Boaz's Endo Check-up

    This weekend both boys have been sick. For Emory, this just meant that he was tired, coughing, had a runny nose, and had a fever. For Boaz, this meant that he had all if the above plus crazy blood sugars and high ketones. We do our best to keep his sugar down, and the ketones flushed at home but sometimes it requires a little more. After spending all of Saturday on a rollar coaster of blood sugars and ketones, we ended up in the ER.  At bedtime, Boaz's ketones were negative. Two hours later they were 4.4mmol (Large). Because they had gotten worse, we decided it was time for the ER. We also knew that if we kept him at home, we would have to wake up every hour to check the ketones, and if we missed a check it could be dangerous.  We had an awesome experience at the ER. When we got there, they took him straight back and started an IV. Boaz did really good with the IV. He cried while they out it in, but I think he was mainly sad that he couldn't see his daddy. He thought the board that they put his arm on was very silly, and would not stop poking it. They drew some blood and confirmed that he was not in DKA. So he received fluids through IV for a few hours to make sure we could flush his ketones. Once the IV was done, they took his sugar and confirmed that his ketones had flushed out. We then gave him some insulin, and signed the discharge papers.  

Today, Boaz had his three month check up with his Endocrinologist.  It went very well!  His a1c was 7.8 which is down from 8.0 and she said it was a great a1c for his age!  After his appointment, we had to go get blood work drawn to check on his thyroid. Boaz was a little sad about this, but he still took it like a champ!  So overall, his appointment went great and we were in and out in an hour! 

Our Crazy Night with Diabetes

    Last night Boaz's sugar was 578. Obviously, that was really scary. Thankfully Boaz did not have any ketones, otherwise we would have had to go the hospital to get fluids.  We gave him some insulin and checked in another hour. That time it was 408. Still too high, but at least it was coming down.  

     Now the issue with Dexcom was that it was not registering his sugar and it hadn't for three hours. After three hours, you are supposed to change the sensor if it doesn't start working again. So we got him up to change his sensor. He did so good with the sensor change, he didn't fuss at all!  I think he was just happy to be with us!  After the sensor change (and some more insulin because his sugar was still high) we headed to bed.  When we got up again the sensor had failed.  We checked his sugar (350 so more insulin) and restarted the sensor again. When we got up this morning his sensor had failed again. The problem with this sensor failing, is that it is the last one we have. So we are desperately trying to get it to work. We should have received more sensors not long ago, but we cannot find where they ended up.  So we are praying that we can find the package and get some more sensors soon. We are trusting the Lord in this! 

Type 1 Diabetes Awareness Day!

    November 14th is Type 1 Diabetes Day and we are stoked!  Be prepared to see every single detail of a day in the life of Boaz!  We are going to be posting on Instagram a live feed of every single thing we have to do! Had to look at Dexter, INSTAGRAM! Had to count carbs, INSTAGRAM!  Had to give him Insulin, INSTAGRAM!  You guys are going to get a front row seat to see into Boaz's life!  And feel free to ask tons of questions!  Also, tag @dayinthelifeofboaz and #dayinthelifeofboaz on your diabetes awareness Instagram pictures and I will be reposting those as well!*  It could be anything, from wearing blue to just saying you long for a cure!  

Follow us on Instagram! 

*Day in the Life of Boaz has the right to not repost an Instagram picture.  Inappropriate pictures or pictures with profanity will not be reposted.

Please Pray!

    Boaz had to get his first shot since we've been on the pump today.  When he woke up his sugar was 524 and he had moderate ketones.  I disconnected his pump and gave him a shot :(. His sugar is now 600 and his ketones have come down to small ketones.  I have called the doctor and we hp are waiting for a call back. Please pray that his sugar comes down and we can get rid of the ketones all together.  

We Survived Our First Stomach Bug: What We Learned

 
    On Wednesday night, we went to go check Boaz's sugar and change his Dexcom Sensor.  I like to change his sensor while he is sleeping because he usually doesn't even know it happened.  Well, this Wednesday night, he was already awake.  He wanted to be held so Josh picked him up.  Within minutes, Boaz threw up.  I knew the protocol for vomiting once- give fluids, check sugar, check ketones* ect.- but he threw up four times in a half hour!  He is in diapers so that makes checking ketones via a urine strip almost impossible.  I called the Endocrinologist and she told me to just keep an eye on him and watch for signs of ketoacidosis (lethargy, dehydration,  stomach pains*).  We are 15min from our hospital ER but I don't completely trust it, because it is not a children's hospital and we've had bad experiences before.  We are an hour away from the nearest children's hospital and that's where I planned on going.  It made me kinda nervous having such a far drive if we needed to go, but thankfully I have a great support group on Facebook with mommas all over the country with young children all with diabetes.  I was able to talk through my concerns and get some advice about whether or not to go to the ER.  We decided to wait a little while since we had Zofran in the house, and thankfully, we were able to avoid the ER.

