Gates Home Space

Every year we get together with our neighbors to celebrate July 4th.  This year our friends Bill and Connie invited several neighbors over to their house for swimming, barbeque and playing cards.

We all had a great time together.  Even the kids (left) appeared to be having a good time.  I recently bought a new camera (Canon 40D) so I was snapping away a bunch of pictures.  This is the only picture I could find that actually shows all of our kids together.

I think Tyler was too shy to swim.  Sam, Noelle and Stevie weren't shy and dove right in.  We tried to cover Stevie's infusion site with a "waterproof" bandage, but I don't think there's really such a thing as waterproof.  You can sort of see in this picture that the bandage was coming off.

I tried (rather unsuccessfully) to take some fireworks photos with the new camera, but it was pretty hard to do not really knowing how to use it yet.

One note on the Diabetes front, the swimming Stevie did took care of much of the carbohydrates she ate (of course we still had to dose her some) and she only experienced on low (57) during the day.  Right before bed (11PM) she was 75 so we gave her about 20 carbs and some protein to help bring her up and sustain her through the night.  She woke up at a really good number -- praise God!

I just wanted to update you on Stevie. Last Monday night, she went really high in the middle of the night, but we thought it was food or growth hormones, which both can cause her to go high in the middle of the night. Well, when she woke up at 6:45am, she said she felt like she was going to throw up, so I knew that was a bad sign. I grabbed the urine ketone test strips and when I dipped one in her urine, the color immediately went to the darkest color (indicating high ketones). So, I went and got the blood ketone strips, which are more accurate and can give you an actual number. The chart says things like "below 0.6 is negative", "0.7-1.5 is small (for ketones)", etc. The last category says "if 3.0 or higher, go immediately to the ER" (it actually has it bolded like that). Stevie was 3.7!
 
We went right to the hospital and had her admitted. We brought all of her supplies to be able to change her infusion site at the hospital. (We suspected her site wasn't working.) When Charles removed the old site, sure enough, it was bent and hadn't been in her skin, so she wasn't receiving any insulin at all. One thing that really bothered me is that my biggest fear about putting Stevie on the pump was the fear of DKA (diabetic ketoacidosis), which is when ketones build up to a life-threatening level, causing coma and even death. I had asked the diabetes educator, before putting her on the pump, "what if her site comes out at night when we're all sleeping and we don't even know it?" (DKA with pump users can become life-threatening in as little as 3 hrs.) She told me "oh, don't worry, before she got to that level, she'd be up urinating more, drinking more, she'd be vomiting..." Well, Stevie didn't get up any more than usual to urinate, and didn't get up to drink at all. She only vomited after she got up at 6:45am, and by then we were already at the "go directly to the ER" stage.
 
Luckily for us, even though we were instructed to go to the ER, she wasn't in the super serious stage yet. The Dr. tested her for bicarbonates, which indicates what level of ketoacidosis they are in, and she wasn't yet in actual ketoacidosis...she just had very high ketones. But poor Stevie was put through the ringer. After feeling horrible and vomiting, we get to the ER, and she has dark circles under her eyes (I think maybe from dehydration?).

They decided to do blood tests and give her IV fluids. Well, they had an EMT trainee do it! If I had known how badly things would end up, I would have insisted on a real nurse. The girl poked around one arm for literally 5 minutes...in and out of her skin. Poor Stevie was in such pain, but she's too sweet to say anything. I could see it on her face. Then the girl announces that she has to use the other arm. Stevie looked horrified. The girl poked around that arm for another good 5 minutes, before finally getting one in. Then she didn't cap the thing off fast enough, so blood was spurting all over the place. Stevie swears she will never have another IV again. The sad thing is, now she is petrified of IVs and there's a pretty good chance she'll have to have more as life goes along. I tried to tell her that if a real nurse does it, it isn't that bad, but she is traumatized.
 
Anyhow, the good news is, as I said, although she was very ill, and did need to go to the ER for the IV fluids, she is doing well now. The IV saline and extra doses of insulin helped to flush out the ketones, and the new site worked, so the ketones didn't come back. It was pretty bad when it was all happening, but we are very thankful that she is all better now!

--Lynnanne

Lynnanne and I have been very disappointed in the accuracy of the CGMS sensor.  We have had to calibrate the sensor several times a day because it becomes inaccurate compared to her actual blood glucose levels.

