Appointment – Disablities & Mental Health Issues

The following story is in her mother’s words not mine!

Briana had an appointment at her local GP on Friday 23rd August 2019 in the morning. We had decided to make an appointment because we felt she possibly had a urine infection of some sort…..she was peeing a lot and was constantly thirsty! A few days before that when she was spending time with her cousins, she had drank her own juice plus most of their 2 bottles within quite a short space of time, but we thought she was maybe just thirsty with the hotter weather. But later that night after she was in bed for just over an hour we had gone up to check on her. Not even half way up the stairs there was a really strong sweet smell which we couldn’t understand. When we got into her room we realized her pyjamas and entire bed were completely soaked in pee. It was at that exact point that we realized something wasn’t quite right.

The day of her appointment came along and we walked down to the surgery together waiting to be told it was a urine infection. Doctors had went over a fairly accurate consultation which was pointing towards a urine infection but then felt it would be best to do just one more check – a blood glucose test. It was at that point that they realized it could be something else because her bloods didn’t even have a number, they just read as HI. We now know that her bloods must have been above 36mmol as that’s when the machine just reads as HI. I still remember the look on the nurses face when she said “I’ll just wipe her finger again, I maybe didn’t clean it thoroughly enough” and then she repeated the test to get the same outcome. And it was at that point that she started to explain what was going on and what would happen now. I think I maybe listened to half of it and then said “Ah but she did have quite sugary jam on her toast this morning so maybe that’s it?” I was totally in denial and felt about shocked as to what was going to happen. After the nurse explained that it wasn’t that and that we needed to make our way to the hospital I got a bit of a panic on. I didn’t have the car as my husband had it at work, and my mum was at a friends. I felt bad that I had to disrupt her plans but she came back to pick us up and take me home to grab a few things. We were aware at that point that it was going to be an overnight stay at least.

I phoned my husband on the way to the hospital to inform him of everything and he was equally shocked. I told him to finish work and nip home for more things before he popped up because I knew he had a busy afternoon. Once we got to the hospital they did another test which confirmed her bloods were still high. We got into the childrens ward and Briana didn’t seem fazed at all. She was excited to see all the toys and the colourful pictures around the ward. She was running down the corridor laughing, even though we knew she was poorly and everything was about to change. It was a very strange feeling as we were all stressing and she was having the time of her life! Oh how blissful it must have been to Briana – the unknown!

Lots seemed to have happen at once. My phone kept ringing as the family were wondering what was happening, nurses were in and out, and I was just in the middle faffing over everything that probably didn’t matter. Then a doctor came in to explain they needed to take a blood test. It scared the life out of me! I honestly had no idea how they would be able to do a blood test on a 19 month old child! But with a lot of distraction from watching Hey Duggee on my phone, very tight cuddles, and a lot of nurses holding her arms…..we got it! This was a big blood test that would confirm her diabetes but also check for Vitiligo and Coeliac Disease.

After her test was complete we were back in her room for a very short time. Then the diabetes specialist came in and suggested we go up to the toy room so Briana could play and he could have a discussion with me. Luckily my mum was still with me so she kept Briana amused while I tried my best to understand what was happening. The specialist was brilliant and he drew a diagram to explain to me what diabetes was and how it may affect all of our lives. And all I could think about is how am I meant to describe this all to Colin (my husband) when I don’t even know what it fully is. But with help from the nurses I managed later that night when he arrived. He brought his mum and dad with him too as they would normally visit on a Friday night, so they came up to see Briana in hospital.

We had to stay a week in total so we could learn how to do insulin injections, take her blood sugar levels and get our heads around carb counting. Throughout the week our parents also had to learn how to do all these things and eventually our sister-in-law as these are the people who liked having Briana around at their house or would babysit while we went to work.

That was truly the toughest week of our lives. Briana kept having hypos and we saw most hours of the night. The nurses and doctors were so supportive and helped us through really tough days and nights. And even when we were leaving they still offered as much help and support as they could. They understood that some days we had to go to work so we could afford to pay our bills, and did their best to get us back up to speed when either of us returned. We were fortunate enough to work our work schedules around each other so one of us were always there.

And then the day we left we had that exact feeling we had about 19 months before when we returned home with a newborn baby. It felt exactly the same! I felt like we were going home to do it all on our own, but we weren’t! We had so much support from the childrens ward, the diabetes team and all our family and friends. We will be forever grateful for that!

Briana is now almost 5years old and can not only check her bloods by finger pricking herself but she has also learned to scan her libre with an app on her mums old mobile.

What is a parent carer? It’s staying at home with our feet up all day, While others work our wages they pay. Its getting the offers, the discounts and deals, All to help with our child’s extra needs. It’s the DLA we get for no reason, It’s jumping the queues while others stand freezing. It sounds so easy if these perceptions were true! Here’s a few truths I’ll share with you…It’s the bruises we hide from the meltdown last night From holding them until they had no more fight Its the regimented life that we now live For a family meal out what we wouldn’t give It’s the sleep we don’t get and the nights out we miss It’s the explanation to others about all of this It’s the fights that we face in every single way to get their needs met at the end of the day Its the story you tell for the hundredth time to various people, you want to cry It’s the tears we hide because we’re scared we’re not coping It’s the smiles we paint on there’s no use in moping It’s the appointments to remember with doctors and dentist to be honest I’m not sure how we’re not all demented. It’s the progress reviews we sit through at school hearing their struggles it all seems so cruel Its the stares in the playground, the parties they don’t get asked to. It’s explaining to them why on the 10th time they’ve asked you. It’s buying exactly the same pair of shoes in a different size. It’s fighting the system that’s already broke But carrying on with hope against hope Its apologising first for what is to come the courage to go out when you’d rather stay home It’s educating teacher family and friend about the conditions and that they won’t mend It’s the guilt that we feel that we’re not always enough. It’s the schools changing routines that make our day and impacts our child in every way It’s wanting to work but not having the time it’s the desperation to have something that’s solely mine. It’s giving up the job that you dearly love. It’s the not giving up when the going gets tough Its a appreciating the smooth and riding the rough It’s the smiles that they give you and the light in their eyes It’s the ‘ I love people that take us by surprise It’s the others you meet in this new way of life that gets you through the troubles and strife It’s the strength you didn’t know you possessed it’s the times you went on even when you were stressed Its the love that you have for your child who is special that gets us through these tasks but some understanding and empathy from others is not too much to ask! Picture of me and my type 1 diabetic toddler.

Anon!