Jasmine Stalker-Firth

We have just got back from spending the weekend at Great Ormond Street Hospital (GOSH) after Jasmine’s PD catheter broke.

I connected Jasmine on Friday evening about half-past seven. We had had a nice day wandering about and had gone to the pub for a quick pint and an early dinner. Then we had come home to put her on.

She was on her initial drain and was a bit vomity as she was coming to the end of a feed. So, I picked her up to put her in the little seat which we keep at the end of the cot. When I looked down, her line had snapped clean in half and fluid was pumping out. The whole connector part (shown in the picture above, the dark blue part is normally always covered) had broken off. I got hold of the line and shouted to Neil to get the clamps, which we keep in a little pack in case of this kind of emergency. We clamped the line and wrapped the end in an alco-wipe. Then we got on the phone to GOSH and ordered a cab to take us straight there.

On arrival the nurses put us in one of the cubicles on the ward. They snipped the end of the line, soaked it in bromine for three minutes, and attached a replacement connector. Then, they attached a specimen bag in order to get a peritoneal fluid specimen to send off to the labs. Jasmine had lost most of the fluid in there by then, so with a bit of tipping her this way and that (we all took turns), they managed to get about 2mls.

A little while later, the results came back and her white cell count was 120. Not alarmingly high, but the cut-off point is 100. So, erring on the side of caution, Jasmine was put on continous peritoneal dialysis cycling for 48 hours. This meant that she was attached to her machine all the time. The dialysate had antibiotics in it (and will continue to have them in for a total of 14 days) and heparin, as the nurses had spotted some fibrins. Continous cycling hopefully prevents any infection and the development of peritonitis - something to be avoided at all costs when on PD.

I stayed on Friday night. Being there was a reminder of how quickly, if you are not super careful, you can end up back in hospital. And we were up quite late which made me tired and teary. It takes a while to organise a cot, prepare a PD machine, especially with antibiotics and heparin, and then Jasmine had to have her bloods taken and had to be examined by the doctors. And then her machine was alarming for the first cycle, and the lovely nurse looking after us had to listen to me chuntering on for a while, so it was 2am by the time I got to sleep.

Saturday

Neil arrived the next morning with coffee and croissants at about 10am and I had been up already for four hours thinking that it was going to be a long, long 48 hours.

As it turned out, the weekend went by in a flash and we had a lovely time. Jasmine seemed well in herself and the nurses took care of everything, as they always do, they even fed us when there was left over food on the trolley. Some of the nurses who looked after us when Jasmine was born popped into see how she has grown. And everyone said that we had done well to keep Jasmine out of hospital for so long. It was like being in a hotel with a load of your best supportive highly trained dialysis friends doing all the stuff you normally have to do whilst you enjoy room and laundry services and read books and snooze on and off all day.

On Saturday night we were moved over to the quiet side of the ward. I was going to go home, but since there was only Jasmine and Neil staying on that side I stayed too. I slept in a cubicle next door to theirs and slept really, really well. Poor Neil was up half the night, as Jasmine had to have her machine swapped over after 24 hours and then the machine was alarming with ‘low drain’ because people often get a bit dehydrated being on dialysis for so long and start absorbing all the fluid. During the night the nurses come in and check Jasmine’s blood pressure and temperature. They have to do this on a drain, so they often clamp the bags to stop her filling back up. (The kidney patient guide’s website has a really good animated explanation of how PD works.)

Sunday

On Sunday afternoon, Jasmine was taken off her machine for four hours, so that she could have an extended dwell (fluid left in her peritonium) and then we went off for lunch at Pizza Express. Jasmine had a fantastic time sitting in a high chair sucking the edge of the table and throwing bits of pizza dough on the floor. After that, we all went to the bookshop and then back to the hospital.

Before putting her on her machine around 6pm, the nurse took another specimen and when that came back that night, the white cell count was four, which meant that we had been very lucky and it seems that she hasn’t developed peritonitis. Neil slept in the cubicle next door and I slept with Jasmine. Since she was on her normal program she didn’t beep so I had a good night’s sleep and I didn’t even notice the nurse popping in and out doing blood pressures and temperatures.

Monday

Today we sat about drinking coffee and reading the papers until the doctor discharged Jasmine at midday, at which point we were ready to come home. We had all run out of clean clothes. Jasmine was wearing surgical gowns and I was wearing my new t-shirt with the tube map - a present from Neil - teamed with his underwear and my wedgy sandals. One of the nurses complimented me on my new stylish look.

