Heather D. Nelson | 12/17/2013, 12:05 p.m.
Thanksgiving is done and we are fast approaching Christmas. For me, these holiday times have been filled with so many beautiful blessings that I would be remiss if I did not note a special article to the one person who has held me up in my most challenging of times. My husband, Kevin. To describe him as my rock and my foundation somehow fails to really describe exactly how enmeshed my heart is to him. He is the yin to my every yang and despite the random frustrations that is born of that level of connection, he continues to love me and support my role as the caretaker of our home and children. I can’t fathom how I would even be able to breathe without him. Thru our many years, he has shown more and more of his steadfast character to me during the usual trials and tribulations that a marriage endures. And in his usual fashion, our family journey thru Type 1 Diabetes has been nothing if not an opportunity for him to showcase, even more, his dedication to me and his children. He is typically thrilled to let me do the speaking, coordinating, socializing, and more so that he can be the stoic man in the background. But he wrote a journal entry of sorts a few weeks back after a rough night with our big boy J. It is powerful. Powerful words, from a powerful man. They deserve to be heard and shared as much as I can possibly make that happen for they encompass not only his love for his children, but the true measure of a husband. Laying himself aside for our family, showing a peaceful and gentle love for our children. So without further ado, as we say Sayonara to 2013, I gladly share with you my husband’s words.
Day 714 – as written by Kevin K. Nelson
My 4-year-old Type 1 Diabetic, J, comes downstairs at 11:30pm looking out of sorts, so I take him back up to his room to check his blood sugar (BG). His BG goal-range is 100-180, but he is over 300. So, I punch it into the pump and it calculates the dose it thinks he should get. However, to be safe, I skip using the pump and go down to get a needle for a manual shot. It was one of the first things we were ever taught once our son began using the insulin pump for his diabetes management. When in doubt, rule the pump out! So I go downstairs and grab a needle. I put a full unit of insulin in (twice the insulin that the pump would have dosed him because my experience has already shown me that he is more insulin resistant at night). I then stay awake until around 12:45am to make sure that he's coming down, but not coming down too fast since I did double the dose. His BG is 260...good, not too fast but definitely coming down...so I feel safe to go to sleep.
I brush my teeth, set my alarm for 2:30am, and crawl into bed a little after 1am. 2:30am is the 3 hour mark after being dosed and should be roughly as low as he will get, and hopefully that will be the last check of the night. I set my alarm. However, at 2:30am, I wake up and check his blood sugar, and he's still around 260. I just chalk it up to the idea that the manual shot hit him fast and my 12:45 check was as low as he got...doesn't seem quite right...but I punch that into the pump and set my alarm for 3:30am (about 50 minutes later) and go back to sleep.
At 3:30, the alarm goes off and I go to check him again...he's 280...he's gone UP...CRAP!!! I made the wrong decision earlier. Now I have to assume, at this point, that the infusion set on his pump isn't working regardless of what the actual problem is. His infusion set has only been on a little over a day (they usually go about 2.5 days before we start having problems with the body's healing process blocking the insulin). However, he has also wet the bed. This is unusual for him and is likely his body's response to trying to flush out sugar when it's not getting enough insulin, which implies the infusion set probably IS the problem. So, I wake up my wife, Heather, and ask for her help to change his clothes and sheets while I go prepare a new infusion set. She’s much better at getting him to cooperate in the middle of the night than I am at times and let’s face it, he’s 4 and about to get woke up to change clothes and get a shot – he’s gonna be CRANKY!
I go down and get the infusion set primed and ready with the pump while she changes his clothes...I get upstairs, we put on the new infusion set while he sleeps and then wake him up to change the sheets. He does NOT like to be woken up, and I feel bad for the little guy having to deal with people coming into his room at all hours of the night poking him with needles...it's like permanently living in a hospital. So, after we get him back in bed, I lay down with him and sing him the ritual bedtime songs to try to help him go back to sleep. At 4:15, he's still awake chatting my ear off while I try to sing, but it's time for him to sleep. Before I head off to bed myself I check his BG again to make sure he's come down. His BG is 230--YAY! It was the infusion set...sigh of relief...probably no ER run tonight. However, that was a fast drop, so now I've got to watch him to make sure he doesn't drop too low.
I set my alarm for 5:30am, a little over an hour, and settle down for another cat nap, which is apparently all I'm going to get for the night. At 5:30am I wake up, and sure enough, his BG is now only 68. Dammit! So, I go downstairs and get 4 ounces of milk (about 7 carbs), and bring it up and try my best to get a sleeping boy to drink it without waking him up yet again. I have to keep nudging him to get him to drink or the straw just sits in his mouth, but I manage to get him to drink it all and avoid waking him up fully...another yay.
It's now 5:45am. Technically, I should set an alarm for 15-30 minutes to make sure he's coming up because crashes are way more dangerous than highs, but it's so close to morning and his basal rate is so low at night... experience has told me that those 7 carbs will bring him up a minimum of 70 points and that I can finally go to bed. Besides, the kids start waking up in about 45 minutes, so I know that my ally in battle, my wife, will take the morning shift and let me sleep in. So, I grab my shirt from the day before and drape it over my head because I know the morning light is coming soon and I can't afford for it to wake me up. Finally, I don't set any alarms and get almost 3 hours of sleep before it's time to go to work.
