Archive for the ‘GOSH’ Category

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: 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

Neil: Transfer to GOSH

Monday, February 11th, 2008

Transfer to GOSH
I was waiting whilst Ruth was in the recovery room and Jasmine was rushed straight to the intensive care unit (ICU). I phoned the Grandparents to tell them that we have a baby daughter, who weighs 2.8kgs and is 47 cms long.After a while I was allowed into ICU to see Jasmine in her incubator. She was having trouble breathing and was on a ventilator. The doctors had had to remove a lot of mucus from her nose and force air into her lungs. The pressure had torn her right lung and she had air in her chest cavity. So they put a drain in her chest. I was able to look at the before and after x-rays of her deflated and then reinflated tiny lung. I then went to the Turpin Ward to find Ruth who looked well after surgery and was eating her dinner.

The doctor came round to explain to Ruth what had been happening down in ICU and told us that they were waiting for the CATS team from Great Ormond St Hospital (GOSH) to arrive.When they arrived everyone took a lot of time and care to stabilise Jasmine before putting her in the ambulance. I nearly missed the ambulance as I had nipped off to the toilet and they were frantically phoning me, ready to go!

I said goodbye to Ruth and collected her milk from the fridge and got into the ambulance with Jasmine, who was in a blue capsule on a trolley with lots of monitors. We sped across London with the blue lights flashing.