I know what the FDA will say and I don't care

I've been sick since last weekend. It's mostly a head cold but it tried really hard to get into my lungs, I was able to fight it off and am feeling better today, but that's not the story.

Three nights ago it hit me the worst, I wanted, no I needed to sleep, but Arden's BG was high and being very stubborn so I wasn't able to until about 2:30 am. On a day when I wasn't sick I'd take 2:30 with a smile, but like I said, I wasn't feeling good and so it was tough. But I survived. With about five hours of sleep under my belt, the next day drug on. I was a bit of a wreck if I'm being honest and my cold was doing it's best to advance into my chest. I needed sleep badly now, so I guess you can imagine what happened.

Arden got the cold too, now I knew why her BGs were so stubborn. She stayed home from school and we were sick together. But that night, that second night of my three night tale of woe, it was rough. BGs fought me like a bull and I wasn't able to lay my head down for good until 4:38 am, but I still had to get up at 7:15 the next morning. Now my ass was officially dragging. Every time I tried to sit down yesterday my eyes would close so I stayed busy doing household chores. When the evening came Arden was feeling much better, she didn't get it as badly as I did thankfully and I was hopeful about her BGs and my chances for some overdue rest. 

Before bed last night Arden's BG was a respectable 123 on her CGM, 140 with a finger stick and I was smelling sleep. I stayed up for another two hours to make sure she wasn't going to drop unexpectedly and sometime around 12:30 am I set a temp basal restricting her overnight basal rate because I knew I was going to fall to sleep and stay that way. It makes me nauseous to admit this, but I was happy to trade a waking 190 for seven hours of sleep.

This is what I woke up to.

Now I know what the FDA will say to my next statement and I don't care. We need something to help us. After a while you stop hearing the beeps and feeling the vibrations. Other days you may just be too tired or sick to react. For all that continuous glucose monitoring brings to the daytime, it just doesn't cut it after we lay our heads to rest.

Arden's DexCom receiver, your DexCom receiver should come with a dock, maybe it's an alarm clock too. I should be able to buy a companion clock for my room, for our living room, there should be an app. F&%king alarms and whistles and lights should blare in my ears and shine in my face. Hell I'd wear a bracelet that shocked me when Arden's BGs fell too low. Give me a Rube Goldberg that bashes me in the face, give us something... anything.

Now I am quite sure that the manufacturers of CGMs understand how much an alert system of some kind is necessary and this isn't the first time that I or others have ranted on the subject, but I am tired of hearing that, "the FDA won't allow that". I don't give a damn that each piece of tech that you add to a process makes getting clearance nearly impossible, just someone get the nerve to try. Walk defiantly forward and try to break new ground. Please.

Do it before I die of exhaustion, do it before Arden dies in her sleep. Do it before it decimates another life, another family. Be bold so we can not just live, but live better. Look closely at the next picture. Study the graph and then look at Arden's little face in the shadows. Imagine all of the people living with diabetes that are tired, battling a cold or just would love, absolutely f&%king love, a decent nights rest and then do something to help them.

I know what the FDA will say, they may say that if the signal is carried by my home WiFi for example then my home WiFi would need to be verified so it's not possble. They may say any number of a thousand things, but I don't care. Tell me where to sign my rights away. I promise I won't sue anyone if my router happens to stop working on the night my daughter's BG gets so low that it harms her. I'll take the chance, it's mine to take. Stop restricting great ideas from seeing the light of day because of what might go wrong. Something is better then nothing. Right? 

Seat belts aren't 100% effective, I still wear one. Condoms can't promise we won't get sick or pregnant, but we wear them because it gives us a better chance. This isn't just an issue for young children and their parents. This is also about husbands and wives, boyfriends, college kids, it's an issue that effects every person with diabetes and all we want is a fighting chance. 

Medtronic found a way around the problem with MySentry. Sanofi figure out how to link an app with iBGStar. It can be done.

Here is my unsolicited message to every company that has an idea that they are afriad to move forward with because of government regulations: I know you are scared to approach the FDA with innovation, I get it, I really do understand. But I'm afraid to sleep. I'm afriad that my daughter is going to die. People are scared that their wives, friends, mothers, sons will fall to sleep one night and never wake up. We win, our fear is worse then yours. Help us.

Diabetic ketoacidosis (DKA)

I guess it had to happen eventually? After five years, 10 months and two weeks of living with type I diabetes, Arden experienced diabetic ketoacidosis for the first time. The day after we lost most of Arden's diabetes related technology to a gust of wind and a swimming pool we woke up to a new and much more frightening problem.

