What a diabetes emergency is like…

It happens so quick, all is well one minute and the next Frankie is passed out on the floor, incoherent, arms flapping, a glassy look in his half closed eyes. Severe hypoglycemia-severe low blood glucose level.

Scary as hell, but we try to stay calm. We have to stay calm. We have done this before—I turn Frankie on his side, Dad and Rachel run for glucagon, a frosting tube and juice. We all are praying. My niece is here—God knows what she is thinking—besides ‘Holy Crap!’ We start with frosting—between his cheek and gums—rub it in—get the lining of his mouth to absorb it quick. We do not care about the meter—we know what low glucose looks like—this is it—we do not need a number. We remember to suspend his base insulin coming from his pump. We watch, wait, pray.

Minutes pass like hours.

Frankie starts to come back. He looks at me like he doesn’t know me—and for a few seconds he doesn’t. Then come the tears, and through them, a forced to drink juice box-dribbling down his chin along with the tears.  We avoided the need for glucagon and 911. We all hate diabetes—we hate it with a vengeance right now- fighting to keep our son. 

Dad picks Frankie up, and carries him to the sofa, stays by Frankie’s side. Frankie is talking, making sense, but is still shaky.  Dad takes his number-68—it’s coming up-but we must stay on guard. Frankie reluctantly downs another juice box. I am in the kitchen—getting a protein snack—to follow up all those fast acting sugars. He needs protein to level out. I am thinking about our Certified Diabetes Educator, Michelle Dart. We know what to do-during and after—because of her. I am still praying and thanking God for Michelle & her classes.

Frankie levels out, we won this battle-but Frankie pays a price. He gets a massive headache for his troubles and the next 24-48 hours his body will be adjusting, and he will have to check his number more—and be extra vigilant. Frankie is scared to go to sleep-but Mom & Dad will get up three times in the night—because one check will not be enough after this.  He trusts us—to keep him safe and alive. We honor that trust.

Rachel’s eyes are huge and brimming with tears. “He’s okay, He’s okay.” We hug her and give assurance. As parents, we have to suck it in, hold it together—so the kids will believe. Mom and Dad will cry later when everyone is in bed.

This is what diabetes is. Frankie paying the price for having fun. Rachel feeling the fear that living with this disease brings. Diabetes payback for a great time at the apple farm, running around with friends- payback for being a kid. We know from experience that a lot of running around, sports, fun—Frankie will go low hours after the events. We prepare for this—and were on it yesterday. 15 minutes before passing out Frankie’s number was 135. Perfect, fantastic-but  diabetes can turn on a dime—even with vigilance.  It laughs at us, laughs at our positive attitude, the plans we make despite diabetes, and diabetes taunts us—”give up, give up! You can’t win against me!”

We made it through the night. My kids will get up and go to school. I will send the teacher an email about last night—so she can keep an extra eye on Frankie today. Mom and Dad will go to work. All of us will fake it today—smile like we haven’t a care in the world and pretend we didn’t come close to losing Frankie last night. What we won’t do is give up our fight against this damn disease. 

Know thy self, know thy enemy. A thousand battles, a thousand victories.
Sun Tzu 

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We want to take your child BUT…access still denied

I was hoping, beyond hope, that the answer the T1D mom received from the facility about her Type 1 diabetic child being denied access to their care program was “Oops, our new, untrained staff made a mistake-Bring your child tomorrow!”

I am sad to report-that was not the answer. The answer was ( I paraphrase) “we want to take your child, and we will work to move that along as best we can.” More of ‘we have to follow regulations from the Office of Child and Family Services.’ How long can ‘as best we can’ take? As long as they want it to take–long enough perhaps for these parents to give up and move elsewhere. Is that this facilities diabolical plan?

Yes, there are regulations and YES they should be followed but I don’t know what regulations this place is following–but here are the  regulations from the Office of Children and Family services regarding a facility being trained to administer medications to a child:

From section 06-3: Compliance Issues as they relate to the American’s With Disabilities Act. 

Administration of Medications
The ADA may require that a day care program give medications to children with
disabilities, in some circumstances, in order to make reasonable accommodations to
enable such children be able to attend the program. The practical ramification of the
ADA in New York State is that day care providers should be prepared to obtain, in a
timely fashion, the required training in order to administer at least certain basic types of medications if required by children with disabilities where such administration will enable the child to attend the day care program. The provider must enroll children within the same time frame the provider would enroll children without a disability. 

