Archive for November, 2009

Neil: Six weeks

Monday, November 30th, 2009

It is now six weeks since the transplant. I had my check-up today with the usual blood and urine tests. I also had a shoulder x-ray as it is still hurting. It is most likely a pulled muscle, but they thought it best to have a look. I can now pick things up and do the chores, so I have no excuse.

Yesterday Jasmine had her latest surgery. At the weekend there is an emergency surgery list, starting from 8.30 am we were waiting around nervously until 5.30 pm when Ruth took Jasmine down to surgery. Ruth had actually got the bus down at 6.30 am, as she couldn’t sleep and it was too early for the tube on a Sunday morning. Ruth made lots of friends on the night bus at Kings Cross!

The surgeon removed a bit of ureter and widened the path through the muscles. He thinks that it was the muscle restricting the flow of urine out of the kidney, but we won’t know for sure until the latest stent is removed in a few weeks time. He had to reopen Jasmine’s wound again, so hopefully it is third time lucky and it is left in peace to heal up.

Today she looked rather poorly in the morning. She had a couple of vomits overnight, and had been on some morphine, which can make you sick. By the afternoon she had perked up, and was demanding to be pushed up and down the ward on her trundle toy.

Neil: Interventional radiology

Saturday, November 28th, 2009

Yesterday Jasmine went for a scan on the urine flow from her kidney. A tracer fluid was injected into her kidney and the surgeons watched the flow via x-ray on their monitors. They had 7 monitors, but couldn’t get CBeebies on any of them. Unfortunately the ureter has narrowed and without a stent urine backs up into the kidney, potentially causing damage. This means that she has to go back for more surgery to remove the damaged section of ureter. Then she will have another stent and hopefully everything will heal up better on the second attempt. Jasmine was very brave, as she stayed still during the whole operation, while they were poking things into her and stitching temporary tubes and expanders into place. The surgeon had incredibly steady hands.

Jasmine hasn’t had any more temperatures, so she is on top of whatever infection she had. Her creatinine is back down to 39 and 41 over the past two days, so the new kidney is doing well. Her calories have been cut back to 650 a day, on a litre of fluids. She has to lose some weight so that she can become more mobile and get to walking about. Currently she is impressing all the nurses with her high speed bum shuffle around the ward.

Neil: Swine flu day

Tuesday, November 24th, 2009

Jasmine is back in hospital. We are still not sure exactly what is wrong with her, but we know it is not swine flu, as that test came back negative. We spent the day wearing masks in case it was though. Every time Jasmine’s nurse came into her cubicle she had to put a fresh mask on. And whenever we left the cubicle, to go to the cafe or toilet, we had to put a mask on.

During the day Jasmine’s temperature reached 39.9C (or 103.8F). She was listless and boiling up. She didn’t respond to antibiotics, or paracetamol, so in the end she had a dose of ibuprofen, which brought her temperature right down. By the end of the day she was looking much brighter.

This latest drama started on Sunday afternoon when her stent fell out. The stent is temporarily ensuring that urine flows freely out of her new kidney and prevents any blockages. She still had wet nappies, so we didn’t panic too much. We phoned the ward and arranged to come in on Monday morning for blood tests.

Monday morning everything looked fine. Monday evening we had a call saying that her creatinine had jumped to 74 from 32, so there was something wrong with Jasmine’s new kidney. We had to go straight into the hospital to repeat bloods and investigate. In the evening her temperature spiked to 39.2C, so something was obviously up. She had an ultrasound scan, which showed that there was some dilatation of the kidney, so a new stent had to go in this morning.

At this stage is doesn’t look like rejection of the kidney transplant. It doesn’t look like a urinary tract infection, or other bacterial infection, or respiratory flu type viral infection. Her x-rays were clear too. She has been on lots of intravenous fluids to keep her well hydrated and we will have to see how she gets on tomorrow.

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: Protruding omentum

Thursday, November 5th, 2009

Jasmine and Calista in the cot

Ruth has been doing a great job tending to Jasmine’s wound and nappy rash. The wound has finally been getting a chance to dry out and heal up. On Sunday night some tissue was poking out of Jasmine’s belly. All rather like in Alien. Ruth took the girls down to Great Ormond Street and got the wound cleaned up and dressed again. The nurses decided to keep an eye on it.

The next day the tissue had gone back inside Jasmine’s belly, so we were hopeful that it would start to heal up, as the rest of the wound was looking much better.

Jasmine’s bloods have been good. Her creatinine has been in the mid twenties for the past few days. On dialysis it was more like 300. The healthy range for a child Jasmine’s age should be between 20 and 40. Her immuno-suppression results looked good so the doctors decided that Jasmine could have a day off blood tests on Wednesday.

However, on Tuesday night a large piece of tissue popped back out again. Ruth washed and dressed the wound and decided to have another look in the morning. Wednesday morning there was tissue the size of a 50 pence piece poking out so we all went down to Great Ormond Street. Luckily we caught one of the transplant surgeons, who examined Jasmine and decided that she would need surgery to put everything back in its proper place. She was put on the emergency list and operated on at 7.30 pm. The surgery went well, and she was back on the ward a couple of hours later.

On Thursday she was looking rather pale. Her temperature spiked up to 39.1 so she was started on antibiotics and had the full battery of blood tests and cultures. She will probably be in hospital for a few days. She has plenty to keep her entertained on the ward, with all the nurses and other patients. At home we can catch up on some sleep!

Jasmine on antibiotics