Jasmine Stalker-Firth

Jasmine’s bloods continue to be stable. Her creatinine was 32 rather than 24, but the doctors were happy that this was due to reducing her fluid target. The kidney is working well, which is brilliant. She has so much more energy and is now trying to pull herself up onto her feet. Mainly she shuffles around on her bottom though.

We are now trying to get her to eat some more food. She has been sitting with us for meals, and has been tucking into Quorn tikka masala. She is really good at picking things up with her fork, but is taking some time to get the hang of chewing. She licks whatever is on her fork. Next week we may see a speech and feeding therapist to help with some ideas on how to train her to chew.

Calista is getting the hang of feeding and ate a whole baby jar of rice pudding. She loves eating and is always grabbing the spoon and giving it a good chew.

We have been getting on top of the chores too. The bathroom extractor fan needed replacing, as did a light bulb, and we got all our food delivered, as we still are not supposed to take Jasmine into busy shops until her immuno-suppression medication is finalised.

We all went for swine flu jabs today. We didn’t want to have Jasmine waiting with all the ill people in the GP surgery so we waited outside and ran straight through to see the nurse when it was our turn. Jasmine is so used to injections that she didn’t make a sound when the needle went in. Afterwards we went for a walk round the neighbourhood and bumped into everyone we know locally.

Yesterday Ruth took Jasmine and Calista down to clinics. Her bloods were stable again, which is great. The doctor reduced her fluid target from 1 litre to 750 mls, of which 250 mls is water and the rest is milk. Jasmine is drinking water quite happily from a bottle, but she is not so keen on the milk at the moment. Most of the milk has to go down her NG-tube. She has been getting into her In the Night Garden dinner set. She is pushing her food around the plate and licking her cutlery, but not actually eating very much. Tonight she speared a baked bean with her fork and put it in her mouth, but she hasn’t got the hang of chewing yet, so spat it out again! She is sticking to her diet of crisps and biscuits for the moment.

Ruth took Jasmine down to the post transplant clinic today. She tried out hospital transport again. The guy had two car seats and found the flat without any complications, which was great.

In clinic Jasmine had her bloods done as usual. There was the usual confusion over trying to find the correct sized blood pressure cuff. Jasmine has lost a bit of fluid and is now 11.8 kilos (26 lbs). Calista is 7 kilos (15 lbs 7 oz).

One of the transplant surgeons was in clinic as well, so he looked at Jasmine’s wound. He gave her a good squeeze about and said that it looked to be healing well.

Jasmine’s bloods are still looking good, so she only has to go to hospital twice next week.

Jasmine came back home on Tuesday evening. She was in hospital six days after the surgery to repair her wound. Ruth took Calista down to the hospital and collected her. Ruth bought Jasmine a new winter coat, as the weather has turned cold, and she doesn’t fit in her clothes due to the extra fluid she is carrying at the moment.

She needed some new medicines from the pharmacy. Tacrolimus, one of the immuno-suppression medicines, can make your kidney throw away too much magnesium, so she is on extra magnesium for now. This is a common complication, and hopefully won’t last too long.

Jasmine has never been able to have a bath, as she had her PD catheter in, which had to be kept dry. Today Ruth sat her in the bath and gave her a proper wash, which she seemed to like. Calista also had a go, and loved it. She was splashing her feet in the bath and kicking water on the carpet.

Jasmine didn’t have to go to the hospital for bloods today so Ruth had a chance to sort out some things around the flat. We no longer need surgical scrub in the bathroom. We don’t need medicines all over the kitchen. We don’t need scales in the living room to weigh Jasmine every night. We got rid of the sharps bin, as she doesn’t need epo injections every week.

We had time to go for a walk to the chemist to get some Bepanthen. I am walking much better, but my abdomen is still swollen and sore. Jasmine and Calista enjoyed being pushed around in the buggy. Jasmine was snuggled up in her new winter coat.

Yesterday, the blood cultures showed that she has an infection most likely from the wound (before or after surgery is hard to tell) so she was given specific antibiotics to treat this infection and hopefully she will be back home with us in a few days.

The transplant surgeon who performed Jasmine’s transplant happened to be on the ward to see another patient but kindly popped by and explained that the combination of Jasmine being malnourished due to her illness even with all the aggressive nutrition management she has had, the steroids (which prevent healing), and the size of her wound, and the new enormous (for her) kidney, all contributed to a weak part of the wound splitting open.

Jasmine has gone 36 hours without a temperature so that is good and she was looking much better and enjoying all the attention she gets. She is showing some interest in food – mainly biscuits. I tried her with a sausage yesterday but she just licked it, snapped it in half, and threw it on the floor. She only seems to like snack-a-jacks, chocolate, and biscuits. The nurses have tried her on all sorts: yoghurt, cheese, chips, gravy, mash, spaghetti hoops, but she is sticking to her biscuits and crisps.

I have spent so long just trying to get her to eat anything at all, and anything she did eat was such a revelation that the idea now of giving her a balanced diet seems so strange. As strange as the idea of life after transplant.

We spent so long thinking about transplant, and getting to it, that life post-transplant had never even entered our heads. Luckily, there have been some lovely teenagers on the ward who have shown us how they lead normal lives with this condition and that has helped us see that life goes on, which is great.

Calista has been just fabulous throughout these weeks. You can pick her out of the cot and put her in the sling or buggy and dash out into the night. You can feed her at random times and stop mid-feed and start again later and she goes with the flow. As long as she has the space to roll about and sing to herself, she is happy and has made everything much easier. She has also been a great comfort to me in those scary moments that are part of a big event such as transplant.

Neil is still uncomfortable today, but is starting to look so much better.

I have been getting rather out of breath. The nurses on Jasmine’s ward thought I was having more trouble breathing than I should, so they suggested I go back to Guy’s hospital for a checkup. What a check up!

On Friday I had a blood test and a urine test. I had my blood pressure taken and my blood oxygen saturation measured. I had a chest x-ray and an ECG. I also had a ventilation/perfusion test to look for blockages, or blood clots in my lungs. I had to breathe in a radioactive mist to check that air was getting circulated throughout my lungs. I also got injected with a radioactive substance, to check that blood was flowing properly, without any clots, in my lungs.

Thankfully everything is clear. It has only been two-and-a-half weeks since the transplant, so maybe I just need a bit of patience.