Friday, 4 November 2022

What Happened to my Daughter and Elhers Danlos Syndrome

This is the story of what happened to my 17 year old daughter Star, and how her Elhers Danlos Syndrome caused her to end up in hospital for nearly four days.

Friday 19th August began with a visit to the GP with Star. She had been for blood tests the week before and the GP said they would help her with her tummy problems. When we got there a different GP told us of all the vitamins that she's lacking from her blood tests. Then she looked at me accusingly and asked, 'doesn't she ever eat?' So, once again I explained about her tummy problems and how we are trying to find the foods she can actually eat without making her really poorly. So the GP wrote a request for a specialist to see her at the hospital.

Later her boyfriend came around and she was one happy girl. She was looking forward to going out for her birthday and excited about her gifts and special day. Then on Friday evening she told me she hadn't been able to pee all day. I thought it was a bit worrying so I told her I'd get some medical advice in the morning and said she should get some sleep. I was completely shattered myself and I know she was too. She lasted a couple of hours, then my eldest daughter told me Star was crying in the bathroom.

Her tummy was swollen and she was in a lot of pain so I called 111. They told they could send an ambulance but it would take about 11 hours!! But they said she needed to be in hospital within the hour. We quickly got dressed and off we went in the early hours of Saturday morning along the dark and quiet roads.

Accident and Emergency

The A&E was not so quiet though. There was even some woman lying on the floor across the entrance refusing to go home. There were security guards that had to drag her away just so we could get in. Poor Star wanted to go back home straight away. We didn't even get to say goodbye to her Dad as we were quickly hustled inside.

We booked in and was seen by a nurse after 2 hours. Star was really hurting, but there were a lot of really sick people there. When she was finally called things moved pretty quickly. She was taken into a room for an ultrasound and they could see how bad things were. She had more than 1300ml of urine in her bladder. Another hour and she could have easily burst it. A catheter was put in, the experience was a complete nightmare for Star, but she was incredibly brave. We have lots of coping strategies when things are tough to get through and she started talking none stop about the circus we'd seen on holiday, telling the nurse every minute detail. It was her way of taking her mind off things and it worked.

Then she was moved to cubicle where we spent 7 1/2 hours. Star managed to sleep a little. I did nod off a few times in wheelchair. I was dreaming of the wheelchair that Graham had sent me a picture of the day before, a reclining one with a headrest. Problem is, we could only afford it because it came from China and the reviews of the ordering and delivery process were dire. A wheelchair like that in this Country would cost us three times as much. Anyway, I digress!

Eventually she was moved up to  a ward, but they didn't have a bed. She was put in a reclining chair! In a lot of pain and not knowing what was going on she became distressed. I am used to these chairs as they are the type I have my treatment in, so I showed her how to adjust it so it became just like a bed and she was a bit more comfortable then. 

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