Jasmine Stalker-Firth

Yesterday morning, we got up bright and breezy and went down to GOSH to get a line change on Jasmine’s tenckhoff catheter. Her new one is in the picture above. The part which is surgically inserted inside her peritoneum is nice and soft and helps keep her exit site (the bit which sticks out of her tummy) clean, as harder tubes can cause the skin around it to fray and become sore. However, the other end where the tube sits on the connector (white tube and blue and white cartridge in picture) which we plug into the dialysis machine has now worn away three times, so yesterday our nurse clinician said that she would try a titanium connector (silver bit at top of picture). Each time the line needs changing they have to snip a good inch off the tube which you really notice when you come to plug Jasmine in on a night.

I like the new look, the only downside is that I can’t constantly check for frays as the actual connection is shielded. However, our nurse clinician and I think that could be a good thing as I was getting a bit obsessive. So, we will see how we get on as it was a bit of squeeze getting the line onto the new connector (there are so few makers of baby-specific PD catheters that getting everything to fit together and without any glitches is something everyone is still figuring out) and just to be absolutely certain because our nurse clinician is fantastic and thinks of, and anticipates, everything, Jasmine’s bags had antibiotics in them last night. It does feel psychologically a bit more robust, and apparently it is good for when children are a bit older and love to tug on the catheter. Jasmine has started doing this already and sometimes will put her hands down her babygro or trousers and fish the catheter out so that she can chew on it.

This animation about how peritoneal dialysis works is the best thing I have ever see on the internet about PD so I putting the link in again here: http://www.kidneypatientguide.org.uk/site/pdanim.php.

Last night we put our Christmas tree and decorations up as Grandma Stalker is coming today for the weekend, so we thought we would start early. We are very excited! Jasmine is only remotely interested in the tree and that is only when you point it out to her.

Her NG is out again for the moment as she kept pulling it out and she is drinking fine from her cup, but the moment she flags again she will get the tube back down. I have stopped fretting about whether the NG should be in or out as her weight gain is slow either way, which is ‘normal’.

Jasmine is a delightful little person and I am thrilled to spend everyday with her. She has her two top teeth coming through together and she has put on a bit of weight – 6.3kgs/13.9lbs is probably her dry weight (that is her weight without the fluid that she has in her peritoneum to dialyse her during the day). So, her teeth total is now four! What a big girl. The other day when we were playing clap-handies, she got hold of my hands and put them together and shouted, “Ap.” I was besides myself with excitment.

This entry was posted on Thursday, December 11th, 2008 at 11:32 am and is filed under home. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.