Now, that's the worst night I've had, fortunately...but there have been a dozen or so similar nights in the last 714 days of our diabetes journey. I have learned to use my phone for my alarm because it has a feature where it creates a random assortment of 4 numbers that I have to hit chronologically or the alarm will not go off. This feature forces me to push the fog out of my brain just a little bit in order to make sure I wake up for his BG checks. However, even with that, I still have to set my phone over on the windowsill so that I have to stand up and walk over to it, because, even with the numbers, I immediately fall back to sleep after punching in the code if I'm not standing. Once or twice, my brain has been so blurry that even after punching in the code I just laid back down...and then I berated myself in the morning for risking my child's life by not waking up fully and thanked God that he was okay.
It could be worse. A parent who has a child with an extreme illness is definitely worse off, in my opinion, because the danger to the child is more imminent, the effects of the treatments are usually much more drastic, and the children can get so, so sick. Some parents even have to move into homes next to the hospital, which is a total life change. I can't even imagine what they must go through. Nobody should have to go through that, especially not a young child. In contrast, my child lives an almost normal life, so I am in NO WAY saying that this is similar. However, with an extreme illness the child is usually under a doctor's care...there is a sense where you must "give up" or "let go" and just trust the doctor to do his or her best. The doctors may even tell you to just focus on being parents, loving your child, and let them worry about all the medical stuff. This does not make it easier...it is still harder than what I go through...but it is a different mindset. With extreme illnesses, there is a resignation to fate that becomes necessary for your own sanity. With diabetes, however, while it's almost normal by comparison, and not even remotely as traumatic, it is "death by a thousand paper cuts." I can't just be the father, I have to be the father, the doctor, and, even, the pancreas. I walk a tight rope with my little boy...our nemeses on each side. He walks the rope holding the pole, and my job is to keep the bar balanced with sugar on one side and insulin on the other...but at the same time I have to try to stay balanced too. A mistake is deadly. It is not trusting the doctor to do his best, it is working hard to do my best and not fail my child day in and day out. I can't even go to McDonalds and enjoy an ice cream cone with my little boy...ever...without also having to consider his blood sugar. I realized this hard truth one day when I took one of my younger boys out with me and on the way home stopped for an ice cream cone and shared it without a care in the world. Something so simple, and yet that day, I grieved that I would never be able to do the same thing, so carefree, with my oldest boy. Yes, he can have an ice cream cone, but while we eat, T1D sits in the corner watching us, staring us down, and I sit there wondering whether the carb estimate was anywhere near accurate and whether he's going to go high or low.
There is no break. Our nemeses are Diabetic Ketoacidosis (DKA) and the deadlier sibling Hypoglycemia. In case you don't know, DKA happens when the blood sugars get out of control and make the PH balance of the body too acidic which does damage to your body's organs, etc. Many children get diagnosed as type 1 diabetics only AFTER they end up in the ER with DKA. While DKA is dangerous and causes long-term damage to the body...you have a bit more time to react before it's fatal...hypoglycemia is a more immediate danger. A low blood sugar (crash) results in your brain not getting enough fuel and can result in seizures and death happens much more quickly. Some diabetes are most “stable” than our son, we have learned. He is very brittle. Considering that the tiniest droplet of insulin, the lowest dose possible through a manual injection (half a unit) can bring my child from a 150 semi-high blood sugar to hypoglycemia under 50...this is a very real danger that I feel as a weight on my shoulders every day. This has kept me from sleeping peacefully for the last 714 days.
According to something my wife read, 1 out of 20 children with T1D die from hypoglycemic crashes. I don't know of anything else in this life that I am afraid of than that. But...I have a counter on my phone that literally counts the days since my son was diagnosed. It's not morbid (as my wife likes to tease)...it's a reminder that I've had 714 days with my child that 100 years ago I wouldn't have had. I thank God for these last 714 days that I've had with my little boy. I thank God that I live in a rich country where insulin is readily available. I thank God for the advances in medicine that make monitoring of diabetes easy and quick. I thank God that in 714 days of being a Type 1 Diabetic, my little boy has never had a seizure, has never lost consciousness, or ended up in full-blown Diabetic Ketoacidosis. Even with modern medicine, a doctor recently told us that it was remarkable that he'd never had DKA considering his age.
So, I thank God that the only thing that I've lost so far in these 714 days is my own sleep and ice cream cones, because many parents have lost so much more. – Kevin.
Kevin K. Nelson – Dedicated Husband and Father and guest writer today for
Heather D. Nelson – Author-for-hire
Heather D. Nelson – Author-for-hire
God Had Other Plans – Keeping Faith thru Infertility and Pregnancy Loss
Read other articles about living with a Type 1 Diabetic child at her personal blog site
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