Archive for October, 2009

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.

Neil: Patient hotel

Monday, October 26th, 2009

Neil and Calista in the patient hotel

On Thursday, two days after surgery, the doctors said that I was fine, and could be discharged. The nurses were concerned about my bowels, but that was all! My friend Umer kindly helped me from Guy’s hospital, into the mini-cab and up to see Jasmine at Great Ormond Street. It was great to see her. She was all puffed up, with a lot of fluid on board. I was rather out of breath, so didn’t stay long and got Umer to help me over to our room in the patient hotel and get settled in.

Great Ormond Street Hospital has a patient hotel opposite the hospital. This is for patients who are well enough to leave the ward, but who need to be near the hospital for tests or support and cannot travel far. We were very lucky to be able to stay there before Jasmine was discharged so that I could visit Jasmine, and Ruth wouldn’t have to travel between the two of us.

Overnight the power went out and all the emergency lights came on, so we didn’t get the best sleep. As the power was out we couldn’t have a cup of tea. This also knocked the lifts out for most of the day (more on that story later). I was feeling pretty rough and threw up in the morning, luckily there was a Clinical Site Practitioner (CSP) on hand to look me over. They were going round all the rooms, checking all the patients were OK with the power cut. I wasn’t in too much pain, but I didn’t have much appetite. Ruth went on an emergency tea and toast run to a nearby cafe. Later on my parents came to look after me, while Ruth spent time with Jasmine. I tried phoning Guy’s but after you have been discharged there is nothing they can do and I would have had to go to Accident and Emergency. They hadn’t sent me home with any of the anti-nausea medicine that I had been given whilst on the ward.

In the afternoon Ruth got a wheelchair and pushed me over to see Jasmine. By the time I got there I was tired and needed to get my breath back. I got to see the CSPs again, as I was looking rather ill. They said that I had surgical emphysema, where the skin feels like it has tissue paper underneath. This was weird, but not dangerous. It was also causing me pain in my shoulder.

On Saturday Aarti kindly came round with lots of different food to try to combat my nausea. As nausea is a side effect of the opiate based pain killer tramadol I decided to stop taking it on Sunday. My nausea was much better, as were my sweats, and shakes. Aarti came round again, as did Greg. By Monday I was in some pain, but feeling much better. My parents came up for the day, and did the washing.

In the evening I felt like getting some air, so decided to walk slowly over to see Jasmine. She was sitting up in her cot, watching the TV, looking a bit cross, but otherwise doing well. When we got back to the patient hotel we discovered that the lifts were out again. There was no way that I could walk up four flights of stairs so I had to wait in reception. Ruth went up to the room and brought me down a cup of tea. The CSP came to check that I was OK (again!). After a couple of hours with no sign of a lift engineer we decided to abandon the patient hotel and go back home. Ruth packed up some things, got us a black cab and took Calista and me home. By the time I got home I was cold and exhausted and cursing the patient hotel! But it is always so nice to be back in your own home.

Neil: Transplant surgery

Wednesday, October 21st, 2009

Neil pre surgery

I went down to surgery at Guy’s hospital early in the morning, around 8 am. I was very nervous and tired and wanted to get on with it. Unfortunately my notes had gone walkabout so the anaesthetist tried to make small talk. They found the notes, the anaesthetist put in a new cannula and I was soon under.

At Great Ormond Street Ruth took Jasmine down for surgery. The first lift broke down so everyone had to switch to a different lift. Ruth held Jasmine while she was put under by the anaesthetist. She then had a long anxious wait. She got some lunch and fed Calista, then headed over to Guy’s to visit me.

Neil post surgery

I woke up in the recovery room. The nurses were very nice, chatting and keeping an eye on me. Then someone came in, and asked where the kidney was going. I knew that it must have gone already, but it was rather disconcerting that they didn’t know, and made me spell out Jasmine’s name. Afterwards it was explained that they were trying to find out whether a scan was needed for the recipient.

After a while I was moved back upstairs to the ward. Ruth came up to see me, which was lovely.

When Jasmine came out of surgery she was moved to the Paediatric Intensive Care Unit (PICU). When Ruth got back to Great Ormond Street hospital they were just reopening the building after a fire below the renal ward. Ruth went into PICU to find out how Jasmine was. The kidney had produced urine during the operation, which is a really good sign, and she had produced 4mls of urine by midnight. She was on a ventilator, and had lots of lines in.

