Can’t Take My Eyes Off You

The bed shuttered slightly as the train passed out of sight in the dark just down the hill from my sister’s house. Franca and I were sitting on either side of Lia, holding the hair back from her face as she vomited again into a wastebasket. The nausea had come on just after midnight when she’d woken from sleep with a whimper, then jerking upright in the bed and clutching both hands to her mouth we hurried with her to the toilet. The spells of sickness continued every thirty minutes or so and after a while we stopped making her get up and shuffle through the hall to the toilet while trying to catch what we could with a towel and I carried the wastebasket to the bedroom and set it beside the bed. We checked her blood sugars and felt for a fever, and believed by the looks of the contents she’d thrown up that she was sick because of something she’d eaten, a clementine perhaps, or a cracker. By morning the vomiting had ceased and Lia said she felt better. She asked to get up and we did, relocating downstairs to the couch, but after a few minutes she was back asleep. Two hours later when she woke again, her urine tested positive for moderate to large ketones. I looked at Franca, she looked at me. Both of us knew what was coming.

We were there visiting my sister and her family for the weekend to attend a JDRF Walk to Cure Diabetes. It was our first Walk since Lia had been diagnosed and we were excited to be participating in such an event and moved by the opportunity to see and meet other people so intimately connected and familiar with juvenile diabetes. With my sister as captain, we’d formed a team, collected donations, had t-shirts designed and printed. For Lia and everyone of Team Liabetes this was our chance to experience firsthand the compassion, commitment, and community of which we all now belonged. But by now everyone was awake and there was a collective sense of dread in the room. No one mentioned the Walk. We knew we had to get fluids in her to bring down the ketones and we focused on that while we waited for the nurse hotline to call us back. So then Franca filled her in on the details and the nurse confirmed what we both had been thinking, that Lia should go to the hospital.

Hospitals, I think, especially emergency rooms, are typically not very good places for people who are sick and wanting to get better quickly. They are cold and impersonal, with form-letter questions offered and responded to in haste and in some cases not asked at all and therefore let unanswered, which may be okay if what you need is a broken bone set — all the proof is in the x-ray — but in caring for chronic illness you have to be on your guard, and in the overheard words of the doctor treating Lia, we looked like a couple of novices. Had I heard her then I might have had something to say about that, but later, after we took her back to my sister’s, well after the Walk had ended, it occurred to me that it wasn’t our lack of experience that had gotten us in trouble. It was our confidence, and it started really before we’d even left our house.

When you do something day in and day out, hour by hour, minute by minute, it becomes routine to you, and though it seems the first rule of diabetes is that there are no patterns, our watchdog treatment of it had become second nature to Franca and I. Checking blood sugars, monitoring food intake, giving multiple daily injections, observing activity, evaluating temperament, watching for signs of physiological distress. We’ve learned in the last four months to do these things in the dark, while half asleep, at work and in keeping a house and while struggling to preserve a strong hold to our family’s non-diabetic identity, and though we never feel like we have it licked, we do work hard at maintaining — a word I hesitate to use — Lia’s blood sugars.

The trouble with travel is believing that the confidence you carry at home is the same one that comes with you when you go to another place. I knew that it wasn’t from when Franca was gone to France. It may look and feel like confidence but away from home routines crack and break, they fall apart. There are too many new things to consider, new people, new foods, new lifestyles. If you let them they will get in the way of what has worked for you in the past and instead of having the effect you’re familiar with it has the opposite. When that happens it takes great courage to move beyond it.

We think it was something she ate, we said. Plus, there was lots going on, the car trip, then we stayed up later than usual. There was other company too, lots of running around. It may have just been the excitement.

Did anyone else get sick? the doctor asked.

No, just Lia.

The doctor looked over her vitals, checked her ears, peered down her throat. Asked her to take deep breaths. She stepped back and wrapped her scope around her neck. I knew what was coming and had already cautioned the doctor that it wouldn’t be easy. Lia would soon know this too.

The doctor looked down at her as she spoke. Well, little miss, we have two choices.

Okay, Lia replied.

We need to get some fluids in you to help your body get rid of those ketones. One way of doing that is for you to drink lots of liquid and stay here for five or six hours while it does its thing. The other is you let me put in an IV and you’re out of here in two or three.

I can go back to my aunt’s then?

That’s right.

