Jasmine Stalker-Firth

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.

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.

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.

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.

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!

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.

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.

My gorgeous girls

Jasmine, Calista, and I have had coughs and colds, which in itself wouldn’t be too bad. However, Jasmine on dialysis is more vomity than usual and wakes up at 4am all congested which leads to vomiting and so we are starting the day very early at the moment. She is attached to the machine for 12 hours now which is less than we used to have but can still seem like a long time.

So, we have a portable DVD player which we put in her cot to distract her from the waiting and the vomiting. Calista enjoys watching it too whilst we wait for the magical message ‘End of therapy’ which starts our day (along with disconnecting, observations, washing the vomit out of her hair, etc). Kung Fu Panda is our favourite even if we do watch it twice every morning before we get up.

Today we went along and met the transplant surgeon. He seemed very nice but, he had to tell us about the not nice risks of transplant: loss of donor, patient, kidney. We have been aware of these from the word go but somehow when someone is sitting telling you in measured tones, it is frightening.

I just had to stop typing there as Jasmine was throwing up in the cot as she is back on the machine now. When you see her vomit as violently and painfully and frequently as she does, you know that she needs Neil’s kidney and we just have to press on.

Then we got onto the practicalities of the transplant process. They do a lot of clever stuff during and after the operation which was explained to us but now as I write this blog I am a bit hazy on the actual details of what I was told (I think I was in shock) and will have to read up. But just as a quick example, Jasmine will more than likely have to have a blood transfusion during the operation as they need to keep her blood pressure up. They wash the antibodies out of the blood so that her body doesn’t react to the new blood or vice versa and cause rejection and she will also be on a massive dose of immunosuppressants straight after the operation which will be reduced gradually until they get the right dose.

So to protect Jasmine which is the most important thing, we are following the surgeon’s recommendations of no visitors to the hospital whilst Jasmine is an inpatient and no public transport when Jasmine is an outpatient visiting the hospital daily.

After this meeting, we were exhausted so we got a cab home. I think I may have cried all the way, Neil was a total star, as usual, and Jasmine threw up on her little pink book in which we record all her feed, vomits and poos. So the book smells just like our carpet which I am now going to clean again.

It was delivery day again today. It hardly seems any time since our last one. Time is flying by. We had the 8:00 am to 12:05 delivery slot and the guy came at 10:00 am, which was brilliant, as we had time to get everyone fed and dressed before he arrived. He got the 23 boxes of fluid and other supplies unloaded and into our flat very efficiently.

The cuff that we use to take Jasmine’s blood pressure sprang a leak this morning. It was due to be changed at GOSH for a larger size anyway, but we were hoping to hang on until next week. As it was dressing day today Ruth changed the exit site dressing, and did the swab that we were given on Monday. She took the swab out of its tube, dipped it in some sterile water, then rubbed the exit site where the catheter comes through Jasmine’s skin with the cotton bud end, and put the swab back into its tube. At the hospital they will see whether any bacteria grow on the sample. Ruth then set the machine up straight afterwards.

On the way to the tube to go to GOSH we went to the doctors to sort out some blood results for Ruth that have been taking ages to be sent back by UCH. We made appointments for all of us to have flu jabs and picked up a prescription from the chemist.

At GOSH we swapped the blood pressure cuff and dropped off the swab and were in Pret-a-Manger for lunch by 2 pm, feeling very satisfied with our days work!

Jasmine had her dialysis clinic at Great Ormond Street today. It was five weeks since the last one, which is the longest time that we have had between clinics.

We phoned up last week to check whether Jasmine had done all her pre-transplant work-up. She still needed an electrocardiogram (ECG) and an echocardiogram (echo), and we got an appointment at 9:30 am on Monday. To avoid trying to take two buggies through the London rush hour we got up and out of our flat early to get on the tube for 8:15. We went for a lovely coffee and almond croissant until it was time for our appointment and then went to the Cardiac department. Unfortunately we had to wait a long time for the ECG and the echo machine broke down.

The ECG involved sticking ten electrodes to Jasmine’s chest, which she tried to peel off as fast as the nurse could stick them on. The results were normal, and Jasmine helped to peel the stickers off.

When they got the echo machine working again there was another battle with Jasmine to get some different electrodes stuck on. The technician couldn’t get a clear scan, so went to get a more senior sonographer. The senior sonographer turned on the TV, tuned in to CBeebies and had the scan done in five minutes. Jasmine’s heart looked normal.

During the echo Ruth had to take Calista to her hospital for the results of her scan that she had in July. Everything was normal, and she was discharged, which is great news.

After that we had the usual dialysis clinic. Jasmine is growing well. We had already done the the exit site, so the nurse had the great idea of taking a swab and doing it at home. Jasmine threw up everywhere while getting her bloods done, which was rather messy.

The consultant was very appreciative of our graph of weights and blood pressures, which was nice. Most people give us a strange look. When we told her about Jasmine joining in while we do our yoga she said that she would love to be a fly on the wall in our house!

When we first got home from hospital with Jasmine, dialysis seemed to take all day.  It was overwhelming.

As time has gone on and we have gotten more confident and it has become part of our routine, dialysis takes about an hour or so a day when you add up everything you do.

We have to do it in three parts: disconnecting on a morning followed by observations, setting up the machine whenever during the day, and connecting on an evening following observations.  Then on alternate days we clean Jasmine’s exit site and change the dressing.  Once a week we give her an epotein injection with a thin needle.  If she was over three years old, she could have an epo-pen but since she isn’t, we use a needle and inject her subcutaneously.

Today, I was on duty and I had to set up the machine, clean the exit site, and inject Jasmine.  It was  10.07am when I began my first one-minute handwash and at 10.52am I had finished everything and was just picking up the packaging.  We were trained to  throw everything on the floor as we go along so that we are not tempted to touch any of the ‘dirty’ packaging with our scrubbed clean hands.  I was amazed  and will probably never do it as fast and well as that again so thought I would write it down here to remember.  The dressing looked really neat too.

Some days it is not like that at all and everything seems much bigger and scarier than normal.  I will touch the wall by accident so that a three minute handwash takes six minutes or the dressing won’t be all lined up nicely and then I fret that I might have touched Jasmine’s skin by accident or something (not that I will have because you know when you touch something you shouldn’t).  The other week the machine just didn’t look right.  The bags had a funny patch on one of them and I touched the patient line by accident, and in the end, I just threw the whole thing away and started again, as I knew I wouldn’t have slept that night for worrying about infections.  It was the first time I have had to throw away the bags and cartridge off a machine which is ready for the night in the whole time we have done dialysis.  I felt weary at the thought of a load of new hand washes and repeating the set up but it was the right thing to do.  With the experience that I have now of doing dialysis,  my one rule is do everything as best you can so that when you get into bed you can stop worrying long enough to go to sleep as you know you couldn’t have done anymore.