Jasmine Stalker-Firth

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.

Jasmine has been getting much faster at shuffling across the floor. She sits upright and wiggles her way around the living room. We have to keep a much closer eye on her now.

Calista had to go for her second round of immunisations. She is now 6.14 kg (13 lbs 8 oz) and tracking the 75th centile. She is doing really well and starting to look around and smile. We think she is teething already, as her front teeth are visible through her gums and she is drooling. Ruth has been carrying Calista in the sling, which she likes, as she always goes to sleep.

The other day I was sitting on the floor feeding Jasmine and managed to bend my big-toe nail back, causing it to bleed. Ruth got out some sterile water and dressings and dressed the wound, which was great. I went back to feeding Jasmine, and Ruth promptly stood on my remaining toes!

We got Jasmine a mini buggy that she can put her dolls in. Now she shuffles over, puts piglet in the buggy and shouts what sounds like “I did it”. Then she pushes him over to the scales that we weigh Jasmine on every morning and evening (Jasmine is now 10.3 kg or 22 lbs 11 oz). She takes piglet out of the buggy and puts him on the scales (piglet weighs 0.1 kg). We thought that she was going to do his blood pressure and temperature next. It was only then that we noticed that piglet actually had a plaster on his foot. Jasmine had stuck one on to copy her dad.

Last year we had a line break in Jasmine’s catheter and ended up doing two weeks of antibiotics over our wedding anniversary, so this year we were prepared, and began celebrating a week in advance. In the end nothing bad happened, and by the time our anniversary arrived we were worn out celebrating!

On Thursday we met Great Grandma Billie again, before she headed back to the USA, and all the Firths. We had lots of tea and cakes at the Wellcome Collection by Euston station.

Everyone took lots of photos and much time was spent trying to get Jasmine to look in the right direction – she was much more interested in looking at strangers and trying to pick chocolate cake off the sofa.

Yesterday, we got our dialysis delivery, all 22 boxes of dialysis fluid and lots of other stuff that we need everyday. We also got our shopping delivered as we go through 10 million nappies and babywipes nowadays and it is so nice to get them brought to our door. Once the girls are old enough, we are going to go out and plant a whole forest to make up for the massive landfill of rubbish we are currently generating.

Today, we are feeling all organised and are having a calm day. This is mainly because Jasmine slept through the whole night and woke up at 7.30am for the first time in about a year. It was fantastic. I put Calista down at midnight and got unbroken sleep until Jasmine woke. Neil made us a lovely breakfast (pain au chocolat and latte) and then we disconnected Jasmine and I fed Calista whilst Neil did Jasmine’s obs and washed and dressed her. And because we felt so rested we pressed on and I did Jasmine’s exit site and the machine and were all done by 10.30am. Amazing!

This week Neil went to see an podiatrist to get his feet fixed – poor man is dropping to bits – and I went to the chiropractor who has said that she doesn’t need to see me for three weeks as my pelvis has stayed correctly aligned, which is very good. As we didn’t have much in the way of appointments, we had time to catch up on all the exciting stuff like cleaning the windows, dusting, and hoovering round, and tidying up as our new bed no longer has room under it to store things. But because as we have traded in our king size bed for a double one we have room to wander about now – well not walk sideways all the time – so that is good.

We have had a big debate about Jasmine’s hair. Neil wanted to cut it so that it is easier to keep clean and tidy when she vomits (all the time) but I have resisted as she looks so cute with her lovely curls. So yesterday, I put her hair into pigtails which she wasn’t too keen on and kept pulling them out.

We often see other girls Jasmine’s age with hats, sunglasses, socks, shoes and hair accessories in, sitting happily in their buggies, and wonder how their parents manage it as Jasmine thinks everything needs pulling off and throwing on the floor. So we have given up putting anything on her so she will just have to look like a mad hippy (er like me then).

