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Loss of Control – How Do We Regain It

I urge you to read the link I have attached.  Although it is from the Canadian Diabetes Association, I have read many links which involve Diabetes Associations that exist around the globe.  It seems on paper the protocol is in place if the school board or district is agreeable to implement & support.  Every parent past & present that has a child with Type 1 fight to keep their child safe at school.  The fact that our children are not viewed as ‘in need’ of special care in their daily management of diabetes at school is preposterous.  Every diabetes organization is posting guidelines & lobbying for change but it is happening too slow.  While school boards fight to keep their budgets or manage with less, our children living with diabetes’ risks of adverse events occurring is higher.

Examples to support the lack of guidelines & the situations Kurtis met as a result:

1.  In Grade 5 his class is in a portable.  Soon after the school year starts, Kurtis comes home to tell me during class that day he feels like he is having a low blood sugar.  He tells his teacher.  He tests & confirms.  The teacher sends him by himself out from the portable into the school to the office to get a juice box.  He tells me he is scared.  Two issues:  there are juice boxes in the classroom AND most important, she sends my scared son BY HIMSELF outside to enter the school & walk up a long hall & a set of stairs to treat himself for a low blood sugar.  What if he didn’t make it?

2.  In this same class, it is the middle of winter.  A similar event occurs.

3.  I discuss with the teacher the concern.  She explains she can not expect a student to go with him as they need to be in the class to learn.  She offers she can not leave the class to go with him & leave them on their own.

4.  I discuss my concerns with the principal.  She meets with the teacher & enforces a student needs to go with Kurtis when going to the office for a low…IF….there are NO juice boxes in the classroom.

5.  At one point, Kurtis has a severe low at school.  I meet with the principal & discuss options of having Glucagon for treatment if he becomes unable to take treatment orally.  She informs me the school board will not allow her or the staff to inject Glucagon.  I ask if children that have severe anaphylaxis to bee’s & peanuts have Epi-Pen’s at school?  She says “yes”.  I ask if the staff are allowed to inject the Epi-Pen if such an event occurs. She says “yes”.  I point out to her that both events need life saving injection of a drug.  She counters that she can call an ambulance with Kurtis & by the time they get to the school he will be okay.  I was furious.  How do you educate someone who is such an imbecile?  So stuck on the rules that they won’t consider a child’s life could be at jeopardy?

How did I deal with this?  I made myself on-call regardless whether I was sleeping from a night shift.  If I was working a 12-hour day, I was fortunate my parents were on stand-by.  I made it clear that the school was not to call 911 first (as the school was in the country), they call me.  I knew I could make it to the school quicker than the ambulance could.

Thankfully, with regards to his diabetes, nothing serious happened.

I am not sure how to make an impact to sway school boards to start a standardized protocol that allows for a budget for help in overseeing glucose testing, injecting & bolus of insulin, eating the correct food & bringing attention to the proper person the needs of a child with Type 1.  I do suggest lobbying & pressure by our local diabetes associations as well as supporting them in their campaign is instrumental.  Many voices are louder than one.  I urge you to take part.

Why?!?

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Why?!?

Did you ever go to bed with a normal or near normal sugar but wake up the next morning high? You increase your insulin or talk to the doctor about it & he raises your oral diabetes medication & it continues to go high. Why?!? What is going on? Among the many frustrations to experience, what appears a simple fix becomes a complex mystery.

Kurtis is in Grade 7. It is about late September. During that time, as most kids are, he is very active, back to school & still not ready to harness the energy he had from summer holidays. He plays football with his friends at every recess. He plays hockey in his local league. At that time he is in power skating to ante up his hockey skills for the upcoming season, with the primary reason to keep him active. When he isn’t at hockey after school he is outside jumping on the trampoline or catching frogs. Aside from sitting in a classroom his days are full of activity.

During that time Kurtis is on insulin pump therapy. It is very easy to manage him on this. Predicting trends in blood sugars is easier than injections. Between decreasing basal rates & temporary basal rates, I feel I am in control of his active lifestyle.