A provider also may not advise a parent that the provider must wait to enroll a child with a disability simply because the provider has not completed the process to be authorized to administer medications. The provider must enroll a child with a disability as soon as a place for the child is open. This may force a provider to accept a child with a disability into the program without being legally able to administer the child’s medication under New York State law. If this situation occurs, the provider and the parent or guardian must meet and put together a written plan of how the child’s medication will be provided while the provider becomes authorized to administer medications.

So this facility is hiding behind ‘regulations’ in order to disqualify this child from attending–the fact is the child self manages-self injects their insulin, does their own glucose checks, AND the parents have a plan in place for emergencies until the staff is trained. There is no regulation that prohibits this child from attending-RIGHT NOW!

What’s a Mom to do? Makes her think–if I fight this, get my child in the program–will they treat my child differently? Will the experience of the program for the child be tainted because Mom made a fuss to get the child in?

Good questions, valid questions. Questions I wish we never have to face as parents.

At diagnosis, as I learned to become a doctor, nurse, nutritionist, mathematician, life coach, and cheerleader to my son–it never crossed my mind that I would have to be a lawyer too. But sadly, in some situations that is exactly what I needed to be. During those times, I was often given advice to just give up, move my son to someplace else, and “you can’t fight city hall.” I don’t believe that is true. I believe in educating, raising awareness, standing your ground when you need to—so that people with diabetes-all types- are accepted and able to care for their disease in any setting.

EVERYDAY-80 Americans are diagnosed with Type 1 diabetes. None of them should EVER hear…ACCESS DENIED.

T1D denied access in my town…

Yesterday I received an email from a fellow T1D Mom and it physically HURT to read it all the way through. Without names or places given, I am going to tell this story…because I am mad, because it’s wrong, and mainly–because this is a CHILD we are talking about. 

This amazing Mom signed her child up for a care program at a facility in our town. A PUBLIC facility that tons of kids and adults alike flock to. The child was to start there today, but won’t be going because the child has type 1 diabetes. The Mom got the email YESTERDAY notifying her that her child can’t attend. (Mind you–not a phone call–an email!)

The email this Mom received had a lot of hocus pocus written in it, lot’s of what look like ‘legal’ regulations from State agencies. The email, though written in a business fashion, blamed the parent for this–basically, your child can’t attend because YOU didn’t prepare us. WHAT?? The parents filled out the registration, sent all the documents in, did what EVERY parent does to sign their child up for this program–went beyond that and offered to come in and meet with staff to give them a diabetes 101 class, sent paperwork from the child’s heath care team, provided a medical management plan-but the child was denied-because this child has type 1 diabetes-and the facility said they ‘were following regulations.’

Well, guess what-a review of those regulations state the opposite.  ” a provider must enroll children with disabilities and must administer medications to children to be in compliance with the ADA (American’s with Disabilities Act), then the provider must enroll children within the same time frame the provider would enroll children without a disability.”

As of yesterday, this place was still enrolling kids for this program. Just not kids with diabetes.  

So do we hide our kid’s disease in the nearest closet? . Do we not disclose it-because maybe our teen with T1D won’t get that job, maybe our child won’t make the team, maybe our child can’t go to a popular facility that all their friends go to? But not disclosing the disease–can be dangerous. If an emergency happens-no one would be able to help because they would not know what they are dealing with. 

The kicker-this type 1 kid does their own shots, their own glucose checks–self manages their diabetes. So on a regular basis-this facility WILL NOT be medicating this child–they will only be allowing this child to medicate themselves. The only medication this facility would have to provide THIS child–is a life saving glucagon injection if an emergency occurs. They CAN be trained to do this, and the training is FREE from the NYS Health Department. The facility just did not do what they are obligated to do. Get trained, get ready- to help this child fully participate. 

So last night, parents were scrambling to find a care center for their child. Facing the possibility of losing their job–because they may have to call in- because a place they had pre-arranged for their child, at the last minute said NO. 

So last night, a child cried themselves to sleep, because they can’t be with their friends today, because this disease took one more thing from them, because a facility whose mission statement says “We believe that everyone should have the opportunity to learn, grow and thrive.” didn’t follow through. 

This is not my child, so I could be thinking–not my fight. But it IS my fight because this easily could be Frankie. Parents of Diabetics–this is OUR fight because it could be ANY of our children. 

To this facility-please know-parents of diabetics TALK and we will be talking about THIS. We will tell our friends, who will tell more friends, and this horrible choice that you made will spread. Everyone makes mistakes, please make the choice to correct this one. That message will spread too!

Hoping the title of my next blog reads…T1D access APPROVED in my town.