Today marks six months from Lyla’s diagnosis. I have resolved that I need to be better about documenting our struggles and successes with diabetes. Someday, Lyla may be very interested to read about all of this. Or, heaven forbid, she may even have a diabetic child of her own and find it comforting.
Friends and family frequently ask me how Lyla is doing. I don’t really have a good answer for that question. In many ways, she is a typical two-year-old – she loves going to the park and playing with her friends and hates taking naps and sitting on the naughty spot. When it comes to her diabetes, how she is doing fluctuates by the day, hour and minute. We rarely have “perfect” days, where her blood glucose levels stay in range all day. Yesterday was actually one of the better days we have had. We had only two readings out of normal and they were off by only 20 or so. Earlier this week, however, we had several days where she bounced back and forth between being too low and too high. It’s like a nauseating carnival ride that just won’t stop. If I remember right, she had a reading over 500 and a reading of 32 (her new lowest ever) in the same day (she is supposed to be between 100-200).
Lyla knows she has diabetes and that it means she gets shots and checks her blood. She has not yet realized, though, that not everyone has diabetes. Last week she was playing with her little friend Kambree when she started to get really whiny. She had been low only a little while earlier and I was afraid she had dropped again. Kambree watched intently as I checked Lyla’s blood and Lyla said to Kambree, “You check your blood at your house?” as if the behavior was a typical part of a two-year-old life. It made me sad for her. One day she is going to realize that other kids don’t have to have shots and blood checks. It’s going to be a hard time for her when that happens.
Lyla rarely complains when we check her blood. Sometimes she fights us because she wants to do it herself. She is fiercely independent. She flinches and whines when we give her shots, unless the shot is followed by a treat of some kind. We want her to be as normal as possible, so when we go to social events, we will give her the option of having a treat and a shot, or no treat and no shot. She ALWAYS chooses a treat and a shot. Those shots are the easiest to give. She is still getting 4-5 shots a day, with Lantus at dinner.
Even as a health professor, I don’t think I really understood diabetes. I think I knew that diabetics took insulin in proportion to what they ate, but I had no idea the extent of it. We are still trying to figure out the intricacies of Lyla’s disease. It is certainly not easy. If she is active, it drops her blood sugar; but if she is excited, it raises her blood sugar. There are certain foods (pop-tarts, Café Rio candies) that spike her blood sugar levels, regardless of insulin given. Other foods seem to have little effect. From my contact with other mothers of diabetic children, I have learned that diabetes has a mind of its own, with no rhyme or reason.
At every meal we have to check Lyla’s blood sugar and then guesstimate how much she will eat so we can dose her with insulin according to what she is having. We have a carbohydrate to insulin ratio that actually changes each meal. Currently, she needs more insulin in the morning so her ratio is around 15 grams of carbohydrate for each unit of insulin. At lunch we are around 30:1 and at dinner 25:1. The ratios are constantly changing. Sometimes we adjust them on our own and sometimes we call the nurse line and they tell us how to change them. We tinker around with them until we find something that works. Then, within a few weeks we have to totally change it because her body is responding differently.
We lovingly joke that Lyla is our expensive child. Our out-of-pocket expense for her prescriptions each month is around $200 . . . and we have good insurance. I can’t imagine what we would do without insurance. She sees a pediatric endocrinologist at Primary Children’s every few months. That bill is usually around $900 for a visit, but luckily we pay only 10% of that.
Lyla’s immune system seems to be weaker than it used to be, as she catches everything and anything. It seems like she is always sick. When she is sick we have to check her ketone levels as well as her blood sugar. If her ketones get too high, she is hospitalized. We haven’t gotten to that point yet, though our doctor told us to prepare ourselves because it will happen. Every time we check her ketones, it costs us about $2 out of pocket. When she is sick we have to check them several times a day.
With an immune system that is somewhat compromised, we have been advised to keep Lyla away from big crowds and lots of other children. I think I mentioned in an earlier post that our doctor told us to keep her out of nursery. We let her play with friends, and try to be as normal as possible, but also try to keep her away from others as much as we can. Aside from our time as nursery workers in our old Orem branch, Lyla has been to nursery twice in her life, which is also the number of times we have made it to all three hours of church since her diagnosis.
I do worry that without normal experiences like play groups and nursery class, that Lyla’s social development may suffer. Before her diagnosis, she was my friendly, extroverted little girl. She liked everyone and was afraid of nothing. I don’t know how much of her current behavior is age-related and how much is a result of an environment where she is always with Mom, Dad, or Grandma. Recently, though, she has been very fearful of new people. She tells me she is scared when people come over who she doesn’t know. She is clingy and shy.
The scariest part of type 1 diabetes is her blood sugar getting so low that she seizures or goes into diabetic shock. We have yet to have that happen, though I think it is probably inevitable that it will happen at some point. During the day, it is rather obvious when she falls low. She gets super whiny and wants to be held. More often than not, though, she falls low when she is sleeping. We try to have dinner early so we can dose her with insulin at 5. Insulin takes 3 hours to fully work. If we can have dinner by 5, we can check her at 8 to see if we need any correction. If she is over 300 at bedtime, she has to have a small correction dose. Usually even a half a unit can make her dramatically fall at bedtime. She will sometimes drop from 300+ to 50 with a half a unit of insulin. Anyway, back to my point – we give her dinner at 5, so we can check her at 8, so we can give her more insulin if necessary and it can be out of her system by 11. That is the ideal, so we can go to bed at a decent hour. It is worthless to go to bed while there is insulin in her system, because we have to check her so often. But, like I said, that is the ideal. It doesn’t always happen. When her blood sugar is low or she has insulin in her system, either Greg or I will stay up until she is stabilized. This can sometimes be hours and is a frustrating process.
