We have been to the hospital for three days in a row, so we are having an easy day today and collecting our thoughts.
On Monday we went to clinics and Jasmine got measured and weighed, and had her bloods done. Jasmine is looking good, but struggling to get enough calories and nutrients to grow well. Her length is good (65.4cms) but her head circumferance and weight (6.1kgs) are a bit of a worry. She is really good at sitting up and looking about. We are increasing her feeds again and going back on Domperidone, which is supposed to push her food through her digestion a bit quicker and prevent vomiting, for the week. There isn’t much evidence that it works, but we are going to try it out as she has been vomiting a lot lately. Last time when she was on it, she kept sticking her tongue out and her eyelids were drooping and eventually, she had to go for a brain scan to check that it wasn’t anything sinister. This time we will see whether she ends up sticking her tongue out all the time, and if the Domperidone actually helps.
We discussed transplants and are starting to get into the details of tissue typing. Ruth got a bit weepy and everyone was really nice and talked to us for a good while.
When Jasmine gets a transplant, if all goes well, she will probably be in hospital for two weeks. Then we will have to take her for blood tests every day for a further month. Of course the fact that she is very small and sensitive means that things change and she could be in and out of hospital a lot. She will still need to take a number of medications. We now have plenty of leaflets which is good as it gets us used to the idea. Previously we were having trouble getting past the statistic that on average you are 4000 times more likely to die on the table than win the lottery. However, there are lots of safety tests and so far a live kidney donor has not been lost in the UK. 5% of transplants fail in the first year, but then the failure rate tails off. A cadaver kidney may last 10 years on average, while a live donor kidney may last 20 years with present technology.
Currently, I am the correct blood group and we are waiting on tissue type testing results. If I can donate a kidney then I would be in a different hospital (the other end of town to Jasmine) for about five days, then need about six weeks to recover. As we are going to have a new baby as well, we could be rather busy, and more than a little stressed!
On Tuesday, Ruth and Jasmine went to UCH so that Ruth could speak to a consultant about her pregnancy. Everything seems to be in order and the consultant was positive about the chances that we will have a trouble free pregnancy and hopefully a natural delivery, if this new baby’s kidneys develop ok.
On Wednesday, Jasmine was assessed by urodynamics to start thinking about what operations to do post-transplant to sort out Jasmine’s plumbing. We met a lovely nurse there who talked through all the possibilities and really cheered us up. After that we wandered around the wards catching up with people in the different units we are involved with. It was lovely to see everyone and not be there for treatment.
Jasmine’s new titanium catheter hasn’t arrived yet, so we will make another trip back to GOSH to change that when it does. The soft line and double cuff for the tenckhoff catheter have helped keep the exit site clean, but the wearing at the other end is a bit of a worry.
We have got a lovely new daybed, which is very comfy. Now whoever is not on dialysis duty can get a good night’s sleep, and Ruth won’t have to lie on the very uncomfortable camp bed when nine months pregnant. Whenever we have a minute we can now go for a lie down.
Yet another pretty picture. Very sumptuous colours for the young princess to be sitting taking court!