Chapter 2 - My hospital stay


Greetings, fellow warriors!

My last article ended with me being admitted at the diabetology service at Necker. Today I am going to focus on the two weeks that followed. Warning: this chapter is emotionally draining for me... Bear that in mind, please. I choose to share my experience, the most truthfully I can, and sometimes, the truth is not pretty. It might shock people at some point. Which is not my goal at all. So for that, I apologise in advance.

After the doctor had explained to us that I had type 1 diabetes, he had described the treatment (diet, daily insulin injections, etc) and asked if we had any questions. As you can imagine, having to have daily injections was kind of a nuisance for me. So my mind was focused on how long I would have to endure this treatment until recovery. The doctor seemed nervous when I asked the question. "No, Julia, you don't seem to understand... Type 1 diabetes is treatable, but not curable." I didn't know the difference then. How can you treat something but not cure it? To explain it as clearly as I can, part of my pancreas was "dead", and with transplants out of the equation (it would have been too hard on my body with a high risk of rejection for my situation back then), my only option was to do the work my damaged organ couldn't do anymore. What my pancreas used to do - providing me with insulin when I needed it - I had to do now on my own. And that meant administer myself doses of insulin, via subcutaneous injections (injections just under the skin). That's just doing the job my pancreas used to do, not repairing it.

I don't really recall what happened next... My whole two week stay at the hospital comes back to me in bits and pieces. I can recall the first night. My parents were devastated and worried. I was scared and sad. But we all put on brave faces. I was assigned to a double room, with no one else but me to occupy it for the time being. So it was decided that my mum would stay the night in the extra bed, and my dad would go back to take care of my brothers, V and A (B wasn't born yet). I was hooked to a heart monitor as well as two different drip lines (one for fluids and nutrients and the second one for insulin). The few weeks prior to my diagnostic had taken a toll on my body. Without insulin, all the food and all the juices and ice-creams I had been ingesting, instead of being transformed into energy or fat, was just released as sugar into my bloodstream. To get rid of that overflow of sugar, my body had been working hard, using my reserves of fat (hence the weight loss) and flushing it out through urine (explaining the dehydration). But that was still not enough to evacuate the intake of glucose from my meals. My body, overworked and strained, started to produce ketones, an acid that's basically a poison. My vomiting and exhaustion was direct consequences of ketoacidosis (when my body produces ketones). I had been admitted to the hospital just in time before I developed even more concerning symptoms, I was in the early stages of a ketoacidosis. So the drip lines were vital for me to get rid of the glucose and ketones in my bloodstream and start afresh.

Until then, I was not to eat anything and, being hooked to multiple machines, I couldn’t move from my bed. All the nutrients I needed were in the drips. I probably stayed without moving or eating for 3 days. In the end, I was starving and restless. I needed to move. All the books, magazines, board games and activity books that my visitors (mostly my parents and family) had brought me seemed now like a punition to me. When one of the nurses came into my room on the third day, with a big smile on her face, I knew she'd come to release me from my bounds. She said my blood was free of ketones and my glucose was back to a relatively normal count. It was finally safe for me to start manual injections, therefore I wouldn't need the drips, and so I would be allowed to get out of bed and, yes, to finally eat. As she was taking out the IV drip from my sore arms, another nurse came in with a tray of food and set it down at the table. My first meal in days! My mum was ecstatic that I was showing such enthusiasm. The first nurse reminded me to take it easy. I waved it off, thinking: "Yeah, yeah! I'm fine, I am not made of glass, I have been dying to stand up and finally eat!" I was not even two metres to the chair, what was she so concerned about?

I moved my legs on the side of the bed - all good. Shifted some of my weight onto them - still fine. I tried to ignore my mother's helpful arm, but realised I needed her support to reach the table. When I sat down, I was smiling. Such a victory! And that plate of hospital food was my reward. Never had I been so happy. Small steps, huh? I gobbled up most of it in a matter of seconds. Welcoming the taste and feeling the food go down my throat, and land in my empty stomach. I remember there were green beans. I loved how crunchy and salty they were. But as happy and excited as I was, my body was now used to have no food, and to lay horizontal. And in only a few minutes, I had stood up and eaten a full plate. I started to feel very hot and dizzy, so I put my fork down. My mum's smile faded as I grew quiet and pale. And... Yep. I threw up... Again. After a meal I had hoped would make me feel better, I had  just thrown it all up. The nurse came back in, a smirk on her face. "I told you to take it easy, sweetie!" She took me to my bed and cleaned my tray, as my mother washed my face and handed me a glass of water. The nurse's nonchalance and my mum's attentions reassured me. If none of them seemed worried, then I was surely fine. The following day, I had my first bowel movements since I had been admitted (oops, sorry for the mental image...), and that was the most encouraging news. The nurses congratulated me and mum started to cry. It was so embarrassing! But it meant that my body was digesting normally again. I could start my diabetic life now that I was out of the woods.