Within that time, there is a period of weeks where Kurtis is going to bed within the safe target for his age but waking up high. I automatically assume he is growing & needs more insulin. What does any parent do? Increase the overnight dose.

With Kurtis being on an insulin pump, I don’t feel the need to set my alarm every night to check him. If there are days where he is having multiple lows, I set my alarm to make sure he doesn’t have more through the night. Otherwise, I feel confident sending him to bed at a target blood sugar, he will wake up within a reasonable target in the morning.

One morning this is not the case.

At that time I worked for Novo Nordisk. I put in an average of 50-60 hours a week. I did a lot of driving. Working as a full-time Mom in a sales career, living & managing my own Type 1 diabetes & raising a son with Type 1 diabetes & keeping a balance for my daughter was very challenging.

This particular morning my alarm goes off. I am exhausted. As I hit the alarm, I say to myself, the kids need to do a few things before I get up with them anyway, it’ll be okay. The alarm goes off one last time. My feet hit the floor. As I stumble out of my bedroom into the Great Room where Cayla sits at the Breakfast Bar eating her breakfast.  I hear Kurtis’ alarm going off. I ask Cayla if Kurtis is up. I think to myself, “I don’t hear the shower?”. She responds, “It’s been going off for a while now, he won’t shut it off, he won’t get up.”

My heart starts to pound. My concern is overwhelming. At this point, Kurtis is not at the stage to sleep deep enough through an alarm.

Kurtis’ bedroom is at the end of the hall. His bunk bed is against the wall directly in front me. As I rush in the room, I see his back facing me. The alarm is still going off. I know something is not right.

I go over to him. He is a funny colour. My heart is pounding. I shake him gently & say “Buddy” (his nickname). His arm flops over & I see his face. His eyes are rolled back in his head & there is a lot of saliva coming from his mouth. There is not a moan or a groan. He is lifeless. There is a pool of vomit in his bed. My body floods with a warm rush, a pulse so strong I want to scream. I think my baby is dead. It seems so cold, but I check his pulse. It is barely palpable & fast. He is cold. I scream. I scream so loud. I yell at Cayla to get her father. I don’t have to explain. She can tell by my voice & what she is witnessing. I keep him on his side. His father rushes in and picks him up. He holds him on his lap while I run to grab the Glucagon. My hands are shaking so bad I can barely get the needle into the vial to inject the saline. What seems like forever, I pull the syringe out of the vial & plunge it into Kurtis’ leg. He’s not moving, he’s not talking, his eyes aren’t open. I pray, please God, please, I can’t lose my baby. I am trying to keep up my composure for Cayla. She is apologizing to me. She feels bad she didn’t check on him. I say “It’s okay honey, it’s okay.” as I try not to cry. Who do I call first…Kurtis’ Diabetes Educator’s home, not 911, but her home. Why? I don’t know to this day. At that point I have lost all sense. When she answers I cry to her “Shay, he won’t wake up, how long does it take?” My hands are shaking so bad I can barely keep the phone by my ear to talk or listen. She asks me, “Have you called 911?”. I feel so stupid. Me, a nurse, who has worked in critical care. I hang up & call 911. We live in the country. It takes 30 minutes for them to arrive. About this time, Kurtis is beginning to make sounds. He is trying to get on his feet but doesn’t have the strength. The lights are on but nobody’s home. Shortly after, Kurtis is hospitalized. It takes almost a day before he becomes aware of his surroundings & his Mom. I knew my Kurtis was back when he opened his eyes after who knows how many times confused & unaware & says “I’m hungry”. I knew by baby was OK!

There is not a day that goes by that I don’t thank God that He left him here with me. Days, weeks, months & years later, I tell Kurtis that God kept him here for a reason. He has a purpose. As we all do living with diabetes (& those who don’t!). Weeks & months after I would be driving to a city in my territory to call on customers & I would visualize Kurtis lying in his bed, looking dead. I burst into sobs.

