We got a call from Caitlin's urologist last week who was not at all happy with me for not taking his advice to use an indwelling catheter for Caitlin each night. An indwelling catheter is basically a catheter inserted into the bladder and a bag is attached to it so that when pee goes into her bladder it is drained into the bag. Her urodynamics test had shown that there was high pressures within her bladder and Mr Bailie wanted me to use an indwelling catheter to help reduce these pressures. I didn't want to for many reasons, the high risk of infection that comes with it was the main reason and I knew it would be uncomfortable for her, and I was afraid that keeping her bladder open all night would cause her to leak constantly. I wanted to use a drug called Ditropan, that is known to reduce pressures in the bladder but Mr. Bailie advised me against this as there are some alarming side effects that may come with this drug. So after we discussed the pros and cons of both methods, I have decided to use an indwelling catheter. It was a really tough decision to make. We have the community nurse coming out on Tuesday to show me how to do it and i'm not looking forward to it. I'm afraid Caitlin wont tolerate it and not be able to sleep with it as it might be really uncomfortable for her. I just hate that she has to have these things done to her and I make the decision to do it. But the truth is, it will prevent damage to her kidneys and that is more important. Her MRI showed that when her bladder is full her kidney is put under pressure so using the indwelling catheter during the night will help her.
On a better note, Caitlin turned ten months today! Her new favourite thing is to clap her hands, it's so cute. We decided to take her to Funderland today which for those who don't leave nearby is a big funfair that comes to Belfast every year.
This is us on the Carousel which she loved!
Then on the Baby Waltzer, which she really enjoyed, but there was moments like this were she was like what the hell is going on here!
Next was the baby Ladybirds and Caitlin hung onto the handlebars the whole time like a good girl and had plenty of smiles for Mummy each time she went past :)
Me and my gorgeous girl
The big wheel was her absolute favourite, she laughed the whole time and cried when we had to take her off!
Finally, just before we left we walked past this rather scary looking man, but Caitlin seemed rather pleased to meet him!
It really was a fun day out to the fair :-)
Oh, Little Caitilin is so cute!!! I am sorry she has Spina Bifida - it will be rough times in yours and hers life. But, always give her challenges. Let her learn to manage life and let her try to do what other children her age does! Let her have fun and love her for who she is and don't let the spina bifida part give her reasons for having exuses when she grows older!
ReplyDeleteI am a mother of two children. I live in Norway and i have Spina Bifida. I have used a wheelchair since i was 14 and i can honestly say i live a very good life. I have been Married for 17 years now and our children are 10 and 12 years of age. None of them have Spina Bifida.
Yes, there have been really difficult periods. I have had surgery 37 times and me and my sister we lost our mother when i was 9 years old.
So keep ut the good work. You really seems like good parents and keep on having fun - because thats really important for all human beeings.
From Heidi
Catheter's suck :( But like you said it's the most important thing to help save those cute little kidneys! :) I know it will go well and you'll be a quick learner, we do what we have to for our babies! Looks like you guys had fun at the fair, I'm jealous! lol Great pictures and happy 10 months to a beautiful princess! Hugs!
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