Oooh Neil has just given her another 50mls and she slurped it down and licked her chops. He is just pouring another 50mls into her cup. She hasn’t quite learnt to hold the handles but holding the top is good enough for me. And she has just drunk that lot too. Hurrah!
Since Jasmine came home on Monday she has had to have antiobiotics and heparin added to her dialysis bags every night. GOSH sent us home with a day’s worth and then when we went back for the antibiotics (for the community nurses – why can’t they organise the antibiotics? They are the ones using them) they had made us up two more days so the community nurses didn’t have to come round until Thursday and then yesterday.
All was going great until Neil went to set up the machine last night and one of the bags split and fluid went everywhere. We rang the community nurses to get whoever is on duty today (Sunday) to come round as we need another set of bags for tonight.
The nurse who answered said that that wouldn’t be possible because the duty nurse today is the nurse who kept me waiting for three hours the time she came round to do an epo injection and on another occasion, refused to put heparin into Jasmine’s bags when GOSH requested it and Jasmine had to go without. And the story goes that I have said that I never want bad-attitude nurse to come round my house ever.
I was a bit annoyed at this untruth. I didn’t and wouldn’t say anything like that. I don’t care if bad-attitude nurse comes round as long as Jasmine gets the treatment she needs. So the nurse on duty rang off saying that she would organise a time with bad-attitude nurse to come round. She rang back half an hour later to say that bad-attitude community nurse refuses to come and do the bags so she will have come instead on her day off.
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.
Last night Jasmine was a bit pukey and managed to throw up all over herself at midnight, and then when I fished her out of the cot, all over me. So we spent some time cleaning her up and then we settled down to sleep around 1am. Then at 2am, her alarms went off: ‘Low drain volume’, which means that her machine is having trouble getting the fluid back out of her peritonium. Sometimes this is because her catheter line has a kink in it, if she has moved. Other times, it is because the catheter in her pertonium can’t reach the fluid in there and we have to change her position. At 2am I couldn’t see a kink so I picked her up and held her until she had reached her minimum drain target of 250mls. I went straight back to sleep and then at 3am, the same thing happened again. Then again at 4am and 5am and 6am and then 7am.
Consequently, Neil and I were very tired this morning. I was so tired that I dropped a new PD catheter cap on the floor and had to get another one out and wash my hands. Then we had to go to GOSH as we had a 9.30am appointment, so there was no chance of catching up on our sleep.
Jasmine had her abdomen scanned. Today we saw her kidneys, her left one has more or less disappeared and her right one is small. We also saw her bladder and womb and lots of vessels and we could see the big catheter right in the middle of her abdomen. It was another one of those days when we get to know our daughter inside out.
After that we had our usual clinic session and Jasmine has grown and put on weight, which is good. Then Neil and I had our blood taken. They will use our blood to check its type and tissue and see if it is a match and if we can be considered as living donors for Jasmine. After a night of no sleep and seeing her abdomen on an ultrasound, I was a bit teary as I know we are working towards transplant, but it was the first time in a long time that it has been mentioned, and today it became real for the first time.
And it is strange, because even though we live amongst a lot of hospital equipment at home, and we plug Jasmine in every night to her artificial kidney which beeps and hums and ticks over whilst we sleep, we don’t really think about it anymore. We can go whole days where we forget that she has no kidneys and that she needs a transplant. It is odd that we forget and can go about our daily business, loving our girl, and then today all the fears and hopes and memories from our time at GOSH came racing back. And I was overwhelmed. We have come a long way since her birth, a very long way, but we still have a long way to go.
This afternoon we came straight back from hospital all sporting cool plasters (well via the pub and a pint and some chips) and we all went for a lie down. Neil woke up first and put Jasmine on her feed pump for her afternoon feed.
[Just a dietary aside, please skip if you are sick of me moaning: I am still really cross that Jasmine doesn’t like milk – or the taste of anything milky like cauliflower cheese etc., – and the dieticians haven’t an alternative solution. I know how dialysis and medication can replace kidney function because the doctors have explained it to us. So why can’t the dieticians explain what Jasmine’s nutritional targets are and come up with an alternative to pumping milk down her nose? Or at least explain it to me so I could come up with something myself? This is the last time I will mention it, because I don’t think it serves any purpose to keep going on about it.]
Anyway, when Neil came in later on to check on us (well Jasmine, as I am quite good at snoozing) Jasmine had vomited up her NG tube and the milk was pumping out of her NG tube, all over her face, and she was lying in load of vomit and I was fast asleep. So Neil had a big fit, woke me up, and was furious. I could sympathise with him or I would have done had I not been so tired and opened my eyes to see a red-faced Neil jumping up and down on the bed. He calmed down, eventually. But it just confirmed our reasons for not having her on an overnight feed, especially now as she likes to chew the NG tube when she gets her tiny mitts on it!