Turns out that the OmniPod that we switched to after the pool accident (see the link above) experienced a bent canual at some point in the evening after the July 4th picnic, we didn't know because Arden's BGs where good and we put her to bed.

I'd like to be able to tell you that I hear Arden's DexCom every time it beeps but that wouldn't be the truth. Sometimes I sleep right through it. Her BG began to rise around 3 am and I was unaware. When I woke up in the morning I checked on Arden as I always do, I was surprised at her elevated BG but let's face it... it's not the first time I've seen a 300 number so I didn't over react. I tested her as she slept, bolused and went to the first floor to take a phone meeting that I had scheduled for Arden's Day Gives. About an hour later Kelly (who was home from work for the holiday) screamed that Arden was vomiting. We knew in an instant that this was type I related because no matter how sick they may get, our kids never vomit.

As I cleaned up the floor Arden sarcastically said, "I'm glad we have hard wood floors", great sense of humor on that kid...

We calmly but quickly flew into action. Ketone meter, insulin vial, syringes, new pod and a bottles of water. Her BG was very high but not at the point where I thought we needed the hospital. Then I checked her ketones and almost threw up myself... 3.8. I didn't think I'd ever see a ketone number over 1, this frightened Kelly and I both. I injected for the high BG and the ketones and told Kelly that I'd like to wait about 90 minutes before we made a decision about the hospital. Arden, feeling awful looked at me and said, "hospital?". We explained that she may need IV fluids if her ketones didn't come down soon and with that she drank two bottles of water over the next half hour. As sick to her stomach as she felt, Arden pushed that water down to avoid having to go to the hospital. She's one tough little girl! Ninety minutes later her ketones were 2.8 which felt like progress. 

Arden showed her toughness again about two hours after the insulin injection when her BG began to fall quickly. I couldn't believe I was asking her to eat when she felt so sick to her stomach but there I was and I was asking. I promised her that she was going to feel better soon (ketones now 2.1) but that she needed to eat to keep her from experiencing a hypo. This moment called on my bravery. I had to bring myself to bolus for the food Arden was eating, I so did not want to give her too much insulin and cause her to have to eat again but there was no way that I was getting on the diabetes roller coaster after the morning we were having, ketoacidosis was about all I could handle for the day.

Arden was fine about four hours after she vomited and for the remainder of the day and far into the evening she worked the word "vomit" into every sentence that she could. 

Please don't take this story as medical advice. You should immediately follow your Endo's ketone protocols when you or your child shows any of these signs.

It's that time of year, here come the sick days.

There are just some things that you don't expect when you prepare yourself for parenthood. One of the things that I didn't imagine was being peed on more times then I can count. I guess had I thought it through I may have expected a little pee at the changing table or in the doctor's office. That said, I never imagined how many times I'd be hit collecting a urine sample and I'm talking about pre-diabetes. There was a time when he was about three that I believed my son was trying to pee on my hand. And Arden, oh Arden is the biggest offender as she quite likes to break out into uproarious laughter as I'm bent over collecting the sample during her yearly well visit.

When I realized that checking ketones was a part of diabetes management my first thought was, "great, more to do and learn" but my second thought was, "well at least I don't mind getting peed on anymore".

Today through social media, this time FaceBook, I had a conversation with a mother of a newly diagnosed child who is experiencing their first illness as a type I diabetic. She is understandabley concerned and wanting to make these next few days as stable and simple as she can. I without hesitation recommended that she get a Blood Ketone Meter, we use the Precision Xtra from Abbott.

This meter is fast and accurate when checking ketones, it does require a large drop of blood but nothing that a little extra squeezing can't provide. It's a real lifesaver during sick days and any other times that you require a ketone check. I highly recommend asking your endo to write you a script for one. We actually have two, one at school and one here at home. I can't specifically speak to the pricing as our insurance covers Arden's, however I have seen it online for less then twenty dollars... a small price to pay to avoid getting peed on IMO. Please note that I have never used it as a blood glucose meter and can't speak to it's reliability on that front.

When you have diabetes this time of year is a stressful one. I know that I feel like I'm holding my breath, hoping that Arden doesn't get a cold or worse. There is much that you can do to prevent the spread of germs, hand washing being just one but getting sick is inevitable and being prepared does make the process go smoother. If this meter sits in a drawer 360 days a year it is still well worth having for the other 5.

May you and your children be healthy and germ free this season!

Please know that I have never taken money, products or any other considerations for the product reviews found on Arden's Day. Also consider that I am not a doctor and am just passing on good information from my perspective. Always speak with a health care professional before making changes to a care plan.

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