The D Word...

Diagnosis - 26 August 2010

My son cries when I go to take him to the Doctor. I soothe him and say "it will be fine" but as I say it, there is part of me that knows it will not be. He begs me to let him stay at home,  and I almost agree. I want to be able to hold him and kiss him better and tell him this is just a bout of childhood constipation, or some unnamed virus he will bounce out of. Instead, I hold him closer and we head off in the car.

I start to tell the doctor what is wrong. I tell him my normally active, alert boy is virtually unable to walk up the stairs, or ten feet along the road. That only weeks ago, he was running anything up to three miles at full speed, and wouldn’t sleep. That now he is sleeping every few hours  and for longer periods. That despite being a usually light eater, he has been complaining of hunger almost constantly and eating huge meals, insisting on fish and marsh samphire. That recently he has been eating a bite of everything, then seeking out other things, raiding the fridge over and over. I tell him he is wetting through seven or eight nappies a night, more during the day, and soaking his clothes, car seat, bed covers each time. I tell him he is waking me through the night, asking for water, despite the fact that he still breastfeeds on cue. I tell him he is losing weight. I tell him he has had bad breath recently and has been badly constipated. I tell him that for the last few days he has been labouring his breathing, even when still, panting like an animal.

All the while, my little boy patiently sits on my lap, silent and holding my hand. The doctor listens to his chest and takes his temperature. He tells us to go home and give him Calpol to reduce his fever, that he has a chest infection. We ask him if his temperature is raised, as when we checked an hour ago it was normal. The doctor pauses. It is the end of a long day. I know. I've been waiting all day for an appointment after being told it was not an emergency case.

I see a penny drop and he asks my son to pee in a sample pot and to hold his finger out for a finger prick test. He does both of these without complaint or suspicion.

When the tests are done, the doctor sits down. I don't want to hear what is about to be said. His expression changes.

"Your son has diabetes. He is experiencing a condition called diabetic ketoacidosis. You need to take him to the Infirmary immediately."

A few days before, I had voiced my fear to my husband, that it was diabetes. He had told me not to worry so much.

I take my son outside to the car park as my husband goes through the admissions details. I am crying and trying to explain that Mummy and Daddy need to take him to the hospital. He tells me he is hungry, but we are not allowed to take him to the shop. We must go straight there.  He will not let go of me and as we drive in, he falls asleep in my arms. I look at him, sleeping deeply, and I cannot stop the tears.

He wakes when we arrive and is greeted by a flotilla of nurses, each one gentle and armed with questions and machines. He keeps asking for food. It is now 6pm. Then 7pm. Then 8pm. He has cream applied to his hands and arms and clear plasters attached. This is to numb his skin. He only knows cream as something that heals you, so he assumes his hands are poorly.

Later, when my husband has gone home to get nightclothes, I have to hold my son down as the nurses, then the consultant, try to find a vein to put the catheter in. They cannot get one in. He is too badly dehydrated. He needs saline and insulin.  Hi body is toxic with acids and his blood the consistency of maple syrup.  As they jab and push this needle into his tiny hands and arms, he sobs, his wide blue eyes full of fear and tears, crying "Mummy, Mummy, why are you letting them hurt me?".  Each time they push it in, he tries to be brave, saying "is it all over now?" but it isn't. He cries out "what's happening to me, Mummy...Mummy take me home now, please". He trusted me to protect him and the betrayal he feels is palpable. 

After an hour of me holding my son down as he cries, they decide it is not possible. They spray his foot with coolant and draw blood from his toe. He has only seen his blood once, when he grazed his knee falling down a step. This is a lot more, and hard won. The consultant then administers two injections of insulin. Eventually they let me take him to bed. He collapses in my arms, his sobs continuing in his sleep. Half an hour later, the nurses come and attach him to machines. Throughout the night, they draw blood, check stats and test his blood glucose. I breastfeed him almost constantly.  He wakes up screaming several times, but in between he sleeps the sleep of exhaustion.