Jasmine has started to talk and is really funny. She babbles on in a way that sounds like conversation with the odd recognisable word. The other day, Neil took her blood pressure and said, ’90’. And then Jasmine said what sounded like, ’88’. We laughed for ages. She also likes the telephone and gets hold of it, presses a few buttons and then holds it to her ear. She can shuffle very fast now. She shuffles on her bum right across the room taking her opportunities where she can to grab things off tables or open cupboard doors before we catch her. She is great fun.

I am a bit sad today as we have decided to sell our chaise longue. We just don’t have the space for it anymore and it is much easier to sell this beautiful peace of furniture than to move house. It has been lovely to sit on and imagine all the people who must have sat on it over the years (it is supposed to be Victorian) and I am sorry to see it go. So, if you know anyone who wants to own a beautiful antique chaise longue then let us know.

We went out for lunch yesterday with Jasmine and Calista’s Great-Grandma Billie and Great-Uncle Johnny who are over visiting from the States. We had a lovely time and were sorry to say goodbye at the train station.

Today we are waiting in for the delivery of our new bed as our current one’s springs are broken because we sit on the end of it to feed Jasmine and we stand and scramble on it to get things out of the cupboards overhead and to get us in and out of it. There isn’t much standing room on our bedroom floor.

It is nice to be sitting down and not doing anything today as we have had a busy week. It started on Sunday night. Jasmine was up most of the night screaming, either because she was ill – she had an upset tummy, or because she didn’t want to be in the cot, or because the dialysis was tugging on her insides as it does when she is dry. It is hard to tell what was causing her discomfort, but she did quite a bit of vomiting. Normally, I would get her out of the cot to lie with me on the bed. But I was too tired to have her next to me as you have to be really careful not to lie on the patient line. And just lately I have had several dreams about line breaks, which was either my subconscious telling me that something wasn’t right or I can predict the future.

The following morning we were exhausted when we went to clinics (we walked down as I am feeling so much better hip-wise to avoid squeezing on the tube in rush hour). Clinics went well and Jasmine had an abdominal ultrasound. It took quite a while as she was wriggling a bit. But the technician said that her vessels look ok.

We came straight home and got Jasmine on early (5.30pm) as she was due back into hospital the next morning at 7am for her MRV. I was lying down on the bed and Neil sat entertaining Jasmine in her cot as she was outraged to be back in it and attached so soon. Then she went on her first drain and Neil kept staring at the patient line saying, “There is something not right here. There are lots of bubbles in this line. Why are there bubbles?” When she came to the end of the drain Neil picked her up to shake out the last few mls to avoid any alarms and then as he put her down he noticed that her leg was wet. It is amazing how you forget how tired you are when you notice that something isn’t right. I leapt out of bed and got a clamp out of the drawer as we stared down at the patient line and saw that there were bubbles BUBBLES coming out of the line. In my panic I forgot all protocol and clamped the line (without an alco-wipe) using the wrong end of the clamp. My main priority was to get the line shut. Neil got me to hold Jasmine as he got another clamp and an alco-wipe and clamped it further up and then wrapped the hole with an alco-wipe, then we phoned GOSH. During all of this Jasmine and Calista were both screaming their heads off.

After that Neil did a minute handwash, wrapped the catheter in an alco-wipe, opened a mini-cap and then did a three-minute handwash and disconnected her. He is very calm in a crisis. I was holding both screaming children.

Then Neil got Jasmine ready, called a cab and took her to the hospital. Jasmine was thrilled to be out of the cot and waved bye-bye. Calista and I stayed behind and collected together a bag full of clothes and toiletries for Neil and Jasmine. And organised some simple dinner we could eat on the ward.

By the time Calista and I arrived at the hospital Jasmine had a new connector-catheter on and had had a sample taken. The catheter had split just above the titanium connector so she has a rather short catheter now as the lovely nurse had to snip quite a bit off. On the whole, the catheter is great, as it is soft which is perfect for her exit site and her skin but not so good where the connector sits. We think that the weight of the titanium connector has strained the plastic so that it has split, which was where the bubbles came out. But it did well and lasted seven months. It was also better than the other connectors which seemed to split the plastic and caused us problems in the past.