As an example, last Wednesday Lyla had a bad day. I was at work late and Lyla’s blood sugar was over 400 when Greg was going to put her to bed. He gave her a correction dose and let her fall asleep on the couch so he could test her blood more easily (she lets us test her in her sleep without flinching). I got home around 11 and Lyla’s blood sugar had fallen to 32. We gave her a little juice in a sippy cup, which she will drink without waking. Then we have to test her every 15 minutes to ensure that she is going up, until she reaches 100. At 11:15 she was at 51, 11:30 at 56, 11:45 at 58, 12 at 59, 12:15 at 56. We gave Lyla sips of apple juice at least four or five times and she did not seem to respond to it. I finally went to bed at around 12:30 and Greg came to bed around 1:30 when she got above 100. I wish I could say nights like this are rare.
Even if she is stable, we typically set our alarm for 2 or 3 a.m. to check her blood sugar. Some nights her sugars rise as she sleeps and sometimes they dramatically fall. Usually she is okay and the check was unwarranted, but we have had nights where she is dangerously low and we are glad we checked. We really miss sleeping through the night.
Maybe one day when my work life is less busy, I will conduct a research study on the coping strategies of parents of type 1 diabetics. It has been interesting for me to assess my own coping. For the most part, I think Greg and I do okay. We worry constantly. I never feel like I can really “get away”. If I am away from her or she is asleep, I am worrying. It is almost an obsessive, compulsive worry in the back of my mind. I am naturally a worrier (I get it from my mother) and can usually come up with the worst possible scenario. Lyla’s diagnosis really threw me off though. Up until that point, I worried about horrible diseases or conditions that were never actualized. When Lyla started asking for lots of water just before her diagnosis, I worried that it was diabetes, but then reassured myself that it is never as serious as I imagine it to be. Only this time, it was. It totally messed with my worry sensor. I don’t know if that makes any sense, but I can’t think of a better way to describe it.
In addition to worrying, it is high stress. Everywhere we go, everything we do, we have to keep diabetes on our minds. When she gets whiny at the store, I have to check her blood. We can’t let her eat at restaurants unless I first can find nutrition information and figure out a carb count. It is stressful to dose her and then hope she will eat what we thought she would. Typically her place at the table is a messy concoction of food scraps. It is nearly impossible to figure out exactly how much she ate.
One of the hardest things for me in relation to Lyla’s diabetes is feeling trapped. I say that in the nicest way possible. I love my children and would do anything for them. But, sometimes the selfish side of me really wishes that I could have a break from it all. I have a two-year-old and an almost one-year-old – they are a lot of work without diabetes! It would be nice to get away once in a while, for an evening, a weekend, a vacation, anything really. But, we can’t leave Lyla during a meal time. It is too much to expect a baby-sitter can check her blood, count carbohydrates, give her a shot, watch her for blood sugar changes, know what to do if she gets too high or low . . . oh, and take care of Nick too. My mom watches the kids while I work. I’ve changed my schedule this fall so I will be home during mealtimes. The biggest problem gets to be when I have meetings or other commitments that come up during the week while Greg is in class. It is nearly impossible to find a baby-sitter for our kids. Most of our friends have kids of their own, so taking two little kids and managing Lyla isn’t something I would be willing to ask of them. Greg and I could probably count on one hand the number of times we have been out to dinner as just the two of us since Lyla was diagnosed. When we are able to go, it is usually at an off hour – late lunch or early dinner, so we can be home to get meals for the kids.
I think that pretty much sums up the hardest part for me – the job is very stressful and I worry constantly. Yet, I don’t feel like I can ever just get away from it all. As bad as it sounds, sometimes I do feel really trapped, like I would like to get away and relax, but even when I am away, the worry is constant. I am trying to accept the fact that my life may always be like this. I imagine I will be worrying about Lyla and her diabetes until the day I die.
Even though it has been a hard six months, and will likely be a challenge that we will face for the rest of our lives, I am grateful that we have our little Lyla. When we checked into Primary Children’s six months ago, the pediatric endocrinologist told us that a hundred years ago the diagnosis of type 1 diabetes was terminal, with six months to live. It is humbling to know that without modern medicine our baby would likely be dead by now. It is a matter of life and death for her, so no sacrifice is too big. We would (and will) do anything we need to do to keep her as healthy and happy as possible through the coming years. I thought Greg put it so well at dinner last night – “We hate diabetes, but we love insulin.” Yes, we love that synthetic insulin allows our baby girl to live, and to live a mostly normal life. We will forever be grateful for that. We couldn’t imagine our life without our little Lyla. She is a bright, shining star in our world, full of personality, wit, and charm. I have no doubt that she will be influential in the lives of many.