A diabetic nurse, let's call her 'IJ' trained my parents and I to inject insulin. She showed us different syringes, with different length of needles, different types of insulin, when and where to inject. Remember that this was about a decade and a half ago. Back then we would still take the insulin from the vial with the syringe... I remember that my first insulins were Humalog (rapid acting) and Insulatard (long acting). Basically, when I have a meal, I would need rapid acting insulin to help me break down the sugars, so I would inject 3-4 times a day and it would be active for roughly 3 hours. I would then try and keep the rest of my day's glucose as flat as possible with a long acting insulin that I would inject once in the morning and once in the evening, and it would last for 10-12 hours. It looked like something like that graph.

I remember that we'd mix the two insulins to minimize the amount of injections. So we had to calculate how much I needed of rapid insulin and how much of slow insulin, inject that amount of air in the vials so we could then extract the insulin from them. It was such a big deal. The areas that I could inject were the belly, the fat of my arms and thighs and the top of my buttocks. I had to make sure to avoid injecting in the same area all the time, so 'IJ' came up with a routine. Odd mornings would be my arms, odd evenings my thighs. Even mornings would be my abdomen, even evenings my buttocks. For lunchtime I could alternate.

There was so much to learn. On top of all that, we had to rethink our entire eating habits. Learn what kind of foods I could eat and what kind I should avoid. My diet was what we know in Australia as a low-GI diet (GI standing for Glycemic Index). Foods with a high GI, like sodas and candy, but also good foods like some fruits and veggies, would send your blood glucose skyrocketing and then go crashing down. Foods with low GI, like grains and legumes, tend to be broken down less rapidly, which means the glucose will slowly rise and then drop back. It has a much less dramatic effect on blood glucose. I remember this pyramid of foods I'd been shown, that I am pretty sure is nowadays in every classroom to teach children about the food groups. As helpful as it was, I hated it. I never was a glutton, but I didn't like not being able to eat whatever I chose. And if I did choose to eat? I had to do math and go through the whole process that was injecting back then. I felt trapped. And it wasn't just about food. I now had to take every little thing I was doing into account! Did I play sports today? Better watch it or my glucose might go down. Did I fall ill? Watch it! Did I spend the day sitting at school? Not much exercise there, better check my sugars to make they don't fly high. Forget about birthday parties and the occasional chocolate pudding at the school canteen!

During my two weeks at Necker, I received visits from almost everybody I knew. My grandparents, friends of the family. All the attention unsettled me. I both welcomed and feared it. Because who doesn't like attention from loved ones, especially in hard times. They cared about me and they spioled me rotten. But it also suggested that they were worried. And I hated being "poor little Julia". "Poor little Julia is sick. She is in the hospital. No, we don't know when she'll be released. Yes, diabetes. How dreadful!" It was demeaning...

I cannot remember exactly when, but at some point someone suggested going to the hospital church. I kind of remember a nun coming to my room, offering to pray with me. I had chosen about two years earlier to be baptised and become a Christian. Our parents had left the decision to us, when we were of age, to chose our religion. It was a friend who introduced me to Christian faith. And though at first, I was only curious, I was drawn to the idea of being a child of God, of being loved by Jesus, of being looked after by the Almighty. I had decided to join the love and the community. After the nun had prayed with me and gone away, we went to the hospital church. I needed the warmth of God's arms, or I was hoping for it. Now, I do not wish to offend anybody. Each experience is our own. I am very respectful of the Church, and our little parish in our town had brought me joy and comfort before.

But, that little church in the middle of the hospital yard, did not. It was cold, empty and dark. Although the church was silent and deserted, I could almost hear the despair and cries of the visitors praying for their loved ones. It was deafening. It chilled me to the bone. I was scared, lost and angry, and God was not there... I don't think I was able to pray then. I doubt I lost faith just like that. I think it faded away like a dying fire. And it is only now, years later, that I realise that this is when I let go of my faith. In God, anyways. Not just because of what I was going through, but because, even though Hopital Necker was, and still is, full of caring professionals dedicated to help us, there was still a lot of sorrow and grief there. How could God inflict such pain onto children, and heartache to their families? And to be fair, my faith was still very new, and had never been challenged before. Unfortunately it was not strong enough yet to survive this test... Now I realise that this is quite a negative message. But I am trying to be as truthful as possible, and this is what I felt then. I am not and never was alone. I still have faith, and even though it might not be in the Christian God, this faith is what gets me through. I'd like to think that, if God was real, He would want me to get through the hardships of life, even if it cost me my faith in Him. The next time the nun came by, I think I pretended to be asleep. I don’t know if mum knew... But the nun never come back after.

