More Catheter problems and a Good Doctor

 Yesterday it was Lucy's scheduled catheter change. She wasn't too happy but she knew it had to be done. She stayed in bed until the District Nurse arrived at 11am. 

It didn't go well. The nurse got the catheter in and Lucy said it didn't feel right. The nurse insisted it was right but when she inflated the balloon to keep it in place it fell out! She tried again and said that she'd call back in 1 hour to see if it was working. 

Lucy knew straight away that it wasn't working and in 1/2 hour she was in so much pain I was on my mobile to call the nurse back. While I was waiting to get through, the house phone rang and it was her regular nurse. Lucy is supposed to have the same nurse every time because of her autism causing anxiety. We were so relieved and the nurse came straight away. She tried 3 times to put a new catheter in but it just wouldn't work. Lucy was getting more and more distressed. The Nurse said that she needed to go to A&E as by this time she was retaining quite a lot. (i.e. she couldn't wee so her bladder was expanding.) 

Lucy was really distressed and terrified that they would keep her in hospital again. 

We got to A&E and the place was the busiest I have ever seen it, and we've been there A LOT. My heart sank and Lucy was even more distressed. BUT, a nurse came straight away, took one look at her and put her in a cubicle. If the bladder gets too full then there is the prospect of damage to the kidneys. Lucy had kidney issues before which is why she was admitted to hospital. 

Lucy was looking about six months pregnant by now because of how full her bladder was and she was in a lot of pain.

A doctor came to see us and said because Lucy was just 17 yrs old and had be catheterised for so long he wanted to know why before he put another catheter in. He came back an gave me so much information my head was whirling. Before I get to that I'll let you know how Lucy got on.

It took another three attempts and two different nurses before the catheter was in and working, and it filled the bag straight away. It was terribly painful for Lucy but she was brave and so relieved afterwards. Then we were allowed to go home. We were there less than 4 hours! We've waited that long to be seen before. 

Now, for the information overload. 

Lucy had an MRI back in October last year. They found two syrinx.

A syrinx is a rare, fluid-filled neuroglial cavity within the spinal cord (syringomyelia), in the brain stem (syringobulbia)

We were told she has one on her spine and her brain. These probably come from when Lucy had Cranial Instability when she was 7 years old. It was corrected by surgery but she's never had a single scan or xray apart from the one immediately after the hospital. 

A couple of years ago she was taken to A&E when her neck was hurting and we were told she had a cyst but it would go away. They did not check to see if it was a syrinx. I'm not still not sure if I have a cause for complaint. 

The doctor told me that Lucy had already been referred to two of the best consultants in the hospital but the waiting lists were up to a year long.

The only other information he could give me was that the consultants would decide what they can do about the syrinx but in the meantime it was preventing messages from the brain that make the bladder and bowels work. So Lucy will need to use a catheter until we do know if anything can be done, otherwise her kidneys will be damaged too. He has promised to refer her back to clinic to learn how to self catheterise. 

He also told me that Lucy's pelvic floor is in a bad way. Another consultant will be dealing with this, again we have to wait a long time for an appointment. Best case scenario is physio therapy, worst is surgery. Surgery comes with the added complication of not working because of her EDS. 

It's good to have some answers even though they are vague. It's not good to know that my poor girls body is so screwed up.