During this 14 day trial that Stevie is on with the sensor, we had hoped to gain so insight into how her insulin affects her, and hopefully determine a better course of treatment for her.  Her A1C has been steadily increasing (8.4 at her last appointment), which has made us concerned for her long-term health.

We had a really strange thing happen last night at dinner.  Stevie ate some homemade tacos and we bolused her right after she finished her meal.  We usually prebolus for food because it normally takes so long for the insulin to take affect, but last night we got busy and didn't bolus until after she ate.

As anyone would expect, the carbs from the food should have started to affect her before the insulin (she had some cinnamon peaches also...high glycemic).  Normally Stevie will go high before the insulin starts to work, but last night she actually went low and we had to keep giving her carbs to keep her up.  We didn't change her I/C at all either.  That's the weird thing.  We didn't do anything at of the ordinary.  Same I/C, normal food, normal activity.  Then she goes low...what the heck!

Every day is a challenge for us with Stevie because her blood glucose is so erratic.  I just don't see us getting this under control any time soon and it is very frustrating.

Thanks for listening.

I haven't posted in awhile so I thought I'd post tonight about the CGMS that Stevie is using right now.

On Tuesday of this week, Stevie had a three month checkup at Kaiser, and they finally put her on the MiniMed Continuous Glucose Monitor that they've been promising since last November.  The purpose of her using the CGMS right now is to determine if the Novolog insulin actually has a 4 1/2 hour duration in her, and to determine if it takes longer than the normal 15 minutes for the insulin to start working.

Stevie will be on the CGMS for 14 days.  The first seven days she will use her normal Novolog; the next seven days she will use an insulin called Apidra.  We have heard from some users of Apidra that it is faster acting than Novolog (in some people) and that it's effective duration is usually around three hours.

Our goal is to switch Stevie to the Apidra if it proves to show that it will start affecting her sooner, and not affect her for the long 4 1/2 hours.  This long effective time in Stevie of the Novolog causes problems in treating her (and it is slow in affecting her at post-meal bolus so she goes high right after a meal).

If you are considering using a CGMS, email me and I will give you more details of our experiences with it.

Well, I haven't blogged for a little while because, frankly, I'm sick of computers since I have to work on one all day, everyday.

I thought I'd post a bit about recent happenings with Stevie's BG at night. We did a site change the other day before dinner and forgot to do the standard two hour BG check to make sure the site was working.  At bedtime we checked Stevie's BG and it was 584 (ouch!).  We quickly deduced that it must be the site and did a quick site change (no numbing cream...way to go Stevie!)  After a few corrections through the night, we finally were able to get her BG down to about 150.

The next night, we forgot to give Stevie her bolus after dinner and at bedtime she was in the high 400's.  We felt so bad because of what she had been through the night before.  Again, after a few corrections (and many BG checks) during the night, we were able to get her back in range.

And so goes living with Diabetes...

It's Christmas Eve and the kids are all excited to see what "Santa" has brought them this year.  We are getting ready to go to the Christmas Eve service at our church (Impact Community Church) at 5 PM and aren't really doing much of anything else today.

This year, only Stevie is home on Christmas Eve as the other kids don't get home until 11 AM Christmas morning.  This makes Christmas Eve a little boring for her because there is no one to play with, so we let her open a few small presents to help with her anticipation of Christmas morning.  On Christmas morning, we start with a fire in the fireplace and opening of presents that "Santa" brought in the stockings hung above the fireplace.  The kids love to see these empty the night before, and stuffed on Christmas morning.  They don't believe in Santa anymore (Stevie might still, not sure about that), but they still like to have what they consider the traditional Christmas morning; how they remember it when they were little.

After stockings, it's off to the living room to open their gifts.  Yes we spoil them, but we also try to instill in them the true meaning of Christmas and let them know how blessed we all are because many people at Christmas time don't even have enough food to eat, let alone presents to open.

I hope you all have a very Merry Christmas and remember the true meaning of Christmas; how our Lord and Savior Jesus Christ was born into this world for the purpose of saving you and me by sacrificing himself on the cross.

May God bless you all!

Today I took Sam (and Brandon) out for some more driver training, and we ended up in Folsom.  After she was tired of driving around, I decided we would drive over to Folsom Lake.  Normally the lake is full and beautiful, but today it was nothing like that.  We haven't had much rain this year, or snow in the mountains, so the lake is almost completely empty.

