My poor girl has really been through a lot this month. She has had three flare ups of severe diarrhoea.
One attack was pretty awful I was tempted to take her to A&E but as she's been before in this state and they did nothing to help, she was adamant that she didn't want to go. So we dealt with it at home. I did manage to take some photos of the toilet which I can share with her consultant, this needs to be seen. Although, it's not something I'd share elsewhere.
The good news is that she has the date for her MRI Entogram, 23rd February. She has to avoid certain food for three days before the scan and going through the list I think she will be okay. The only things she really likes are baked beans and peas and red meat but it's only 3 days. Then on the day she will need to drink a liquid (mannitol solution) to fill the small bowl with fluid. Then the MRI will give detailed pictures of the small bowel and evidence of blockages or inflammation.
She had the district nurse arrive to replace her catheter at home. This was a first as previous changes had been done in hospital. She finds the experience extremely painful but she's very brave and the nurse helped by getting it in first time. Lucy found it painful at first, but then she had a flare up shortly afterwards. It was all a bit of a nightmare, we had to keep it clean so it didn't get infected. She needs lots of help with this.
After four days I was getting worried that her pain was not subsiding and said we should call the nurse but she wouldn't let me. I gave her a couple of more days and she said she was okay. She was obviously not, but with lots of cleaning and cream we managed to get her fairly comfortable. She was so scared the catheter would have to be replaced she'd rather walk around in pain every day!
We haven't heard back from the Urology clinic which is a bit worrying. They said we would have the results of her urodynamics testing in six weeks but it's been twice as long. I did get a letter saying they were concerned about something that showed up on her MRI and wanted to consult with the children's hospital. I think this is probably what is holding them up. They want to get answers from everything rather than speculating. I do think I've given them a reasonable amount of time though, so I am going to contact PALS (Patient Liason) to see if they can find out what is going on. I don't mind waiting for results but it would be nice to know that she hasn't fallen by the wayside. (This has happened before.)
No comments:
Post a Comment