My discovery with what happened to Kurtis is that he wasn’t high all night. He was experiencing the Somogyi Effect. He was going low in the night due to all of his activity but his liver was overcompensating giving him such a surge of sugar to compensate he woke up high in the morning. That day, his liver had no more sugar stores left to save him from what happened.

I share this very emotional story with you for a few reasons.

1. Don’t assume. Nothing, not even an insulin pump is predictable with diabetes. When I worked in the Intensive Care Unit, I was taught to look at the patient not the the machine. (Although, don’t override the pump all the time that is telling you changes on the pump need to be made)

2. Set your alarm for 3 am & test your child/teens sugars for 3 nights.  It’s like fishing…you’re trying to ‘catch’ a low.

3.   If the sugar is high in the morning don’t assume it’s because he/she is high all night. If your child is on injections or a pump that does not give the technology to offer Continuous Glucose Monitoring to decide what’s happening, there is technology available that allows your child to go live with their sugars for 6 days that your diabetes clinic may offer which will help you & your diabetes team to find out what’s going on over night 24 hours a day for 6 days.

4. When kids are as active as I described with Kurtis, compensate for that. Whether your diabetes team has advised extra carbs & protein at bed or decreasing overnight insulin.

5. Journals rock!! As busy parents working long hours & being all that for our kids, we lose track. But, we don’t realize it. We think we are status quo, but eventually something has to give. A journal will tell you what’s really going on. It’s the story you think you know but  because I’ve been there, you really don’t.

I share my experiences because I learn from them & they are in the past. I write these blogs because if I can save one child & one parent from going through what I did, I have done what I have set out to do.

March Break Travel Tips & Tricks

For those anxiously awaiting for March break…are you travelling away from home? How do you plan for travelling with diabetes?

Since 50% of our family had Type 1 diabetes, back in the day when my kids had March break, to keep organized and sane I created a standard packing list which also included everything imaginable for diabetes supplies. If we were going away for 1 week, I would pack double the supplies.

I gave both of my kids their own packing list. Kurtis’ list also included the diabetes supplies he needed. I would encourage him to pack it himself. I reviewed the list with him to make sure it was all in his suitcase and carry on, if flying.

A few tips:

1. If on an insulin pump, call the company and ask for a back up pump about 2 weeks earlier (or find out from the company how much notice they need)

2. If on an insulin pump, bring enough insulin, syringes or pen and pen tips to sustain you or your child for the entire vacation IF by chance your pump malfunctions and you have to go back on multiple insulin injections.

3. Make sure all medication are in its original containers.

4. Have your family doctor or diabetes specialist write a letter stating you have diabetes and the specific list of supplies you will carry with you. (Kurtis & I have been pulled over by Customs. We have had to pull the list out and go through the bag taking inventory with list in hand.)

5. Wear Medical Identification such as a bracelet, necklace or tattoo.

6. Pack a water proof container where sugar tablets can be placed for any activity that they may come in contact with water.

7. If packing insulin, make sure to keep the insulin between 2-8C when in transit. It can be exposed to temperatures between 15-25C for up to 28 days. The best product to use for travel to keep insulin safe to use is a http://www.frioinsulincoolingcase.com

8. Buy Travel Medical Insurance

9. Pack a Glucagon kit.

10. NEVER leave your diabetes supplies on the beach. (I had a young client I sold an insulin pump to just before he and his family went on vacation. Carefully folding his pump in his towel on the beach, upon his return from playing in the water to hook back up he realized it was gone!)

11. Bring an empty water bottle if you use needles. You can place them in the water bottle and safely bring them home for appropriate disposal. Make sure to put the bottle with sharps in your check in not the carry on.

12. Make copies of travel documents, doctors letter, and contact information. Give it to one or more of your family members and/or friends if you lose any of this information.

If you would like an example template of the packing list I have used and still use, let me know, I will post it.