One weekend, mum managed to convince the doctors to let me go to her godmother's wedding. She could see that I started to be depressed and thought I could use the distraction. I didn’t go to the ceremony, but I was allowed to go to the reception. I was so excited! In one weekend, I would go to a wedding, in my fantastic red flamenco dress, sleep in my own comfortable bed, in my house, with the soothing sound of my family's breathing, instead of the unceasing beeping of machines and cries in the hospital. I would also get to have my first injections without a nurse or a doctor guiding me (my parents were of course there to assist me). I was going to fly solo, if you will. The evening was perfect. Mum had helped me me get ready and I felt beautiful. The attention was not on me, but on the happy couple. And if I did attract attention to me, it was because I was making the kids at my table laugh with clownish jokes. Not because I was the "poor little Julia" that people pitied and tip-toed around, but because I was funny and joyous. It was a break we all needed. I think to my parents, and brothers too maybe, seeing me like this was comforting and stimulating. It was proof I would be ok. And the night in my bed? I cannot remember it, but I can only imagine it was like the first night when you come back home after a long holiday. You don’t know you had miss it until you were back in it. It was home. After a weekend of respite, I soon had to go back. But it was somewhat less difficult than I expected. I guess I knew what I was going back to. No surprises. I was just proud I could go through the weekend without any incident. It was proof that if I could do it for a couple of days, I could do it for the rest of my life. 

My two-day break from the hospital: A wedding on the Seine!!!

At some point, a sick kid was assigned to the other bed in my room. She was around my age and I cannot recall exactly what was wrong with her. She didn't have diabetes, that much I know. And even though we were in the diabetic wing, she needed the room. She was quite nice. She vaguely explained that she had a heart problem. At night, the machine she was hooked on would start beeping and she would wake up and then the machine would stop. Apparently, her heart rate would slow down when she was asleep. So much so that it could even just stop. Just like that, she could die. In her sleep. One day, she had to go have surgery. Not to fix her. To find out what was wrong. They pricked her lower back with a very long needle and extracted bone marrow from her vertebrae. When she came back, she was in such pain, she could not go to the hospital school for a few days, or even talk to me. She just laid on her side. And then she was moved to another service. I hope they found out what they could do to help her... Even though mum, dad, V and A would come to visit as often as they could, and I had been given books and games for distraction, I was tired of staying in my room. So when mum would come and it was time for a meal, we would walk down the corridor to the common room where I would show off my injecting skills and we'd enjoy our meal together. I loved sitting with mum and sharing food and gossips. It was a fragment of normality I longed for. One day, we were eating in that room, and a young woman came in to have some coffee, or just to take a break for while. It was obvious she was exhausted and had been crying. Mum is the most caring person I know. She felt that stranger's pain and she told her to sit down with us. She asked if she was ok. The woman shook her head. "No". Her new-born baby had had troubles ever since his birth. If I remember correctly, he was allergic to an infinite number of things, medicine included. She was lost. She was aching to help her little baby, but she couldn’t even hold him in her arms. Mum offered her support, a listening ear and a shoulder to cry on. But that was all she could do, really... Compared to my roommate and that baby, I was having it easy. I think I realised then that I was part of the lucky ones.

That’s when another kind of faith emerged. And I adopted a "suck-it up" attitude. I realised that I am the one controlling my fate. I could weaken and require some help. I could despair and waver. But I would always end up standing up again. I started to have faith in myself, and in the love and support of my family.

I am definitely not saying that it got easier because I had faith in myself and my family. There was numerous times where I got beat down. And I needed little reality checks once in a while. I remember one of these little reminders, that really, I was ok. That was a few months after my initial hospitalisation. I was back in Necker, but as a visitor this time. My brother A had smashed his thumb under a rock and was in the hospital for a couple of days. He was sharing the room with another kid, who was maybe 6 or 7. He was born without a lower jaw. He could not talk or chew food, so he was eating through a tube connected to his throat. He had trouble breathing normally. He was in the hospital because he was awaiting reconstructive surgery. I remember being very intrigued by him during my visits. He was full of life, and surprisingly casual about his situation. This was his everyday life... It was humbling. I do not remember his name, or his face. I just know that he was another pinpoint in my life. Somehow. Out of all my encounters in this hospital, months after my first hospital stay, he made a deep impact.

Staying in the hospital for so long and in those circumstances was rough on my family and I. But we powered through. And when I look back, I rarely remember the bad memories. I recall my mum sleeping in the bed next to me the first few nights, her perfume on my pillow, her cheers for my smallest achievements. I recall my dad, staying hours on hand at my bedside, my hand stroking his prickly beard, the gesture becoming a haven of solace. I recall my brothers visiting, awkwardly tender and attentive at first, then back to their normal selves after a few visits. I recall 'IJ' and the nurses, giving so much support and encouragement in each little caring gesture.

I remember learning and growing.

I'm off now, see you soon,

- J