Later in the evening Ruth came over to visit me at Guy’s, and showed me some pictures on Jasmine in PICU. It was great to see that she was OK.


Tuesday, October 20th, 2009

Jasmine post transplant

Jasmine received Neil’s kidney on Tuesday 20th. We would like to thank the teams at Guy’s and Gt Ormond Street Hospitals for their amazing work. Jasmine and Neil are doing well.

Neil: Independent Assessment

Monday, October 12th, 2009

Jasmine and Calista

Today we had our independent assessment. This is a meeting with a psychologist to ensure that you have not been coerced or paid to donate your kidney. We had to go to the Evelina Children’s Hospital for this, so that was another hospital to add to our collection. Everyone has to wait for their appointment by reception, which is a children’s play area and really noisy, the doctor only found us on the third attempt, as she was expecting Jasmine to look really ill and have a nasogastric tube. We had to take our passports, family pictures, and Jasmine’s birth certificate. We had a nice chat in a windowless room and stopped the psychologist when she tried to give Jasmine one of the toys. We have learnt our lesson there about sharing toys in hospitals. Jasmine threw up, and the psychologist said that it was good that we didn’t make too much fuss over it. The truth is we don’t really notice now when she throws up as she does it so often.

There was an article in the Sunday Times about living kidney donation. The article made the psychological assessments sound like a very long process. However, as I am Jasmine’s father there is a clear reason for donation, and it only took 30 minutes. It seems that the psychological process is a lot more involved for altruistic donation.

Ruth has been doing dialysis for over a week now, and my hands have nearly recovered from the latest rash. I have been putting hydrocortisone cream on my hands, and taking chlorphenamine anti-histamine tablets to relieve the irritation. I’ve stopped using soap and am getting through the E45 cream.

Last week we saw the grandparents. Jasmine got some new outfits (thanks very much!), one of which has Upsy Daisy on the front. Jasmine keeps waving at Upsy Daisy and trying to peel her off the front of her top. Her other new tricks are to blow kisses at complete strangers and to take her clothes off in public. Also, she can open the tempadots we use every morning to take her temperature and she can switch both the doppler and the timer on and off. She is very good at doing her observations.

We thought we were on top of everything, but today our toilet broke. We rang up our Home Emergency Insurance cover, but having no toilet is not an emergency, so we are now using our two PhDs to research how to fix toilets on the internet. No doubt we will be phoning a plumber tomorrow. Ruth is now cheating by phoning her Dad!

Post line break

Thursday, October 8th, 2009

Neil and the girls

After Thursday’s line break it took me a bit of time to calm down. During the whole thing I was quite calm but afterwards I roamed about the flat for a bit and wrote a blog as the adrenalin or whatever that keeps you going through a crisis trickled away. I got to bed around 2am and then I was up at 4am to feed Calista, and then up at 5am and 6am to see to Jasmine, and then up at 7am and 8am at which point we were just up!

Friday afternoon, the chemist rang to tell us that there had been a mix-up with our medicines, so the Vitapro wouldn’t be arriving until Saturday. Now, I have heard that before, so we went to the hospital to get another tub of Vitapro so that I was able to avoid having a big fit on Saturday when the chemist rang again and said that the Vitapro hadn’t turned up (ta-daaaa). I know mix-ups happen a lot so it best to have either a) lots of sleep or b) a plan B so that it doesn’t stress you out.

Sleep seems to be short on the ground at the moment so most of the weekend was spent trying to get into bed and catching up on some sleep.

On Tuesday, we went to talk to the consultant nephrologist about immunosuppressants and the like, post-surgery and to go over the whole transplant process. However, he had a throat infection and couldn’t speak. That in itself can’t be helped, but there was a bit of a mix-up so we were left in the waiting room for two hours before anyone told us. I got a bit annoyed as we hadn’t had much sleep and we didn’t have a plan B. Luckily, we had to have bloods done so it wasn’t a wasted journey.

And even if we had have had sleep, it wouldn’t have mattered because we were told to expect to a gruelling session of talking about transplant. People mean well but sometimes I wish they wouldn’t manage our feelings/expectations for us and build us up so that when we are let down it seems harder to manage. So, Neil and I went to a coffee shop to read the Transplant Chapter in ‘Renal Nursing’. We were scheduled a melt-down and by golly we were going to have one. Melt-down over, we were able to concentrate on eating chocolate biscuits and having a giggle.

