It felt strange heading home from hospital. We had ticked all the boxes that were required of us, we had become hypo aware in 24 hours, Arlo’s levels had come down, & he no longer had ketones in his blood . He was no longer in the danger zone for type 1 diabetes. Home was the next stop. I didn’t want to leave the safe confines of the hospital. I was petrified to bring Arlo home, here we had nurses & Drs with us 24 hours a day I could live with crappy food and uncomfortable fold away bed just as long as Arlo was safe, how could we do that at home ?
I kept crying at the thought of being at home without any medical staff to help us. What stopped me from crying was Arlo who sat on the bed looked at Xrss and said “mummy is crying again daddy – she is always crying now!” I looked at Arlo saw this amazing boy who had just had his life turned upside down here he was was dealing with it in the most amazing way and then there was me a crying wreck. He was still our boy. He had type 1 diabetes but he was still our boy and he needed us to be strong for him.
Despite my fears home felt good. We had contact with the Diabetic Nurses every 2 hours on the phone and guided by them we got through the weekend. I wince when I look back at his levels for that time we hardly managed to get it down below 20 in that first week. Having a hypo terrified us but that first week looking at his levels we were know where near reaching “4 is the floor!”
We were confused as to this, I being the nurse slightly panicked at the thought of the consistently high sugar levels. I had very little knowledge of Diabetes but what I did know was consistent high levels of sugar in the blood would start to damage nerve endings , could result in kidney failure, blindness and peripheral neuropathy. Armed with my knowledge I was a nervous wreck panicking that Arlo was going to have to deal with all the above. they say a little knowhow can be damaging this couldn’t have been more true for me for the little knowledge I had was indeed correct but for long term uncontrollable diabetes with consistently high sugar levels. What Arlo was experiencing was completely normal in the first couple of weeks of diagnosis. Arlo’s priority was getting his health and his body back to normal and that meant replacing the weight he had lost (about 1.5 stone) and his fat stores and nutrients. His body was screaming out for food and that’s what we had to do feed him resulting in a period of high levels.
It wasn’t easy with high levels comes a rather manic, energetic sometimes uncontrollable Arlo. We’ve now learnt 3 months down the line that anything above 12 mmols and Arlo starts to loose concentration, can become quite obnoxious, cheeky, energetic and exhausting to be around! You can imagine what he was like with levels of 17-28mmols. Added to this Arlo was terrified to go to bed he wouldn’t go to sleep, wouldn’t leave our sides. For the first 2 weeks we would all just collapse in bed and fall asleep together. We couldn’t blame him, neither Xrss nor myself wanted to go to sleep we were all terrified at bedtime & relived when daylight hit and we had made it through another night.
Awful thoughts go through your mind at night. To let go to sleep is hard this meant you were not in control, it meant you couldn’t be one step ahead of diabetes it meant anything could happen. What if he had a hypo and we didn’t know, what if he was high every night how would this affect him in the future? We knew we couldn’t sustain this thought process forever it was unrealistic. We had to put our trust in the levels and the specialists that he would be ok.
Those first couple of weeks we didn’t really leave the house. Arlo was still at home he wasn’t stable enough to go to school just yet. To be honest we hadn’t thought beyond the next couple of weeks and how we would manage school and work. Whilst we were at home and unbeknown to us our DNS was working hard in the background in preparing the school for Arlo’s return. Before Arlo could return to school the staff would need to be trained in how to administer an insulin injection, check blood glucose levels with the finger prick test and know how to manage hypos and hypers if they were to occur. Arlo’s school is a lovely small village infant school with only 3 years and 3 class’s approx 75 children in total. The DNS had arranged some training sessions with all the staff with Mrs P taken on the role as Arlo’s go to person at school. I was petrified in the thought of Arlo going back to school thoughts went through my mind how would they cope, how would they know if he was having a hypo? Would they know what to do? It was such a tiny school I wondered if they had ever had to deal with medical conditions that could potentially be life threatening. We were fortunate enough that both our employees allowed us time at home to concentrate on Arlo, that’s exactly what we did for two and half weeks. During this time and before Arlo went back to school we went along to one of the training sessions that the DNS had arranged with all the staff. I sat in front of all the staff and just sobbed it was all so overwhelming and terrifying for me. I wasn’t ready to let go and allow someone else to be responsible for Arlo’s diabetes whilst he was at school. I wasn’t ready to go back to my job which was a 2 hour commute away in London. Deep down I knew Arlo had to go back to school, I knew we had to get on with our normal everyday life of work, school, socialising, after school clubs etc . So it began the mental preparation of getting back to our normal everyday activities just with type 1 diabetes thrown in the mix to shake it up a bit.
My sister had found us an amazing book for Arlo to read called Even Superhero’s get Diabetes by Sue Ganz-Schmitt . It was an excellent book, one that all of us referred to in the first couple of weeks of diagnosis. It helped Arlo understand what was happening now & also leading up to his diagnosis.
For us we used it much like a medical book referring to pages when we were not quite sure for example the honey moon phase (which I will come back to in a separate post) we kept thinking this was happening – it wasn’t and we did use this book to clarify what exactly the honeymoon phase was.
For those reading this who like us are new to type 1 diabetes I would thoroughly recommend this book, it really helped us in first couple of weeks.