Lia looked thoughtful. We had already talked about this, about how when she’d had an IV before, on the day of her diagnosis, her body was severely dehydrated. Then her blood vessels were collapsed and very thin, it’d been very difficult to insert a needle into them. Today was different. Today she was much better, stronger and it would hurt but not like before.

Lia made her mind up and when she spoke her voice sounded strange, far too grown up for the small little figure sitting up in the bed. Then I’ll take the IV, she answered.

The doctor nodded and left to go put in the order. Lia looked over at me and her mother.

I didn’t know what to say to her. Somehow sorry was just not enough.

7 thoughts on “Can’t Take My Eyes Off You

  1. I know exactly how you feel. I have two daughters diagnosed in 2009, just three months apart. The first time my daughters were sick, we all got the swine flew at the same time, she had severe keytones. We found out later that any child that is ill will present keytones. I felt relieved about that but it still scared us to death. My youngest was the worst but she bounced back a lot quicker because they gave her a IV that flushed it out a lot faster than it would have if we had treated it normally. Best wishes with you and your daughter

  2. I had to take Quinn to the emergency room about 5 months after diagnosis. She began vomitting and had ketones and high blood sugars. My parents had just gone out of town and I had no one to watch the sleeping baby. I called and paged my husband a dozen times, but he was working in an area with no service. I think those hours that morning were some of the worst of my life. The inept nurse had to stick her three or four times trying to get in the IV (I have never been so mad!). Our hospital doesn’t treat children with diabetes and the only doctor who would oversee her was himself sick. They said if her blood sugar and ketones didn’t come down quickly they were going to transport her to St. Louis where our endocrinologist is 200 miles away! Luckily she bounced back relatively quickly and they kept her over night to treat and monitor. I felt so helpless that day because there was nothing *I* could do for her.

    I think your scenario is the one that all of us d-parents really dread. That “first sick day” when all you have learned and prepped for is thrown out the window.

    But you got through it, she got through it. Know that it is exactly your confidence and knowledge that got her treated so quickly and back to her aunt’s house within hours.

    (And as a side note…her blood sugars ALWAYS go high when we travel by car. It really freaked us out when we were discharged after diagnosis and had the long drive home in darkness. But now we know to expect it on car trips.)

  3. I am so sorry that this happened to Lia. I am sorry about all of it. It’s all so darned hard. Please know that you and Franca are great parents to Lia and are showing her the way, of being strong and caring for her. There is strength and beauty in that. Among all this sadness, there is love. It will get you through it. Sending positive thoughts and prayers your way from one to D-Mom to a D-Dad and D-Mom.

  4. There are many things to dislike about diabetes, but ketones are my least favorite part of diabetes because they always sneak up on me when I think I’m doing everything right, and it is sometimes hard to recognize you are in trouble with them until it has gotten somewhat serious.

    I have had type 1 for 20 years and have fortunately had only a few bad episodes with ketones and I went to the ER only once because I was nearly in DKA, due to a bad infusion site (I should have known to switch the site as soon as my sugar got high, but as you said, we get in our routines and I figured if I bolused the high it would come down eventually). Despite my vomiting and high ketones, my blood sugar came down and my pH level was normal so the doctors did not consider it full-blown DKA and they sent me home a few hours later.

    Lia is fortunate that you and Franca are so dedicated to her care and that you try so hard to manage her diabetes. I hope she is feeling better!

  5. Oh, Steve. Your posts always resonate with me but this one did in particular. We’ve been there. In the hospital with Frank trying to rip the IV out as he didn’t undertsand what it was for. Lia is old enough for the truth of it all to be so much harder for her and thus for you and Franca. People have told me it’s harder for us than Frank as he will never know any different. I think Lia’s age makes it so hard for you guys. You can, of course, remember a time pre-D but sadly so can she.
    Here in Colchester we have what is called 24-hour Open Access to the children’s ward and only need to call them on our way in. The number of the ward is on my mobile phone. We have done it once in 18 months. However, out of Colchester we are looking at A&E and a much scarier situation. When we spent three weeks in Brittany in December we found ot where the nearest hospital was to our cottage and marked it on the map. The guy at the Tourist Information centre was puzzled that that was our only question! He was possibly puzzled at by rusty French too…
    Every experience like this will only make you stronger. I know it sounds glib but it really will and your knowledge of what to do will improve and bring solace. Hugs to your whole family from mine. You are doing so well.
    Wear your underpants outside your trousers this week, all of you, you are superheroes!!

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