On Thursday evening I heard Star crying in the bathroom. She couldn’t pee again. We were told that if it happened we had to take her to the hospital A&E straight away, so we did. When we got there about 9.40pm it was really full, even more than the last time. Star started to panic and didn’t want to go in. The triage on the door took some details and sent us two doors down to ambulatory care. There were only six people in there, and in total I only saw nine patients in there all night. We were the last to leave, but not home, she was admitted.
But I’m jumping ahead. We waited in this quiet room until about 10.30pm but Star was becoming really distressed. I went to look for help and found a nurses room. I tapped, explained that she was really poorly and the nurse said she’d be out with some paracetamol. She came just five minutes later, took one look at Star and immediately took her to a cubicle. Star was then given an ultrasound scan and the nurse fetched a catheter. She tried and failed to insert it. Try One. She fetched another nurse who had a go and failed, Try Two. Another nurse was fetched and she tried and failed. Try Three.
Star was absolutely amazing, each try was hurting her so much but she grit her teeth and got on with it. She wanted the relief, but boy did she have to pay for it.
A sister was the next to arrive, she tried to insert a catheter and failed, twice. Try Four and Five. So, Star was given a rest and we waited for a consultant. Star was on a trolley so she fell asleep for a little while, it was now around 3am. The consultant arrived and tried and failed. Try Six. He went off to get a different type of kit and came back 10 minutes later. Try Seven was a success, but my poor girl was in so much pain. She was really tired though, and now she was able to get some relief. Urinary retention is a strange thing. I watched her really flat tummy rise to the point she looked about 6 months pregnant. Then once the catheter is inserted her tummy deflates again. To be honest, I think I’d rather give birth than go through what she did that night.
Day Two in Hospital
By 6am we were on a ward in a room by ourselves. Star slept, so I grabbed a 20 minute nap in my wheelchair. (I need a reclining wheelchair now please!) Then the doctors came. Star was told that she could go home with the catheter for a couple of days, but they couldn’t take it out because her bladder needed the time to shrink back to it’s normal size. We were okay with that and felt it was something she could deal with. By 3pm we realised that Star wasn’t going anywhere because we were moved onto another ward and it looked like she was being admitted. Five minutes after getting on the ward a nurse came and said she needed to do Star’s observations but the blood pressure cuff was too big so she went to get another. Before she got back we were off again, Star was going for an MRI on her spine.
The MRI took about an hour and Star was amazing. She told me she just changed the noises of the machine into a beat into her mind and it turned into a tune. I don’t know if I’d be able to do that. I hate MRIs but I had to forget about my fear so I didn’t upset her, and it worked. She was brilliant.
After the MRI we were taken back to the ward and I asked about staying with her. This was a four person ward and all the patients were female, and I so wanted to go home and get some sleep and let Dad take over. They were brilliant and within 10 minutes we were on the move again to a room of her own.
Then Dad came and I went home.
Day Three in Hospital
Again, in the morning she was told she could go home. It was now Saturday and the weekend. Before she could go she needed a consultant to look at her MRI. I knew that there would be little chance of that over the weekend so I started preparing. I did a ton of housework, washing, cooking, shopping (online) and I knew I’d be going back to ‘change shifts’ with her Dad later that day.
I was right, and at 6.30pm I was back on the ward with her and Dad came home. She seemed okay, she was still in pain but nowhere near as bad as she’d been on Thursday evening. But, we had no idea why this keeps happening to her.
The room on the ward was really nice. I had a little bed to myself, there was a personal bathroom for our use only. What I liked most was the window, it was floor to ceiling, wall to wall. And we were six floors up. The view wasn’t the best but it was lovely to sit and just watch the world go by. I became a little obsessed with that window. I was only sad that I missed a thunderstorm during the night. We were both sleeping.
This is what I could see through one pane of the hospital window.
We had a disturbed night but it wasn’t as bad as last time she was admitted. We certainly could have dealt with it at home.
Day Four in Hospital
The doctor came in the morning and said that it looks like she will have to stay in hospital because they couldn’t let her go without the consultant seeing her MRI and he wasn’t working on Sunday. So another day’s wait then. We still didn’t know much about what was going on. Star was feeling a bit better but we couldn’t quite manage a shower. She did have a lovely top to toe wash in the bathroom and nice clean bedclothes. She did most of it herself, whereas the day before the nurses had done it for her. (They didn’t even offer today, I guess being Sunday they were short staffed. No worries though, I was there for her.)
The night was ok, we were both shattered so slept soundly, missing the storm!
Day Five Going Home
The doctor came again in the morning and said she could go home as soon as the consultant had looked at her MRI. Then he told us that she would have the catheter changed by a district nurse in 12 weeks! WHAT? I’d been told originally that she would have it for a few days, and those days had passed so was expecting it to be taken out. But apparently not, with no explanation, because they just don’t know, she has to keep the catheter. She will go to the clinic and learn how to self catheter at home, but if she can’t do it then the catheter will be fixture for the foreseeable future. How did this happen?
Star was distressed, she hates the catheter. But when I told her they would give her a different bag and she could tie it to her leg so no-one could see it, she was happier. The doctor said the soreness would ease an she would get less pain as her bladder got used to it. I had a million questions but he had so few answers.
So, we waited but at least we knew she would be going home. By 3 pm I was getting a little frustrated. I asked the nurse what was happening and she said she was just waiting for the discharge letter then we could go. About 30 minutes later she poked her head in the door and said she had the letter and was going to fetch her a leg bag.
It was another 30 mins before she came back. She changed the bag and showed us how to use it. Then asked if we had bags at home. I said no, this was her first time going home with a catheter. She came back with some bags and a night time bags. I had to ask her how to empty the bag and how to change it. She showed me and did so quickly and made it look so easy.
Then we went home at last. Star soon got the hang of emptying the bag but neither her, me or her Dad could change the bag for the night time one.
Her discharge letter told me nothing, they are still waiting for her MRI results. She was admitted for acute urinary retention. It says she will be reviewed in the clinic in 6 weeks when they should have her results for her MRI and urodynamics (Although she doesn’t yet have an appointment for urodynamics!) She does have an appointment for an ultrasound of her kidneys in a couple of weeks time.
Hopefully the catheter will give her bladder and kidneys a rest and things will just go back to normal. I really don’t know. This is so unfair for a 17 year old. We’ve had to cancel her college application and hope that she will be well enough to apply again in January. She could go to college with a catheter but she feels too uncomfortable right now.
This was Star’s second admission to hospital, the first had been just two weeks previously!