I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Thursday, May 31, 2012

Keeping Watch

Murphy's Law: Jessica's blood sugars will choose the seven nights I am on duty alone to go completely haywire. I freakin hate Murphy's Law. I am exhausted. Utterly and completely exhausted. In diabetes defense, it is not entirely the blood sugars' fault I am so tired. I sometimes wonder how much medical school and residency have molded me in how I care for Jess. Do I worry about different things than other parents because I have seen so much? Am I harder on myself as I have been exposed to years of hearing about the "non-compliant diabetic?" I know it is because of my medical training that I try so hard to empower Jess---to make this her disease as much as it can be a 9 year old's disease...to teach her and let her make as many decisions about her own care as she can. It is also my medical training that leads to me sleeping horribly when I am on my own with her. A common feeling among my friends in residency was the huge PHEW you felt the morning after call when an unstable patient had not died on your shift. This feeling really can not be described unless you have experienced it. I remember so vividly sitting apprehensively multiple times during residency and getting "sign out" on unstable patients that might not make it through the night. I would count down the often 24 or more hours I was on call as I kept such a close watch on these patients. I absolutely did not want the patient to die on my shift. Obviously, I did not want the patient to die at all...but every resident I knew would breath a sigh of relief when they could sign over these unstable patients and go home to rest knowing they had done their very best and the patient was still alive. In some weird way when I am alone at night with Jess these memories and feelings return. When the hubby and I are both here at night the responsibility is shared. If I don't hear her Dexcom alerting us that she is low then he might. There is back up. But, when I am alone I am transported on some level back to residency. Jess is my only patient and I am on call every night. And, God dammit, nothing better happen to her on my shift. The "dead in bed syndrome" haunts me when I am alone at night. I wonder for the millionth time why she does not wake when she is low. I simply can not fathom going in her bedroom in the morning and finding her dead. I can't imagine ever recovering, nor can I imagine living the rest of my life knowing that I was the one here alone when it happened, and that I failed to keep her safe. This would be the ultimate failure as a parent and as a physician. It is like her pancreas knows my fears and taunts me. One night this week she was high all night. She had ketones. Jess pulled out her site to check as we were both sure it was kinked. It was completely fine which led to her crying and saying "Daddy inserted that site...I want daddy to insert my site." Of course, she knew he was at the hospital and couldn't. I reassured her that I do kick butt site changes and thankfully we did not hit a nerve. She continued to run high and for the life of me I could not figure out why. The next night...lows. So much scarier for me then the highs. I no sooner would treat a low and give a snack then the Dex would be going off again to alert me she was falling fast. This after a night of highs with nothing different. And two more nights with lows despite changing basal rates. Tonight I went to bed at 9 pm...simply could not stay awake any longer. I woke from a sound sleep to my hubby shaking me at 10:30..."I'm so sorry but you have to get up. Jess has been low three times and I've fed her so much she is refusing to eat. I have to leave for the hospital and you are going to have to recheck her." I groggily get up and put her in my bed for the 5th time this week. It is easier to check her without having to get up. I also have an unfounded theory that if she were to get low I would sense it when she is next to me. Or, I would wake if she had a seizure. At least I tell myself this is the case. And, so tonight will be another night of restless sleep and blood sugar checks. This "call" every night is killing me...in residency the most frequent I was ever on call was q2 (every other night) and there was time to rest in between. My days have been packed with my own patients and my daughters who need me to care for them. I am counting down the hours tonight until the hubby is finally off these seven days and my "shift" is done.


  1. You are a super hero in real life x infinity and beyond and I mean that genuinely from my heart! Relax and let go a tad ( 50% brain space - worry.) for you and your daughter. You can and will let go. Type 1 x 39 years hear thanks to God and my awesome parents who did NOT helicopter too much. Peace be with you and God Bless!

  2. The nighttime can eat us up, can't it? My boys are going through the wonky number nights as they just started summer vacation...and that means a new routine and new insulin needs. Just know when you are up at night, you are up along with thousands of other mothers and fathers checking their children too.

    You are not alone.

    We are "same."

    You can do this!

  3. It sounds like Diabetes in your home during the nightime routine is the "same same" as any other family even despite your medical background. Parents with "D" kids all have the same worries and fears knowing the truths of Diabetes that no one else understands....as Meri said, you are not alone :)

  4. (((HUGS TO YOU!!!)))

    I started to leave you a comment...but then realized I had actually written an entire blog post. Here's my comment...from my heart to yours...


