Archive for the ‘home’ Category

YO! Sushi

Friday, December 11th, 2009

Jasmine in YO! Sushi

We went on an epic journey yesterday. We were supposed to just go to clinics in the morning but you know how sometimes things get out of hand.

We got ready to leave at 8am, get on the tube and then be near GOSH for breakfast in a cafe. But on our way out of the door, Jasmine threw up (she is still full of cold and mucus, so a cough on a full tummy can be a bit dangerous). So, by the time we got to the tube (now on public transport hurrah!!) it was after 8.30am, which normally means very busy. Incredibly, it was worse than that, the line was part suspended and it was running with severe delays and no one could physically squeeze on. One woman with a baby in a buggy said, as she came back up the lift, “It is a hell hole down there.” I think she watches too much Eastenders.

After half an hour of trying to get on a tube, we went back upstairs and struggled out of the station (loads of irate people were making themselves even later for work by queuing up to get their £1.10 back for being on the platform). We went for a coffee and croissants next door. Jasmine could only have water by then. It would have been really tough having a two hour gap for the Tacrolimus just at that moment with us starving, if she actually ate something, but she sat there putting the croissant to her lips and then gave it to me and clapped when I ate it.

I love eating and someone clapping encourages me even more, which isn’t great. I have lost weight these last weeks, only because I haven’t had time to eat – as I have found over these last two years chocolate biscuits are a great comfort – and being in hospital so much means I have been away from the biscuit tin. So, I was a bit dismayed to see myself looking such a porker on the above photo and blamed Neil for making me look fat. He said that I am a bit of a Porker-Firth and should Photoshop myself thin. I would if I had the time!

Anyway, eventually we got back downstairs and on the tube, and two men very kindly helped us with the buggies at the other end. By the time we got clinics it was after 10.30am and then there was a bit of a queue. Thursdays are busy as there are loads of transplanted kids, which is lovely to see.

We had one of the transplant surgeons do our clinic, the one who had done Jasmine’s last surgery, which was great but I was curious and asked if it wasn’t a waste of his time, as I felt a bit trivial asking him about prescriptions and the like. He said that if he didn’t do clinics he wouldn’t get to see his patients and he would end up as a technician plugging in kidneys and not interacting with people. He still follows some of his patients, even 20 years later. I was so touched by this answer. It makes me want to rush out and do something really useful with my life.

Afterwards, we went to Yo! Sushi. Jasmine loved it. She figured out how to split the wooden chopsticks and to pick up food with them. She is a genius. She loved the conveyor belt and was very excited by it all.

Calista was less impressed with the whole thing.

Calista in YO! Sushi

We were in there a while, and I gave Jasmine some milk. Unfortunately, she coughed during the feed (she is totally tube fed at the moment) and threw up in my miso soup. It was funny as it looked the same with a bit of vomit in. I suppose that isn’t funny at all, but after seeing her wound ooze discharge, and bloody urine, and bits of her bowel pop out, and various bits of her on ultrasound scans and holding her whilst she is having a load of blood pulled out of her tiny veins or being put to sleep before major surgery, and Neil having arrows drawn on him where they are removing his major organs, a bit of vomit in my soup is light relief, I can tell you.

These last weeks have been something. I got a bit weepy the other day as we were relaxing at home for the first time in what feels like forever. It is still all new with different meds and a new routine. And it is disappointing that Jasmine won’t eat or drink anything and we are tube feeding her. But it is a good day when you are at home and all you have to stress about is the NG tube. I think anyone who has had all the surgery that she has wouldn’t be up to eating.

She is back to shuffling frantically and dancing and generally being her funny, beautiful, clever self which makes me want to hold and kiss her all the time, which she doesn’t want, of course. So, I give Calista some loving instead, because she is totally into being held with her teething and her dribbling, and a bit of vomiting too since she has had the same horrible mucus cold. Unfortunately, she wants that all through the night too. I am so tired at the moment, I could sleep on a washing-line (as my Auntie Yolande used to say).

Once we left Yo! Sushi we had some shopping to do and then went for a coffee and so by the time we got home it was after 4pm. And then we had to wait (or try not to wait) for GOSH to ring up with the blood results, which is always a bit of a worry. As one of the last times they rang up, we had to go into hospital immediately, which was great from a care point of view, but made me want to faint with fear.

But yesterday, they rang and said that we didn’t have to go back until next week which was just marvellous. And then we had to run about doing a load of stuff and we got the girls to bed and then they woke up three times each and went back to sleep and we finally got into bed at midnight. And then my night shift began with Calista. But we had a good night and she only woke up three times.

But I am sure once we get through this phase, things will calm down and everyone will sleep through the night and I won’t feel absolutely shagged out of my tiny mind and look so haggard. Neil looks great, much better than he did, and he is back to his usual organising self, which is brilliant (and extremely annoying). I absolutely adore him and will let him organise me into the middle of next week. He is the bravest man.


