Jasmine had her line changed today at GOSH. The titanium connector has worked very well and lasted seven months without any problems. The line has to be soaked in Bettadine for three minutes before the catheter can be changed, to minimise the chance of infection. The risk is low, so we don’t have any prophylactic antibiotics this time. I held Jasmine during the line change and our lovely nurse clinician very kindly made Ruth a cup of tea (who was a bit teary after a big transplant talk) and was very encouraging about the way we care for Jasmine, which was just what we needed to keep us going in this busy week.
Jasmine’s dialysis volumes have been increased again, to a fill volume of 500 mls, so she needs three dialysis fluid bags a night, rather than two. This means that our next delivery will be bigger, but since we are using the dialysis boxes as furniture in the living room that isn’t a problem.
We walked all the way to UCH for an ultrasound scan for Calista, as Ruth’s hip is much better now. They couldn’t see any problems with Calista’s kidneys, so that is a relief. It is now six weeks since Ruth’s c-section, so she can start doing some exercise.
At GOSH we also met the transplant co-ordinator, who went into more detail about what we have to do pre and post-transplant. Jasmine needs a magnetic resonance venography (MRV) to check that all her veins are free from blood clots. She also needs another electrocardiogram (ECG) to check that her heart isn’t under strain. Post-transplant her blood pressure will be maintained at a higher level to match my blood pressure, and she will need at least two litres of fluids per day to keep it hydrated. This will put extra strain on her heart, but will limit the amount of tissue that is damaged in the new kidney.
We should be able to get hospital transport to and from our flat, as it is important not to go on public transport until the immunosuppressant regime is stabilised. This will make our lives a bit easier, as getting to and from hospitals with two kids can be a struggle, especially during rush hour and once Jasmine is discharged we will be going everyday for at least a month and then every other day and so on until we work down to monthly visits. Any infections could cause the kidney to start rejecting, and any changes in her bloods will mean immediately being admitted into hospital. If Jasmine or I have an infection pre-transplant, even the morning of the operation, it could delay the operation by months.
I have enjoyed seeing the lively girls wide awake and in pretty dresses in the photos. Hope the weather cheers up soon so we can all get out into the sunshine again and gain some of those special vitamins.
Glad too that the hospital visits were so productive.
Wishing you all well as always.
I can’t believe you are so close to transplant. I am so excited to hear of your adventures on the other side….I know its hard and scary and terryfying, ut you will all get through this and be for the better and Calista will be running with Jasmine before you know it! Thanks for sharing your journey with us, its nice to know that there are others that are living our same reality, and how you deal with it is remarkable! BIG hugs to those two little cuties!
Have you got a date yet ? I’ll be very happy to babysit Calista during the transplant and hopsital visits or any other time. Dont heistate to let me know. She’ll be safe with me !
Take care and give both girls my love. Will come and visit soon !
[…] the echo Ruth had to take Calista to her hospital for the results of her scan that she had in July. Everything was normal, and she was discharged, which is great […]