 Here's what I learned about dealing with diabetes and stomach bugs: 

Zofran is your best friend.  If we would not have had it in the house already, we would have had to go to the ER. Vomiting in diabetes can be very dangerous.  He can lose vita carbs and fluids which can make his sugar drop dangerously low.  When he threw up the first time, his sugar was only 76.  That made me very nervous.  I was able to get some sugar in him before he threw up again and thankfully it brought him up.  The Zofran worked instantly and he did not vomit any more after that.  

Gatorade is a great sugary, replenishing drink.  His doctor said to give him sugary drinks if his sugar is below 180**.  Thankfully my sister left some clear Gatorade (I'm so glad it was clear!) in my fridge, and of course Boaz loved that!  Gatorade was the only thing I could get him to drink, so I will probably buy a bottle to keep in the pantry in case he gets sick again.  

He always needs some kind of insulin in his system.  Ok, this one I already knew, but this is the first time it has applied to us.  I lowered his Lantus (long-acting insulin) dose by 1/2u and did not give him any Humalog (rapid-acting insulin) at all.  I did these adjustments on my own because he was sick on July 4th, but I did run them by the nurse the next day and she said that was perfect.  Thankfully he did not go low or high the whole time he was sick!

So, the stomach bug was a scary experience (and did I mention Josh was sick during this too!), but I think I know exactly what to do next time.  

*These are not extensive lists.  Be sure to talk to your doctor for you own sick day routine, or if you are concerned about ketoacidosis.  

**This number is not general.  This was the specific number we were given for Boaz.  Talk to your doctor for specific numbers, ranges, and insulin doses for you.**

*****This post is not meant to take the place of your doctor or to be used for diagnosis.  It is only to be used as a resource.  If you are concerned or suspect diabetes, talk to your doctor.*****

Thankful for Dexter

In case you missed it, last weekend we received our DEXCOM G4 in the mail and we named him Dexter. We were not expecting him in the mail at all so it was very pleasant surprise! We knew having Dexter would be good for our family, but I don't think we realized how good it really would be.

Last weekend, when we received Dexter, we went to a birthday party. We hadn't heard about the party until about an hour beforehand so we rushed out the door really quickly. While we were at the party, Boaz was very distracted. I thought he had eaten enough carbs, but I guess I was wrong!

The party was an hour away, and on the way home we were watching his sugar drop on Dexter. It was 100 one minute and the next Dexter was alerting us that Boaz was below 55! If it wasn't for Dexter, we wouldn't have even known he was low because he was acting fine! We gave him icing (our best sugar bringer-upper), it didn't seem to be doing anything. Next alert was that he was LOW, meaning he was so low that Dexter couldn't measure it (which I later learned is anything below 40!). It took four tubes of icing, but we finally brought him up! So, needless to say, we are VERY thankful for Dexter!

Our Type 1 Diabetes Diagnosis Story

    A lot of diagnosis stories are similar.  The parents are not looking for signs of diabetes, so they usually go unnoticed until the child is lethargic and almost in ketosis.  Those stories are always scary and I am usually glad that it is not ours.  Boaz was diagnosed on October 6th, 2012.  We had gone to the endocrinologist about a month before and just had some routine blood work done.  Because Boaz has Down syndrome we see a lot of specialist just because.  I was shocked when the endo called and told us that Boaz was showing early signs of diabetes.  So, the same day we received those results, we headed to Savannah to get some more blood work done.  We were given a Blood Glucose meter and told to check his sugar 1 hour after bed once a week.  The first night that we did this was the night before the Buddy Walk and it was high.  I really wanted to go to the Buddy Walk, since it was our first one with Boaz and the thought of spending the day in the hospital was upsetting.  Our endo told us to check his fasting sugar in the morning and if it was over 150 that we would need to come in to see him.  We checked it the next morning and it was not over 150 so we were able to participate in all the Buddy Walk activities.  After Josh and I ate lunch (Boaz was sleeping), he woke up and we checked his sugar again.  This time it was over 250, so we headed to the hospital where he was eventually diagnosed.  So, like I said, our story is not quite the scary ketosis story.

 Well, that's what I thought anyways.  I was remembering yesterday the time that Boaz had croup.  The doctor called us to the office on a Sunday and gave Boaz a steroid shot so that we could go to Savannah the next day and see my cousins.  While we were in Savannah, Boaz threw up and was extremely lethargic.  We took him to the hospital and were eventually released with a nebulizer and sent home.  I realized yesterday that I think that's our ketosis story!  This was a few months before diagnosis and we were definitely not looking for diabetes. It is only by the grace of God that Boaz's body was producing enough insulin to bring him out of that on its own!

Diabetes Education: Sick Day

  
    Last week Boaz's sugar was all over the place.  He was having at least one low a day, which is very unusual for him, and no matter what we did, we just couldn't seem to manage it.  I took him to the doctor this week because he was throwing up at nighttime and we had ruled out every possibility as to why.  Much to my surprise, he was diagnosed with strep! He had no other symptoms that I could see.  He was wheezing, so we had to give him a breathing treatment every four hours for two days and nights (ok, so we didn't wake up to give him his 1am treatment. Whoops!).  He is on antibiotics now and getting better, but of course now Emory and I are sick!