Tonight Jasmine is back in her own cot, and we are back in our routine: Neil did the dressing change, prepared the machine, and connected Jasmine. We have washed all our clothes which we stored in a big bag of baby puke whilst on the ward as dialysis tends to make Jasmine vomit more. We enjoyed our mini-break and our dialysis respite and the company of our lovely nurses, but, it is good to be home.

Sleeping over with Jasmine was good fun last night. Neil left early around 9.30pm and I watched Match of the Day and pottered about and gave Jasmine her last medicines before getting bed.

Through the night Jasmine’s machine alarmed a couple of times and then she vomited at 6am. But it was a nice night. We slept well. I didn’t think I was an early morning person, but this morning I stood on the balcony around 6am and smelt the fresh air and the promise of a new day and realised that I might have been missing out all these years. Lucky for me though I will be seeing many more of these early mornings as Jasmine seems to be in a bit of a 6am vomit routine. At 7am her food pump finished and she was wide awake ready for cuddles so I fished her out of the cot and we sat in the armchair and one of the lovely nurses made me a cup of tea.

We came home around 11am to find Neil having a shower after just getting up. We are going to relax this afternoon and follow Jasmine’s lead. She is currently having a post-prandial nap.

I spoke to my mate Wayne the other day who made me laugh for hours. He said that he hadn’t been reading the blog lately because Jasmine seemed to be so much better. Previously, when lots of terrible things happened, he was riveted and read the blog every morning but now it’s all a bit dull so he has gone elsewhere on the web to get his kicks.

Neil came home a bit cross-eyed this morning with Jasmine. Jasmine was smiling happily. Neil hadn’t had much sleep at all in the night but was glad he practised the alarms. Jasmine had been sick a couple of times this morning so he had spent since 6am cleaning up her sick and changing the cot.

I had spent the morning at home sorting out our bedroom and bathroom. We can fit in the dialysis machine and all of the dialysate and hand washing scrub stuff and everything we need in both places so that our life is easy. So after lunch we were all ready to try out my organisation. as we were scheduled to change Jasmine’s PD dressing. This involves several trips to and from the bathroom to the bedroom for handwashing, easy access to various bits of sterile swaps, antiseptic and what have you, and somewhere clean and flat to put Jasmine. It went really well. Neil did the dressing and said it was a bit easier at home, since we have control over where to put things. The only problem is where to keep the paper towels. We think we may have to screw our new paper dispenser to the wall and make our bathroom look like a public convenience.

I am staying at the hospital tonight so we will take Jasmine back in a while. Indiana Jones is on the telly so I can watch that while Jasmine snoozes and Neil can organise the dinner, though I am bit bored of pizza.

We (Neil, Jasmine, and I) went shopping today and bought a new buggy and baby bath from Argos. We set the new buggy up in Argos and put the bath in it and pushed it back to the hospital. Jasmine was in the ward buggy watching us as we fiddled about with wheels and raincovers. It was a lovely sunny day so we went for coffees in the nearby cafe and watched the world go by and lots of people stopped to tell us how gorgeous they find Jasmine.

Tonight Neil is staying at the hospital so we had pizza and salad for dinner again as it was my turn to go for takeaway to eat during Match of The Day. I gave him training on our new food pump, which meant that I pumped water all over Jasmine’s cubicle and Neil laughed at a lot at my training techniques. We eventually got the pump working and hooked up to Jasmine with nice fresh milk for the night.

Since I was on fire with my training, before I left I gave Neil more information about the alarms on the machine. Generally if an alarm goes off you check the lines that they aren’t clamped or kinked and then you give Jasmine a gentle shake or turn her on her side. The alarms normally stop and the machine carries on dialysing Jasmine. Neil then ordered me home because it was getting late and my explanations weren’t fantastic and I had to get the baby bath back.

Ruth got trained on how to use the feed pump today. Jasmine will be fed overnight, so should sleep well. Her pump can be put in a backpack when we go out and about. It is all very well designed. Ruth was trying out the pump with orange juice, so that she could see where the juice was in the lines.

We are getting faster at doing all the tasks required. Ruth disconnected Jasmine, and set her machine up. I changed her PD dressing and connected her in the evening. Jasmine’s blood pressure is fairly stable at the moment, and she is putting on weight, so things are looking good at the moment.