Jasmine is very clever. She pulls on her catheter line and when she doesn’t have her nappy on, she trys to peel the PD exit site dressing off her abdomen. She regularly reaches over her head in the cot to check for stray syringes to put in her mouth or to pull baby wipes out of the packet and wipe her face with them. She chews anything she can pick up and put in her mouth, and she regularly rolls about the place searching for her tubes to tug. She will also kick us when we try to connect her to her machine on an evening and squeals with delight when we disconnect her on a morning.
She is also starting to feed herself. She can hold her cup and will wrestle with you for the spoon when we feed her veggies. So we give her the spoon of food and she puts it in her mouth. We are not sure if she knows it has food on it, but she eats the food. It is a bit messy this way, but it works, and is less of a tug-of-war, and she is so cute, even when she has covered us all in carrots.
Tonight we have propped her mattress back up in the cot so that she is lying on a slope in the hope that she will drain more easily with the help of gravity. We have also taped the catheter patient line to her thigh to ensure that her wriggling won’t cause the line to kink. It is drastic but we are pretty tired and will no doubt be fighting over who brings whom breakfast in bed tomorrow morning.
It seems like we have been tidying our flat forever and done very little else this past week. We have had to get rid of another load of books and put lots of stuff in our new cupboards. We had just got everything straight on Friday when our dialysis delivery turned up – a whole month of supplies (25 boxes of dialysis fluid). It is great not to think about stock takes and deliveries for a month but the supplies take up a whole bedroom wall and sleeping between them and the new cupboards makes us feel like we are sleeping in an insulated fallout shelter.
After our delivery we went out for lunch at John Lewis and tried Jasmine out in some high chairs. So much choice! In the end we came away with a booster one that you put on our dining chairs and tie her in. Jasmine loved trying out new things and being carried about looking at TVs and baby toys.
As we were browsing round the store, a woman pushed her five-months old baby in a pram passed us and stopped to tell us how cute she found Jasmine. I was carrying her in my arms and this woman had a big stress that her own baby wasn’t being stimulated enough and she wasn’t a good mother since her baby was awake but lying flat on his back. When I saw her later on (Neil and Jasmine were investigating flat screens) she was holding the baby, but five minutes after that when I passed her again (I had been to powder my nose) she had the baby back in the pram and saw me and said, “Oh I picked him up, but he is so heavy I had to put him down. I did carry him though, I did, I did.” She seemed a bit stressed about it all, poor thing. We were just carrying Jasmine ‘cos she likes to see what is going on and it never occurred to us that we should have an opinion about what this woman was doing with her baby. Lately though it feels like everywhere we go we are in some baby olympics with mothers all competing for the most stimulated, active baby gold medal.
On Saturday we tidied up the flat (My Godfathers, it was neverending) so there was lots of activity for Jasmine to watch from the safety of her doughnut (which she got from her Auntie Claire and Uncle Iain and loves, thank you) and she watched the footy as finally the new season has started. We are today breathing a collective sigh of relief as we don’t have to tidy up anymore and we have footy to think about on Saturdays and Sunday now for the next 36 weeks. Fantastic.
Yesterday we had overhead cupboards fitted above our bed in the bedroom. It was a full day job and the man arrived at 8am and set about sawing and hammering for hours. We had dismantled our bed and cot and took everything out of the bedroom on Monday evening and set Jasmine’s machine up in the living room, so it was funny to camp out and see what it would be like if we lived in a studio. I am quite glad that we don’t. We were a bit squashed.
Jasmine loved it! She didn’t have to go to bed in a separate room and could watch our new Setanta Sports channel to her heart’s content. Funnily enough, she went to sleep more quickly and made less noise than she does normally when we put her in her cot each evening. What is all that about then?
I am not one to get excited about fixtures and fittings, but the cupboards look marvellous. They are very swish and have fitted lights underneath. We are moving all our stuff back in the bedroom this afternoon, as we are bored of camping. Even if we did lie on the mattress drinking Pol Roger once the cupboards were up.
I took Jasmine to get her Hepatitis B injections to escape the noise and got stuck in the doctor’s waiting room with a mother and her big six month-old baby. The mother was amazed to find out that Jasmine was the same age and kept saying things like: “She is so tiny.” “What a tiny baby.” “I can’t believe she is six months old,” like Jasmine was Thumbelina sitting in the palm of my hand instead of in her buggy. Then came the usual: “What is wrong with your baby? What is that on her face?” which I nipped in the bud. Then we moved on to:
Mother: Can she sit up? (points at Jasmine)
Me: Not yet.
Mother: She can (gestures at her big baby)
Mother: Can Jasmine roll over? (points at Jasmine)
Me: Not yet.
Mother: She can (gestures at her big baby)
Mother: Can Jasmine recite Macbeth’s last soliloquy?
