Coping with a Catheter

 Lucy is coping ok right now. She's in a lot less pain anyway, and getting used to her bag. We've learnt how to change it and how to add the night time bag. She can do it herself now. She has an ultrasound scan booked on 22nd September to see how her bladder and kidneys are holding up. There was some mention of vEDS in the hospital but Lucy has been genetically tested for this so it's highly unlikely that it's the cause. The geneticist did say that nothing was certain, but we are focusing on 'unlikely.' She has her own district nurse team which are on hand if we have any further problems...hopefully this will mean no more A&E and hospital. She has boxes of supplies and a cabinet of medication. And is now awaiting her Fortisip to try and help her gain a little weight. We still haven't had the results of her MRI but I'm sure if it was bad news we'd know by now.

Next up is tests on her bladder from the Urology dept, which is booked 18th October and she may have her catheter removed then. Next step is to lean how to self catheterise. It should all be sorted by her next appointment which is 22nd November. Fingers crossed.

We are still waiting for her appointment at the gastroenterology dept. I think her gastro problems are the main cause of all of this but we won't know until she is seen. We do know that the first time she was admitted to hospital that her bowels had crushed her bladder. So we can't fix one without the other.

That's where we stand right now. She hasn't been out of the house yet, but with the right clothing the catheter can go unnoticed and she is not in pain anymore.

UPDATE

Catch up on Lucy. She had her Ultrasound on 22nd September and every thing seemed OK. Her kidneys looked better which was good. Today she went to the Urology clinic for the first time . She had the catheter removed and then had to drink a jug of water. She then had to wee, but it wasn't good. An ultrasound showed she was still retaining. She tried again. More water drinking and another wee. More came out this time but it wasn't enough and again the scan showed she was still retaining. She was given the opportunity to learn how to self catheterise but she said she couldn't do it. So she had the catheter put back in. It's obvious her bladder isn't working but we won't have any answers for a couple of weeks. Then she's back at the clinic for urodynamic studies which sounds pretty awful but we will get the answers we need to go forward.

31st October

Today we had the results from Lucy's MRI which she had on her last hospital stay. They are requesting her notes from the Children's hospital because they have spotted something on her spine. I don't want to spurt jargon that I know nothing about but we will have answers soon. On Wednesday Lucy will be having all sorts of tests done on her bladder to see what is and isn't working. Then at the end of the month it's back to the clinic to find out the answers and maybe the thoughts on the MRI scan. At the moment, it's looking like she will be catheterised for some time so she really needs to learn how to do it herself. I'll let you know how she gets on.