I had to laugh in the coffee shop, as the lady sat next to us said, “Oh what beautiful girls. Look at all that hair.” And I said that our girls attract a lot of attention now and I no longer get chatted up. She laughed and said that it gets worse and now that her daughters are 27 she is just the old bag in the background. Oh no, my getting chatted-up days are over! Still, I had a good run.

Yesterday, Neil had to have an operation on his eye so was walking about with a big patch over one side of his face for the day. Jasmine thought that it was one big amazing sticker and was mesmerised by it. Later on that afternoon I got a full 45 minutes sleep whilst Neil kept an eye (chortle, chortle) on the girls.

Calista can roll over now and looks like she is trying to swim when on her front. She also sits in the bumbo quite happily. We are thrilled with Calista but each time she does anything we realise how tough things have been for Jasmine and how far we have come and how far we still have to go.

Next week, we have to meet with the independent assessors so that they can check that Jasmine is our daughter and no one is paying Neil to donate his kidney. I understand why we have to do this but as a parent I understand pretty well why people will do all sorts of things to get their children whatever they need to make them better.

Wot no fondue

Friday, October 2nd, 2009

So! Neil was going to write a blog about jabs week, as we have all had injections this week. On Tuesday, Jasmine, Neil and I had our flu jabs and then on Wednesday, Calista had her third set of immunisations and today, Jasmine had her epo. However, events overtook us tonight and we have just come back from the hospital after a line break.

Yesterday, I decided it was time for the first fondue of the season. I bought some cheese and made a loaf of bread so that it would be not too fresh and crumbly for this evening, and was so looking forward to dinner. Tonight, I fed Calista and gave her to Neil to get ready for bed, and she dozed off in her cot. I then got the machine ready early, injected Jasmine with her epo, got her washed and ready for bed and fed well in advance. And as she was a bit tired, I put her down to sleep so that I could get her connected before I settled down to my fondue. I love fondue.

But alas it was not meant to be. I finished the three minutes handwash, connected Jasmine to the patient line and then as I was about to untwist her connector-catheter (so that it is ‘open’ and fluid can flow in and out), the whole connector-catheter came away from the titanium connector. A tiny bit of fluid dripped out but I nipped her line closed with my fingers above the titanium connector (not touching the end of course, big infection risk!) and shouted for Neil. He ran about getting out the clamps and the alco-wipes and then we put the whole thing in a sandwich bag and put an elastic band around it to hold everything secure and rang the hospital.

Calista and Jasmine were both fast asleep in their cots, even with all the lights and the commotion and us jumping up and down. And as I had had a nice nap this afternoon I was the most clear-headed to get everything together quickly, put Jasmine in her buggy, and venture out into the night. Someone was looking after me, as I managed to hail a taxi at the end of our street (I have never ever seen a taxi down the end of our street in all the time we have lived here) and hopped in.

Once on the ward, our lovely nurses had the catheter soaking in Bettadine in no time and got the new connector-catheter on and took a sample which they whisked off to be analysed in the lab. Neil turned up soon after with lots of useful things for a night on the ward, unlike the time I packed for our last line break. Jasmine was excited not to be in her cot, once she got over the shock of waking up in a strange place and Calista was asleep in the sling on her daddy’s chest. Once Neil and Calista were organised, I nipped down to the coffee shop to get sandwiches, coffees, panetone and other snacks to wait for the sample results to come back.

But when I got back upstairs, the Jasmine’s white cell count results (23) had been rung up to the ward and the nurses had made up two nights of antibiotics in the dialysate. So, we were free to go! No need to stay overnight. It was all so quick. We got back here at half past ten and I made up the new machine and plugged her back in at about half past eleven. As I was connecting her it felt like we hadn’t been out at all.

So it has been an exciting night! I am sorry to have missed out on my fondue but so glad that Jasmine and Calista are back in their cots and Neil and I are about to get into bed. As Jasmine is on antibiotics I am hoping that it will clear up the last of her cough and mucus and stuff as she has had it a while now.

Tomorrow we will be watching a lot of Kung Fu Panda whilst we wait for the ‘End of therapy’ message as she won’t come off until after 11am, but I don’t care because it is so nice to sleep in my own bed and dream about the fondue I will have.

Jasmine has managed without her NG tube now for 45 weeks, which is really unusual for a renal baby and marvellous and I can’t believe it as I type it. She is so tenacious and drinks that milk day in, day out.

Our lovely girls

My gorgeous girls