with your healthcare providers. You can also re-order supplies directly through the meter. There are no monthly charges for the use of 3G. TelCare also produces an iPhone app that allows you to track your blood glucose readings over time.


The feature about the Telcare BGM that is most appealing to me is that through cellular technology, when Ally checks her BG, the readings will automatically transmit to my phone.  LOVE LOVE this idea!


http://www.ibgstar.us/

The iBGstar Diabetes Manager app for iPhone or iPad is designed for use with the iBGStar Meter. Connect your meter to your Apple device to download test results, store and manage data, review trends, and share your information with your doctors.

This meter is something that we may be interested in down the line.  At this point, Ally does not have an iPhone so it doesn't seem to meet our current needs.  We do love Apple products though, so I like that data may be downloaded to these devices.




The One Touch Verio IQ System has PatternAlert™ Technology, which detects patterns of highs and lows—and alerts you, right on screen, when it finds one.

We received a complimentary One Touch Verio IQ at the conference, so this one I can actually speak about from a little experience.  At first glance, it looks cool!  (That was Ally's reason for wanting to try it.) 

The pattern alert is great!  I keep a log book as well as download her cgm/pump data often though, so this is not a huge benefit to me at this time.  It may, however, be a good thing for Ally as she learns bit by bit about managing her own diabetes.  Kind of a beginning step to recognizing patterns and learning when adjustments need to be made.  The light on the top of the meter is awesome!  The verdict is still out about the rechargeable battery.  It might be nice not to have to buy batteries, however we don't have to replace them that often.  She has been using the Verio for 90% of her BG checks the past two weeks and just today we had to recharge the battery.  My concern with using this meter at school is that who would remember to recharge it?  Another drawback for us is that it doesn't link to her pump.

But what we have grown to love most about the Verio is that the test strips use a lot less blood than the One Touch Blue strips that we had been using.  This alone is the reason that we are giving this meter a go for a while!   

In my ideal world, I could get two different kinds of strips each month.  We would use one kind of meter while she is at school and a different one when she is home.  The problem with that would be that our data would be disconnected.  In the end, each of these glucose meters has bells and whistles that I'd love to see in a meter.  We just have to prioritize our needs at this time.

So, I guess for now its Eeny Meeny Miny Mo!


Photobucket

LinkWithin

Related Posts Plugin for WordPress, Blogger...