Since we were in the Jeep, I thought it would be fun to do a little 4x4'in.  We drove around the lake bed, about a half mile down into the lake (where water should be).  On our little adventure, we came across a car and a truck stuck in the sandy mud.  The guy in the truck had been trying to pull the car out of the sand when he himself became stuck.

I drove down to them to offer my help but was unable to get either of them out because the tow strap kept breaking.  I guess I should have been better prepared with a chain, since I don't have a winch on my Jeep.

Anyway, it was fun for me and the kids to get out and get a little crazy. 

Today Lynnanne and I celebrated our 10th wedding anniversary.  As in any marriage, we've had our ups and downs, good times and bad times.  But there is no one else I would rather spend my life with than her.  Lynnanne is such a caring person who gives everything of herself to me and the kids and expects nothing in return.  She is my best friend.

We went to dinner with the kids to Texas Roadhouse.  The kids love loading up on steak and ribs there.  We had a pleasant time and the kids actually got along! 

On Saturday night, Sam and I went to the Kings game against Houston. It was nice to spend some one-on-one time with her because she is usually gone at Brandon's house, or Brandon is over and she spends all her time with him.  Not that I don't want her to spend time with Brandon, Brandon is great, but it's nice once in a while to be able to spend some time with her.

Usually when we go to the Kings game, we stop and have dinner together.  This time Sam wanted subway and I wanted arena pizza, so we stopped at subway for her sandwich and then I got my pizza at the game.  Of course at half-time, we had to have ice cream! It's what we do.

We sit in box seats at the game (thanks to my work), which has waiter service. Sam ordered a water and found that it was five dollars (with tip).  I paid, of course, but she was shocked at the price.  I'm glad that she had that experience; I want her to get better at money management and to realize just how far and fast money can go.

This picture was taken with my phone. At half-time you can send in a picture to the kings web site for a chance to have it displayed on the big screen at the arena.  We got ours displayed and it was the first one selected -- cool.

Last night we went to an awards ceremony put on by JDRF.  This was to present information about the success of the recent JDRF Walk to Cure Diabetes in Sacramento.  Teams and individual walkers received awards based on how much in donations they  raised for the JDRF event.

Stevie received two awards.  The first was for raising, as a team, over $5,000 (see "Walk to Cure Diabetes Fundraiser"), and the second (Golden Sneaker Award pictured left) was for an individual effort to raise over $1,000.

I thought it was great that JDRF recognized the achievements of Stevie and all the other participants; that really says a lot about the JDRF organization.  Stevie was really excited to receive the awards and wanted me to hang the plaque in her room as soon as we got home (I was too tired to do it, but I will, I promise!)

Today I found out that Megan Rountree passed away over the weekend from a freak accident.  Megan was skateboarding with her friends on top of a 10-story parking garage and decided to take a break and sit down.  Apparently she lost her balance and fell off of the building to her death.

I did not know Megan personally.  She worked at Starbucks in Elk Grove and was the first to remember me and my "specific" drink order.  She always greeted me with a smile and called me by name.  I remember seeing her outside of Starbucks around town, and she would remember me and say hello.

Megan was excited to move to downtown Sacramento and be on her own.  From what I know of her, she was always very helpful to others and cared very much for the homeless and less fortunate.

Megan will be missed.

The past few nights have been very strange with Stevie's blood glucose (BG) numbers.  We've been running her at 140% of her normal basal insulin overnight, and then just recently backed off to 120% because her cold was not as bad.  For the last three nights we've tried going back down to normal basal because her cold is completely gone.

The weird thing is that she is not following any kind of pattern at night now (not that she ever really did).  Some nights she goes low and we can't get her numbers up and other nights, like last night, her numbers go high and we can't get them to come down.  Last night at 11 PM I gave her a correction because she was around 240.  This correction was based on a 1/300 sensitivity (1 unit will drop her 300 BG points).  I meant to give her a 0.3u correction, but instead accidentally gave her 0.4u.  I realized my mistake only after it was too late; I must have been tired.

