Jasmine Stalker-Firth

Last night Jasmine was a bit pukey and managed to throw up all over herself at midnight, and then when I fished her out of the cot, all over me. So we spent some time cleaning her up and then we settled down to sleep around 1am. Then at 2am, her alarms went off: ‘Low drain volume’, which means that her machine is having trouble getting the fluid back out of her peritonium. Sometimes this is because her catheter line has a kink in it, if she has moved. Other times, it is because the catheter in her pertonium can’t reach the fluid in there and we have to change her position. At 2am I couldn’t see a kink so I picked her up and held her until she had reached her minimum drain target of 250mls. I went straight back to sleep and then at 3am, the same thing happened again. Then again at 4am and 5am and 6am and then 7am.

Consequently, Neil and I were very tired this morning. I was so tired that I dropped a new PD catheter cap on the floor and had to get another one out and wash my hands. Then we had to go to GOSH as we had a 9.30am appointment, so there was no chance of catching up on our sleep.

Jasmine had her abdomen scanned. Today we saw her kidneys, her left one has more or less disappeared and her right one is small. We also saw her bladder and womb and lots of vessels and we could see the big catheter right in the middle of her abdomen. It was another one of those days when we get to know our daughter inside out.

After that we had our usual clinic session and Jasmine has grown and put on weight, which is good. Then Neil and I had our blood taken. They will use our blood to check its type and tissue and see if it is a match and if we can be considered as living donors for Jasmine. After a night of no sleep and seeing her abdomen on an ultrasound, I was a bit teary as I know we are working towards transplant, but it was the first time in a long time that it has been mentioned, and today it became real for the first time.

And it is strange, because even though we live amongst a lot of hospital equipment at home, and we plug Jasmine in every night to her artificial kidney which beeps and hums and ticks over whilst we sleep, we don’t really think about it anymore. We can go whole days where we forget that she has no kidneys and that she needs a transplant. It is odd that we forget and can go about our daily business, loving our girl, and then today all the fears and hopes and memories from our time at GOSH came racing back. And I was overwhelmed. We have come a long way since her birth, a very long way, but we still have a long way to go.

This afternoon we came straight back from hospital all sporting cool plasters (well via the pub and a pint and some chips) and we all went for a lie down. Neil woke up first and put Jasmine on her feed pump for her afternoon feed.

[Just a dietary aside, please skip if you are sick of me moaning: I am still really cross that Jasmine doesn’t like milk – or the taste of anything milky like cauliflower cheese etc., – and the dieticians haven’t an alternative solution. I know how dialysis and medication can replace kidney function because the doctors have explained it to us. So why can’t the dieticians explain what Jasmine’s nutritional targets are and come up with an alternative to pumping milk down her nose? Or at least explain it to me so I could come up with something myself? This is the last time I will mention it, because I don’t think it serves any purpose to keep going on about it.]

Anyway, when Neil came in later on to check on us (well Jasmine, as I am quite good at snoozing) Jasmine had vomited up her NG tube and the milk was pumping out of her NG tube, all over her face, and she was lying in load of vomit and I was fast asleep. So Neil had a big fit, woke me up, and was furious. I could sympathise with him or I would have done had I not been so tired and opened my eyes to see a red-faced Neil jumping up and down on the bed. He calmed down, eventually. But it just confirmed our reasons for not having her on an overnight feed, especially now as she likes to chew the NG tube when she gets her tiny mitts on it!

Jasmine is very clever. She pulls on her catheter line and when she doesn’t have her nappy on, she trys to peel the PD exit site dressing off her abdomen. She regularly reaches over her head in the cot to check for stray syringes to put in her mouth or to pull baby wipes out of the packet and wipe her face with them. She chews anything she can pick up and put in her mouth, and she regularly rolls about the place searching for her tubes to tug. She will also kick us when we try to connect her to her machine on an evening and squeals with delight when we disconnect her on a morning.

She is also starting to feed herself. She can hold her cup and will wrestle with you for the spoon when we feed her veggies. So we give her the spoon of food and she puts it in her mouth. We are not sure if she knows it has food on it, but she eats the food. It is a bit messy this way, but it works, and is less of a tug-of-war, and she is so cute, even when she has covered us all in carrots.

Tonight we have propped her mattress back up in the cot so that she is lying on a slope in the hope that she will drain more easily with the help of gravity. We have also taped the catheter patient line to her thigh to ensure that her wriggling won’t cause the line to kink. It is drastic but we are pretty tired and will no doubt be fighting over who brings whom breakfast in bed tomorrow morning.

This entry was posted on Monday, August 18th, 2008 at 10:50 pm 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.