Neil: Calista’s first tooth

Sunday, December 6th, 2009

Calista’s first tooth came through today. She has been rather cross and waking Ruth up through the night for a couple of weeks. Calista is very nearly six months old now, and is getting better at sitting up and supporting her head. She constantly rolls around on the floor, chewing anything that comes within reach.

Jasmine had a vomit this morning on her first feed of the day. Everything is trial and error at the moment, as she did without the NG-tube for so long, and now has a working kidney. She has seven medicines in the morning, which is a lot all at once, so we are going to try to spread them out a little.

On Friday Jasmine had bloods again and her tacrolimus level was back in its range 10-15, so we got the weekend off. The creatinine is still slightly high, but stable. Hopefully Jasmine’s bloods will be stable next week.

Jasmine is currently having all her feeds from the feed pump. She has to be involved at all stages. She likes to press the buttons as you set the pump up, and holds her NG-tube out when it is time to connect her. She then pulls on the line and pulls the feed pump over. If you move the pump she shuffles after it, so you have to sit next to her for the whole feed.

Neil: Back home again

Thursday, December 3rd, 2009

Jasmine was discharged today. We had a very efficient nurse who had her new medicines organised and ready to go. Jasmine was discharged and home for lunch. It is brilliant to have her back. It is a bit of a shock though, as we try to get back into a routine of giving  medicines, running the feed pump, changing dressings, etc. All of which we had handed over to the ward nurses for ten days. Her wound is healing up cleanly this time and is looking really neat.

Jasmine’s bloods are still unbalanced. Her tacrolimus level is high. Diarrhea and illness can cause the absorption rate to increase, and tacrolimus is actually toxic to the kidney. This could be one reason why her creatine is still a bit high at 53. However, surgery and viruses could also be causing the elevated level. She will probably need frequent blood tests until the levels settle down.

Yesterday Ruth took Jasmine for a mammoth ultrasound session. Jasmine was reading books and watching TV for an hour as the sonographer double checked every scan and compared them all to previous scans. Ruth’s nerves were shot by the time he finally said that everything looked normal and there is no dilatation. Good news!

I went for a Myofascial release session and got my scar tissue massaged. My shoulder has been giving me a lot of pain from my bad posture after surgery, but Ron has really been sorting it out. Another couple of sessions and some exercises and I should be back to normal.

This evening Jasmine was worn out and she fell asleep while giving me hugs, which was lovely.

Neil: Dietary advice

Saturday, November 21st, 2009

Neil and the girls having their lunch

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.

Neil: Swine flu jabs

Tuesday, November 17th, 2009


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.


Neil: Transplant clinic

Thursday, November 12th, 2009

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.

Neil: Back home

Wednesday, November 11th, 2009

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.

Wound infection antibiotics

Sunday, November 8th, 2009

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.

Jasmine eating a sausage

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.

Jasmine on her little mobile

Gorgeous Jasmine

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.

Neil: Out of breath

Friday, November 6th, 2009

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.

Neil: Home sweet home

Thursday, October 29th, 2009

Jasmine came home on Wednesday. Ruth went to buy a double buggy so that she can push Jasmine and Calista around together, then went down to the hospital. Jasmine was discharged and one of the nurses helped Ruth bring Jasmine home in hospital transport. It is amazing to think that it has only been eight days since transplant. It feels really good to all be back in one place together after staying in various health facilities across London.

Jasmine has her NG tube down again, to help with feeding and medicines. She is only supposed to go six hours between feeds so that her blood pressure doesn’t drop too much. She has to have her immuno-suppression drug, tacrolimus, every twelve hours, two hours after food, and one hour before. She also has to have her blood test just before a dose is due, to measure the trough level of the drug in her blood. This all calls for some careful scheduling.

Jasmine pulled her NG tube out so Ruth tried without it overnight. She had to wake Jasmine up quite a few times and it was difficult to get her settled again. Especially as Jasmine has roid rage from the steroids! She had to put the tube down again so that she could get some sleep.

Ruth has to take Jasmine down the hospital every day for blood tests, and has to take Calista as well, as I cannot look after her. On Thursday Ruth tried getting hospital transport. They were due to arrive at 8.30, to get her to the hospital for 9.30. The guy phoned up and said that he was going to be 45 minutes late because he couldn’t find any car seats. Ruth was ready to go, so she started walking. He eventually turned up and found Ruth, but didn’t know how to fit the car seats, and one of them was broken. Ruth just got a black cab in the end. We tried hospital transport, but sadly it was pretty much as expected.

Hopefully in a couple of days we will get into a routine, get organised on the medicines and trips to the hospital, and start to feel more relaxed.