Anyway! We were very lucky as Jasmine’s white cell count was 26 so she didn’t need to go on continuous cycling for 48 hours. She just had antibiotics in her dialysate bags for two days. Neil and Jasmine stayed on the ward so she could go straight back on dialysis and be taken off a bit later the following morning. Calista and I stayed until midnight and then got a cab back. And then we came back the next morning with milk for Jasmine and breakfast for Neil.

We had a nice day on the ward. It was wonderful to hand the care over to our lovely nurses, and to see everyone and to talk to other parents in similar situations. Neil took Jasmine down for her MRV, he said that she didn’t struggle this time as they put the mask on her. And when Neil went down for her after she had had time to recover from the general anaesthetic, she looked fine, as if she had just been for a nap.

Neil said that my bag-packing in an emergency is rubbish – he had two pyjama tops and no bottoms, he had footspray (I always think my feet get hot on the ward) but no nappies or dresses for Jasmine but it was full of various mad things. So we think that I should have an emergency packing list rather like my going away list which works so well.

Looking after Calista has shown us how ill Jasmine is and how time-consuming it is to look after her, especially with all the dialysis procedures we need to do each day, to say nothing of the vomiting that poor Jasmine has to go through before and after feeds and medicines. In contrast, having a new born baby is no work at all. It is the easiest thing in the world and lovely but makes me feel sad that Jasmine goes through so much each day just to stay stable. So, with this new knowledge, I am finally facing the prospect of transplant as a positive thing for Jasmine. I said as much to the nurse specialist down the hospital and she said that we must be, at this point, chronically tired with the daily grind of dialysis. I think she is right. Neil found himself in A&E at Moorfields Eye Hospital the other day and had to sit and wait for three hours. He said that it was bliss just to sit and wait and have nothing to do. It is funny that our idea of a good day out is to sit in A&E or on a hospital ward with someone looking after us.

That said, I am so grateful that we can do PD at home and that Jasmine is with us every night, so I don’t care how tired we get. It is magic. Words cannot express our gratitude for the wonderful team in the dialysis unit and on the ward at GOSH who support us so brilliantly and work so hard to keep Jasmine stable.

We went up to visit my in-laws for the week, so that they could meet Calista. We also needed a break, as we had not been able to get out of London for months. While we were visiting, a family friend came round and said, “A change is as good as a break”, but we weren’t so sure, as we had worn ourselves out getting there and were too exhausted to enjoy ourselves.  However, once we got home, after recovering from the 500 miles round trip, we did really appreciate seeing the Grandparents and the break from our routine.

The day we travelled we all got up at 6am to disconnect Jasmine. I then went to pick up the largest hire car we could find, a Volvo V70 estate this time. Ruth had been packing for 48 hours and going through her checklists. She got the girls ready while I loaded the car. We left at 11:00am and arrived at 6:30pm after many feeding and vomit stops. We then had to unload everything, set up the machine, make the milk, and get everyone to bed. We flopped into bed ourselves about 1am.

Overnight we had more alarms than usual. Jasmine wasn’t at the correct height relative to the dialysis machine, so didn’t fill up properly. The machine kept alarming until it finally stopped working altogether, so we phoned the renal ward at GOSH. We tried a few things, then they suggested turning the machine off at the mains, and back on again. We thought we were talking to IT support by mistake That worked and Jasmine got through the rest of the night okay.

The next day an administrator from GOSH phoned up to schedule an MRI for Jasmine. We weren’t expecting the call and she was going on about MRIs, GAs, AM surgery lists and booking a bed on the ward for the overnight stay. As she wasn’t medically trained she couldn’t explain what she was talking about and freaked us out. A medical registrar phoned us back and explained that Jasmine has to be prepped on the ward as she needs a general anaesthetic for the MRI scan, so she stays still. We have the option to stay overnight, but we will get up early and go in for 7 am.

The day before we were due to come home we had recovered enough to try to enjoy ourselves, but then we had start packing all over again to get ready to leave.