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.

Friday, May 18, 2012

The Death of a Pancreas

Our journey with Jessica's diabetes has been unusual compared to some. Her diagnosis, while emotionally devastating, was physically easier than others. We were INCREDIBLY blessed that she was not sick at diagnosis---just simply thirsty. She will forever tell everyone that she "got diabetes in a McDonald's parking lot on the way to Shenandoah." I have often had some form of survivor's guilt as I have listened to others tell their diagnosis day stories. I realize how lucky we are in this regard, and knowing what we went through those first few months simply cannot imagine what others have gone through. Jess was on incredibly small doses of insulin for months. She used to take 1/2 unit of Lantus a day, and 1/2 unit of Novolog with meals. They thought perhaps she had MODY (a cluster of genetic forms some of which only require oral meds). She never had positive islet cell antibodies (a hallmark in Type 1). She never had ketones---not even at diagnosis when we found that the "critical high" on her meter was actually a blood sugar of 684. This gave me hope. So many of the potential areas of research are focused on stopping the body's attack on the pancreas and allowing the beta cells to regenerate. We were different I assured myself early on. Jess would continue to make insulin as demonstrated by her extremely low insulin requirements and lack of ketones. That cure might come. Maybe I needed this early on. I definitely wasn't fully ready to accept that this was it. This was how it was going to be. My "perfect" little girl surely could not be un-repairably flawed. I needed hope to survive that first year. Even though I continued to live in denial and tell myself that Jess's pancreas was only sick not dead, we did as we were told. We checked ketones with two unexplained highs on the pump. They were always negative. Of course they were I told myself. Her pancreas is still chugging along, just on a slower track than normal. But, of course, her rates climbed as the honeymoon ended. And, I healed. We all did. Diabetes moved to the back burner, instead of suffocating us with its glaring fire. Until one night the pump was forgotten by the bathroom sink. It was then we were given a true glimpse as to the well being of Jessica's pancreas. She awoke nauseated and having to pee...and, the ketone meter declared her pancreas's death. Large ketones. A working, living pancreas does not allow large ketones to be made. I paused as hope shattered. But, the pain I expected wasn't there. A bit of an ouch perhaps, but not the deep heart wrenching pain I had anticipated. Time had shown me that I still have my "perfect" little girl. Only she's not as little. She's bigger, stronger, more resilient, and simply my hero. And, although I would give anything to revive her pancreas she's absolutely "perfect" without it.