As I watch him, I wonder how he could be this sick. I cannot understand how I did not know. I am sure that I must have done or not done something. Was it the glass of red wine in my breast milk? Did I not feed him properly? More than this though, I feel I have failed him, because I could not protect him. I cry. The machine blips his vitals. I am reminded of looking at the same screen, when he was still dark inside me and I willed him to be safe amidst the agony of my shock and grief, following my sister's drowning.

I listen to his chaotic, ketone-induced breathing, will him to recover. I tell him I am sorry. Sorry that I could not and cannot stop this cruel disease. Sorry that I could not give him more time to be free.

My son is two and a half. He has insulin dependent diabetes mellitus, type one. It is chronic, life threatening and at present, incurable.

Our lives are not the same lives we began the day with. They will never be the same lives again.

I watch an orange city sky and wish on invisible, long dead stars.

Above you can see pictures of Django before his immune system started to attack his pancreas. In these pictures, he is just a little boy who had no worries, no cares and no responsibilities...and our lives were different too...
We stayed in hospital with Django for 8 days, during which time he regained 1.5 kg of weight. The hospital ID bracelet he had been given on admission was tight around his wrist. he had also gained an insulin pump, a large bag of medical supplies and a lifelong relationship with the medical services. And an adult helping of life...

The pictures above are of Django in the 6 months following his diagnosis. He was still very thin and it was heartbreaking to see him struggle every day. But it was also joyful to see him regain something of his own personality - even if it was only in small moments, between the highs and the lows of his blood glucose. But he remained brave and hopeful. And slowly we began to piece together a new life, one where Diabetes lived in the heart of our home. Together, we began to try to learn the impossible Diabetes Dance - and learnt now not to sleep!

The pictures below are of Django since Spring 2011. Life for him is hard, but we are all growing stronger, determined to live positively and pro-actively in the face of the challenges that diabetes throws our way. Because, in the end, this is the only life he has and we, as his parents, need to do what we can to make that a loving, beautiful, wide-open joy-full life - just as we would have done had he never been diagnosed.

Of course, every day we still end our days, and begin our nights with one wish: a cure for Django. This is, I guess, our way of trying to tip the balance in that wish and make it a reality, for him and for all the other people who live their lives with Diabetes Type One.
Above you can see pictures of Django in the months leading up to his diagnosis. Looking back, we cannot believe that we didn’t understand what was happening to him, but we didn’t know what we were seeing. When he was finally admitted, he was 12kg, his veins had collapsed and he was almost completely dehydrated. He had literally been starving, even though he was eating more than ever. The food was unable to be converted into energy, and so his body was starving and toxic with extremely high levels of glucose. He was hours from falling into a coma.

So, where did it begin? What changed first? Well, at first he was extremely active, running everywhere, then he grew increasingly anxious and fearful of changes, crying at the slightest change to his routine and displaying peculiar behaviour such as insisting all labels be cut off his clothes and toys. He had nightmares every night, sobbing and waking screaming, thrashing his legs and kicking off the covers. He developed a fever for days, and awoke from it listless and withdrawn. He ate huge plates of food, especially salty food (where before he had been alight eater) and breastfed almost constantly through day and night. he began to wet through 7 or 8 nappies a day, flooding the bed, his clothes, the car seat. he drank bottles of water. He lost weight, remaining in 12 month old clothes at 33 months. He didn’t grow. 

In the last month, he was completely constipated, emotionally distressed - raiding the fridge over and over, complaining constantly of being hungry. Then he stopped eating and in the last fortnight, became painfully thin. His skin was sore, his eyes black, he slept 16-17 hours a day, could not walk further than a few paces and finally, could not breathe. Even then, the doctor’s surgery did not class it as an emergency appointment...

Looking back, we cannot believe we waited so long. But then again, we didn’t know what we were seeing.