NEW CHAPTER

Things are going well. So well I’m afraid to think about it too much or talk about it out loud.

On the 8Th of April we went with S.to emergency department. She wasn’t very unwell, I was just concerned about urine not clearing out after a week of antibiotics and she was off food a bit. Typical UTI symptoms for us so I thought we will just go over to check it and get different meds. While we were there her temperature started to rise…I was very upset and stressed out when I found out that they would be keeping S. in….

We managed to stay out of the ward for over a year, so how is she going to take it now, when she’s more mature and understands what is happening? When she’s still not out of the anxiety, caused by trauma from last stay in day ward, when she knows now that “freddie” is gonna hurt a lot? ( BTW I truly don’t get it why nurses insist to call IV line a Freddie- I imagine its suppose to make it easier and sound friendly , but it doesn’t- It reminds me of Freddie Kruger- cause its as scary!).

Anyway, we stayed in, and for 3 days in a row her temperature wouldn’t go down below 39.6

It was a first time in a while I got scared.

Turn out she is immune to Augumentin. So they changed to Ciproxin (plus Gentamicin) and she bounced back in 12 hours. From a child who couldn’t bother even to watch TV , completely drained and no life in her – to a “bouncy ball” who couldn’t wait to go to playroom.

After we left hospital , S. kept getting Ciproxin for two weeks. Very strong antibiotic, but it sure did the job – cleared all the bacterias out of her urinary tract system. Something I nearly lost hope that happen again as she has it for last full one year.

Important note- when S. is clear, no bacteria in the urine, she can stay dry in between the catheterisations (we keep doing them every 3 hours).So when I realised shes clean I decided to try something new- stop using the nappies and let her wear pants. A “big girls pant “ as S. calls them. It was a midterm break off school so it was perfect timing to test. And she stayed dry. So when she came back to school , I risked it and sent her to school without nappy. It works!

It works big time. Not only does she stay dry and tell us straight away when she thinks shes wet (most times its just time to do a catheter and somehow she feels it) but IT GAVE HER A HUGE BOOST OF CONFIDENCE.

After a one week in school her teacher said she can see a difference.

Another week later we heard S. is more confident in the class, interacting more with other kids and is more active in class.

HALLELUJAH!!!!

I don’t think I could have been more happy with outcome of this simple try, a test or whatever you want to call it.

It worked miracle.

On the 25th of May we got to meet Dr Malcolm ( Nephrologist ) and Dr Kim ( Psychologist).

Dr Malcolm said he is so happy with S. condition at the moment – and if we keep doing what we are doing, he doesn’t wanna see us for next 6 months. Fantastic!

Dr Kim said she has never seen S. so happy and bubbly before. S. still wouldn’t talk to any of them but she laughed out loud when they were joking with her and she gave thumbs up when they asked how she feels and other questions. Basically- new level of communication and…. this happy little girl that she is.

It takes a lot to keep it this way and S. doesn’t like it. Often she says she wants to be normal – like everyone else in her school – but that’s another big story I will tell you about soon.

We keep a routine very tide and its a hard work to plan S. social life around the whole busy routine.

  • Catheterization every 3 hours from the moment she is up till bed time (each takes a 10-15 minutes)
  • Oxybutinin 3 times a day (to extend the bladder capacity) ,and probiotics for night, plus new bit to our diet – drinking twice a day water with D mannose – to prevent UTI.
  • Then every single day an enema in the afternoon,to achieve “social cleaningness “(40 minutes)
  • And above that every second day a bladder washout with Gentamicin – to keep the bladder clear  ( one hour).

Might sound easy when you read it – but when you think of the a life of 5 years old – its a lot. A girl who loves to play and meet with her pals- its a lot. Most day she has not enough time to play. I keep telling her how amazing she is for doing it all and that I don’t know any other girl who is so brave

But I’m doing my best and trying squeeze in as much as we can – recently S. started tennis class and she loves it.

That’s the latest update. Hope you like reading it.

Feel free to leave a comment to let us know you are with us 🙂

love

S. mum

One thought on “NEW CHAPTER

  • Charlie

    Thanks so much for your advice my daughter is 4 in September and I have be searching for someone in my situation so nice to here I’m not on my own 😊 cloaca is such a rare condition and so hard to find information

Leave a Reply

Your email address will not be published. Required fields are marked *

*


CAPTCHA Image
Reload Image

This site uses Akismet to reduce spam. Learn how your comment data is processed.