Last week we got our food pump deliveries. Last night we brought home the dialysis machine in a big black suitcase and today we had all our dialysate and other medical supplies delivered. We have everything we need to care for Jasmine for two weeks. It is in our living room at the moment. We just need to find places to put it and organise ourselves.

Today Jasmine and I are at home and Neil is at work. Jasmine is currently snoozing in her cot and I am considering a nap myself as I am so tired after being overexcited at the prospect of Jasmine coming home. If all goes well we should be able to bring her home next week. I can’t believe it and start to cry everytime I think about it.

Jasmine has realised that her hand is connected to her arm and keeps staring at it and going cross-eyed. She also supports her own head for extended periods of time and leans back when she is in my arms so that she can stretch and have a good look around (and make me look like I don’t know how to hold her properly). Now when she smiles she looks directly at me which is more polite than that smiling to herself routine that she used to do.

I stayed over at the hospital last night with Jasmine as part of the dialysis training. Neil kept us company until late so by the time he got home he was so tired he got straight into bed. I enjoyed our a girlie sleepover. Neil got us pizza whilst we watched the footie and Jasmine, who was completely flaked out in her cot.

After Neil left I managed to fall asleep but it was a busy night. I seemed to hear alarms quite a bit and nurses rushing up and down dealing with them. At one point they were switching lights on and off to find the source of one random alarm that didn’t seem to belong to a patient, so inbetween sleeping and wandering about, I spent quite a bit of time watching Jasmine sleep and looking out of the window at the ambulances coming and going.

I finally got into a deep sleep around 2am after changing Jasmine who had vomited a couple of times. Then just after 3am the alarm on Jasmine’s machine woke me up. The nurse on duty had made Jasmine’s machine alarm on purpose so that I could get some practice dealing with alarms when half-asleep. I don’t know how she managed to sneak in without waking me when the door to our cubicle is really heavy and squeaks a lot. I gave Jasmine a shake to untangle her line and unclamped a line on the machine. Luckily this seemed to do the trick and I was able to go back to sleep. It was good practice and I feel much more confident when dealing with the machine.

This morning Neil arrived with lattes and croissants which perked me up no end. Neil disconnected her and then I went off to Westminster to give a lecture. I was wondering how I would manage, but it went ok and I enjoyed it.

I got back this afternoon and did Jasmine’s machine and we went for a cup of tea downstairs and watched the world go by. She sits wide-eyed like Yoda making wise grunting sounds. I can now chat to myself to my heart’s content as Jasmine sits on my lap. People think I am chatting to her - little do they know that she isn’t really listening.

We moved from one side of the ward to the other today. It is used by patients and parents to be semi-independent and to get used to doing everything before they go home, but still have access to the nurses when they have a question. It is really quiet on this side and I miss chatting to all the nurses and having them pop their heads round the door to ask me if I need anything.

Today I took a sample from Jasmine’s catheter - direct from her tummy. I also set up her machine and connected her without anyone supervising us at all. Although I have done her machine many times I was convinced I had done it all wrong because no one was watching, but it worked fine when I plugged Jasmine into it. Neil and I did her PD dressing together this evening when he came in from work as it is a two man job. Everything else we can do separately and take turns, so that we get a break.

I took Jasmine out for lunch today and someone asked me if Jasmine was my baby. How weird. Whose baby would she be? Still it was better than the other four people who asked me why she has a tube up her nose. My new answer: because she needs it.

Today we took things a bit easy. I made up her medicines for the day, which took a while, as she is on quite a few! Ruth did Jasmine’s PD dressing, we changed it unsupervised. Ruth had it all under control, so that is one thing that we have sorted. We took Jasmine’s 3 pm milk, and went to the park. Coram’s field only allows adults in if they are accompanied by a child, so it was the first time we have been in. It was good to be out in the sunshine all together. We went for a coffee, then took Jasmine back to the hospital. Ruth set up her dialysis machine with three bags and connected her.

Neil and I went in early today and disconnected Jasmine and did her medicines. Then we took her to St Pancras Station to watch the trains and have a glass of Billecart-Salmon in Searcy’s. Jasmine was not really impressed and fell asleep in the buggy. We brought her home and have spent the afternoon lying about. Jasmine is sleepy today after her vaccines, so feeding her is a bit of a struggle. In the evening Neil set up her machine with two weak bags, and one strong bag, which was rather difficult (Neil made me put this last sentence in *sigh*).