     Anyways, sick days for diabetics are quite complicated.  We are supposed to check his ketones every diaper, and its seems that we are checking his sugar a hundred times a day!  Also, if he throws up or has large ketones we could very possibly spend a while in the hospital while Boaz is hooked up to fluids and monitored closely to make sure his sugar doesn't drop.  As I mentioned before, his sugar is all over the place.  He will be below 100 before a meal and so I will wait to give him his insulin (which, has often been a good choice, because it has kept him in range).  Yet, other times, his sugar is high, but, we are hanging in there, closely monitoring his sugar and washing lots of hands!

Myth: People with Diabetes Should Never Eat Sweets

Fact: Limiting sweets will help people with T1D keep their blood sugar under control, but with advice from their nutritionist, sweets can fit into their meal plan, just as they would for people without diabetes.There are times when sweets are a must: if the blood sugar drops too low, sweet such as icing, can help bring it up quickly and prevent further complications.

Source: JDRF

Our Scary Day in the Hospital and Our New Sick Day Routine

    Back in November we went to our neighbors house and enjoyed a bonfire and fellowship. Little did we know what our night would bring.

    We put the boys to bed as usual and Boaz was a little stuffy but not enough to be alarmed. For whatever reason, which I am sure was the providence of God, I couldn't sleep very well and was pretty much up around 1am. We needed to do our nightly blood sugar check soon so I went ahead and got Josh up. When we went in there I noticed his breathing was heavy and deep so we decided it would be a good idea to pull out the nebulizer (which we have from another hospital visit with croup) and give him a breathing treatment. When we pulled him out of his crib he awoke enough to panic. I called the pediatrician, but by that point Boaz was barely breathing. So I hung up and called 911.

    While we were waiting for the ambulance and giving him a breathing treatment he stopped breathing completely for a second. Josh was holding him and I noticed he was blankly staring. Josh hit his back and he gasped for air. That was probably one of the scariest moments of my life. When the ambulance came Boaz was breathing pretty well so they calmly loaded him and Josh into the ambulance. I loaded up Emory and put him in the car. I then frantically ran inside looking for my purse (thinking I might need my id to even see him) just to remember I had stuck in the diaper bag to avoid looking for it. I flew down 17 at around 70mph and arrived at the hospital. Boaz was fine so after waiting awhile while they observed and monitored him we headed back home at about 430am. We got back inside and left the sleeping Boaz in his car seat and set up to give him another breathing treatment. The breathing treatment woke him up and he started breathing so hard that you could see his ribs. So we headed back to the er. Josh jumped out and took Boaz in and I went and parked and followed with Emory. While I was parking the lady at the front desk was trying to play peek-a-boo with Boaz while Josh tried to get him in to see a doctor. When I got in there he was headed back into triage. We filled out all the paperwork and were put back into the same room. While in there, Boaz had a few more episodes and the nurses rushed in to give him a breathing treatment When this would happen, I would have to step out of the room because I could not physically handle the stress.

    At around 730am, I was finally able to sleep for little bit (Josh had been in and out the whole time) and around 830 or 9 we got an official room. Shortly after we got to the room our pastor and his wife came by on their way to church. While they were there, we were told that Emory was not allowed to stay in the children's hospital because of the flu going around. Reluctantly, I nursed him real quick and handed him over to the pastor and his wife. They loaded him up and took him to church. My mom came by to help us out and I slept for a while. When it was nearing time for lunch mom drove me home and I grabbed some food for Boaz and whatever else it was that we needed. While I was gone they did an RSV flush which came back negative. After talking with our pediatrician and deciding that Boaz panicked when he was unable to clear out his throat because of low muscle tone, we headed home at about 430pm. Since then, every time his nose is runny or he is coughing we give him Zyrtec and cough syrup, do a breathing treatment, rub Vicks all over him, clean out his nose, run the humidifier and check his ketones.

JDRF Walk to Cure Diabetes

  

    We are officially registered for the JDRF Walk to Cure Diabetes and we are excited about it! The walk is April 13, 2013 and it is donation only!  Registration the day of the walk starts at 8am but you can pre register at JDRF.  If you are unable to attend the walk but would still like to make a donation go to TEAM BOAZ and you can become a 'virtual walker'! The walk is going to be held at:  Jacksonville Fairgrounds 

(510 Fairgrounds Place  Jacksonville, FL). Please help us reach our goal of $150!!!      

Diagnosis

October 6, 2012 Boaz was diagnosed with type 1 diabetes.

Welcome!

Hey! I'm Boaz. I have Down syndrome and type 1 diabetes. I invite you to join me in my struggles with t1d and to help me celebrate my milestones!