So, knowing that this could potentially drop her more than I was comfortable with, I could not sleep (Brandon was online so I played xBox with him for a while).  Normally without food a correction will have done it's job by three hours.  I decided I would test Stevie at 12:30 AM and 1:30 AM.  By 12:30 she was dropping as expected, but by 1:30 she was on her way back up again.

This is the unpredictable nature of Diabetes!  You just don't know what is going on inside the body that one day will make it react one way, and the next day it will react completely different.  It is extremely frustrating and this is exactly why we test Stevie frequently throughout the night.

Today Stevie had an endocrinologist appointment for a 3 month checkup.  Because she has recently experiencing many high BG numbers, we were worried that her A1C was going to be much higher than the low 7's at previous appointments.

Stevie's 30 day average BG was 185 and her A1C was 7.8 (not as high as we thought it was going to be, but higher than we wanted, of course).

Stevie has a long insulin curve of 4 to 4 1/2 hours, meaning it starts out slower than normal, and ends stronger than normal.  This makes it hard to keep her BG at a reasonable level soon after she eats, even if we pre-bolus the insulin.  We've tried using the dual-wave bolus, but without much success (we're still working on this).

We found out today that her endo wants to put her on a Continuous Glucose Monitor (CGM).  This is a device that will connect to Stevie's tummy (see picture) and wirelessly transmit her BG information to her insulin pump (MiniMed 722).

We are very excited about this.  It will only be temporary that she will be using the CGM, but it should give us much better information about her insulin curve.

The main purpose of going on the CGM is to determine if we need to switch from Novolog to Apidra (insulin).  We are trying to determine if the Novolog is not working as effectively for Stevie as it should be, since it seems to affect her more at the tail end of the curve rather than at the beginning, as it should.  So, we will do two six day trials on the CGM; one using Novolog and the other using Apidra.  Now Apidra hasn't been officially approved for pediatric use (as of today), but we have found that other doctors are using this for their pediatric patients, so we requested that Stevie be allowed to try it (we've also tried Humalog without success).

If you are using a CGM we would love to hear from you to let us know how it is going, or went.  We will be starting this in December.  Please email us your CGM story/info to gateshome@hotmail.com . (Or you can leave your comments here.)

With the constant attention required to care for our daughter, Lynnanne and I get so consumed with her care that we forget to care for each other, and give one another the attention each needs.

This attention is required to maintain a loving and close relationship.  Without it, we can start to feel alone while we battle the daily needs of Diabetes.  We battle it together, but without the intimacy of a loving couple.  It becomes work rather than loving care.

Ever since Stevie was diagnosed, Lynnanne and I have not spent any quality time together as a couple.  We do not have the confidence in others to care for Stevie, so we take it upon ourselves to do everything for her, and thus creating a condition where we will never be apart from her.

This of course creates a condition in our marriage where we never have "alone" time.  I'm not talking about sex either; I'm talking about the "alone" time that couples need to sit down and talk to each other about their day, laugh with each other about their day, and to just keep "knowing" each other, even though they may have been together forever.

We recently entered into a couples Bible study.  The host family is awesome and provides childcare at their house where we have the study.  We can go study God's Word, fellowship with other couples, and feel comfortable that Stevie is just in the other room if she needs us.

This time together has been extremely important to our marriage and being a couple.

We have learned to speak each other's "love language" and to focus more on the needs of one another every day.  The result has been a more fulfilling relationship, better coordinated care for our daughter, and definitely better "alone" time.

If you are a couple struggling with this same issue, I want to recommend a book for you to read.  The book is "The Five Love Languages", by Dr. Gary Chapman.

Diabetes in Children and Adolescents

The theme of this year's World Diabetes Day campaign is Diabetes in Children  and Adolescents.Diabetes is one of the most common chronic diseases of childhood. It can strike children at any age, including pre-school children and even toddlers. Yet diabetes in children is often diagnosed late, when the child has diabetic ketoacidosis (DKA), or it is misdiagnosed completely. In many parts of the world, insulin, the main life-saving medication that children with diabetes need to survive, is not available (or is available but remains inaccessible for reasons of economy, geography or constraints on supply). As a consequence, many children die of diabetes, particularly in low and middle-income countries. Those closest to the child - family, school staff, family doctor - may not be aware of the ominous signs. The World Diabetes Day 2007 and 2008 campaigns set out to challenge this and firmly establish the message that ‘no child should die of diabetes'.

Read the full story...