  5. sounds so tough. I wish the dexcom alarms were louder. I can sleep through them for hours on end.

    1. You know what would be nice?? A longer range so parents could keep the receiver on their nightstand over night! :-)

  6. us t1 moms can totally relate, no matter the profession, it's the same fears ,no matter what. now only if dexcom would make a louder alarm. .....

  7. I understand too. I've been on watch over my precious girl going on four years. It explains why I look like a zombie many days. This isn't good for the aging process, but oh well, have to keep our babies safe. Every thought you wrote, we all share with you. We are all mama grizzlies at night, who have to forgive ourselves when we're just human. We're trying to watch over our babies so they'll live their long beautiful lives and never even know about our nighttime worries. Now can we order up a cure, or what! (Dexcom is alarming "High" by my bed. sigh.)

  8. just know you're never alone in these times. My son was dx at 19 months old, we planned on moving him out of our room (cosleeper type bed) and into his "big boy bed", but then along came d...and a bit later a seizure. I don't know how that would have been handled had he been in his own room, not sure if I would have heard his quiet cries of mama through everything else. So, for now, not out of fear but out of my need for peace of mind (and a bit of sleep) he stays in our bed.
    I also wanted to share a good story - my husband has had type 1 for over 20 years without a single complication. He isn't always perfect, but doesn't neglect diabetes either. He doesn't hide it, but never uses it as an excuse. He hasn't had to compromise his life in one area due to d. I am thankful daily for his presence to reassure me that all will turn out okay with Isaac, too.
    Take care and I hope your relief partner comes home soon so you can get some rest, too :)

  9. We are having the same thing this week. Pffft. Our son has been high at night for days. Up over 200 by midnight, waking up close to 200 even after corrections. Last night at 1AM he was 121. We were DELIGHTED. I thought it would be OK to sleep until 5, to grab an approximation of a normal human night's sleep. At 5AM he was 63. Rrrrr.

    I loved reading your blog. I can't wait to read more! Tonight: 1AM-3AM you will be my reading date.

  10. As if 'Demons' weren't bad enough, an uncoorperative one is awful and that is what diabetes is, an uncoorperative demon. Sometimes I feel like I know too much after all that I read, so I can relate to your fears especially since you see so much more than the average person when it comes to complications. My son has T1, but I also have a daughter named Jessica who is 10 :) Take care.

  11. Hi there, reading your struggle is both very real and heartbreaking. I am a T1DM and have had it for 31 years and I am also a RN diabetes educator. Can I ask, have you ever used the mini-dose of glucagon for continuous lows? There is a good article on 'Children with Diabetes' website that explains it. It works really well for those lows that refuse to come up and it helps with the frustration of having to continuously feed your daughter. Check it out.
    Take care, Nicole Schmidt

  12. first of all, i know your daughter is awesome because she has the most awesome name in the entire world! :)

    i am so sorry things have been so difficult for you lately. since i am a person with diabetes and not a parent, i can't imagine how scary and exhausting being "on shift" must be for you. but i do know how it feels to have diabetes keep you up all night, to be frustrated with the reasonless highs, and the terrifying feeling of nighttime lows. it's so very hard.

    but you can do this, i promise you. i know it doesn't feel like it right now, but you can. trust me. and we're here with you every step of the way. <3

  13. Thank you to all of you! I started this blog to try to help others (and to have somewhere to dump all my emotions) but all of your amazing comments and support have been a huge help to me. I am so thankful for all those who "get it!"

  14. I'm not sure you can separate your MD from your T1. I thanked God all the time for my ignorance when my Jess was DX @ 10yrs. (my sister is an RN - she did the worrying) We got up for 2 years btwn 12m-2am to check b/c she'd had a couple seizures. Then we finally got a pump. She's a healthy, married almost 29yr old. You CAN (and will) do this. I'm praying for you to have the strength and endurance - and that those voices in your head quiet down. They are lies. You are doing all that you can. Don't want to be preachy, but remember Father handles these worries much better than we can. You can do this - just keep doing the next thing...

  15. "I think every doctor who cares for a diabetic, especially a T1, should have to read this every day before every shift or day of patient visits." I found this comment on a facebook page sharing my post. I am humbled. And, I also want every wonderful person in the T1 community to know that I post all of my blog entries on my facebook page to reach as many physicians as I can. Our collective voice needs to be heard by the healthcare community. I'll do my part to make sure it is.