Actually she didn’t say that last bit but if she had have done, I might have enjoyed our conversation more. As it was, I was exhausted with the competitiveness of it all and thrilled when we got called in to see the doctor. I tried to run away but the mother insisted on coming with us to open all the doors ‘cos we need loads of help being so tiny and all.
I was telling Neil when I got back and the nice man putting up our cupboards shouted through that he bet that the other baby wasn’t as gorgeous as Jasmine. He is my new best friend. And then when he was leaving he left us a little ‘touch up’ squirty thing so we can squeeze paint all over the flat where we are generally scruffy, especially in the hallway where we put up a mirror using No more nails and it fell off in the night taking all the paint with it. No more mirror, more like.
We had a lovely time on our holidays. Jasmine got to meet her Grandad and Aunties and Uncles and cousins and my cousins. And we got to show her off to everybody, which was lovely. Jasmine loved all the attention and was happy to sit on everyones’ knees.
Jasmine saw the sea for the first time, and had her first trip round a supermarket sitting in a shopping trolley. She loved both and I loved doing the traditional baby things. In the north-east when people see your baby for the first time, they rub the baby’s hand with silver for luck and then give her the silver. It was nice to finally get to experience this. Lots of people stopped us in the street and supermarket to say that they thought that Jasmine was beautiful but no one – not one single person – asked why she was wearing the NG tube. Lovely, lovely people – friendly, not nosy. It was good to be home.
Doing dialysis in a different place was good too. Things took a bit longer than usual, but it was manageable. A change can be as good as rest and now we are back in our own little flat, we feel rested and pleased to know that with a bit of preparation, the world is our oyster.
Today Neil gave Jasmine her first epo injection without any supervision. It was great and took about two minutes.
We decided to go on holiday and visit my parents. So I wrote a list of what we use per day:
Our dialysis machine sits on a small bedside cabinet and we keep lots of medical equipment in the drawers, so we took that too. It was much easier to tape up the drawers, knowing that everything was inside rather than figure out what we needed to take out and put in another box. It also meant that we had something to put the dialysis machine on when we got there.
Our clinical nurse offered to check the list and when she emailed back said not to forget to take Jasmine which made me laugh because at the rate we were going, it was a possibility.
Neil bought a car seat and I spent two days packing things into boxes and ticking things off my list and piling the boxes into the corner. Then we hired a Vauxhall Zafira which has seven seats which we folded down to make room. After we made sure we had all the dialysis equipment in, we stuffed in all the usual baby stuff like bottles, steriliser kit, nappies, baby wipes, clothes, bibs, buggy, bumbo, Mr Tag-a-long, whose first name we have decided is Arbuthnot, and a picnic (teapot, cups, thermos, teabags, milk, cheese and branston butties, crisps, fruit) and we set off on our jolly-days. We forgot to take any coats at all and so prayed for sunshine on the way.
I was worried because the car was an automatic. When Neil and I went to Hawaii, a few years ago, we had an automatic and one day I was driving up a steep hill to the top of the volcano on Kauai and some mad couple behind kept driving up my bum. I forgot it was automatic and tried to change gear to get us going a bit faster but instead I put us into reverse. The woman had a big fit and gesticulated in a rude manner when I pulled into one of those passing spots. Dear me! So I wasn’t looking forward to driving an automatic again.
But I needn’t have worried, it was great. It was like driving a big bumper car with one foot on the big pedal and made driving in and out of London and 250 miles up the motorway relaxing. I am totally into automatic cars now. Except actually, when we arrived to near where I grew up, I saw my cousin and was so excited that I beeped the horn, forgot I had an automatic and tried to change gear as I pulled into the side street where she was. I nearly ran her down (Sorry, Marguerite). I guess I am best driving automatics on the motorway where there is nothing to get excited about.
We weigh Jasmine every morning and every evening to check that she is not retaining extra fluid, so it is difficult to keep her weight gain in perspective and I get quite agitated, especially when she vomits a lot. So today I put this t-shirt on her after another vomit and noticed that it is quite small compared to how she used to look in it. Aha! She is growing – it used to come down to her knees. I am thrilled.
On Friday, Sarah took Jasmine and I out to lunch in Soho and showed us a good time. And on top of that, Jasmine got some lovely gifts: a fabulous flowery t-shirt from Sarah and another soft woolly blanket from her Nan (thank you very much).
Jasmine’s cousin Matthew is one-years old and having a party today. We don’t think about how much fiddling we do on a daily basis, it is our norm. Today though, it would have fabulous been to throw some stuff in a bag, tuck the baby under one arm, hop on the train and go to the party. Unfortunately, a baby on dialysis and spontaneity just don’t sit together and even a trip to the park requires military style planning. So I guess we will just have to have a little party of our own in Matthew’s honour.
The terrible wind and screaming episodes that Jasmine was having seem to have stopped, and her vomiting has reduced. We totally ran out of bibs this morning as there are 10 drying on the clothes-horse. So Neil wrapped Jasmine in a towel and left her vomit to her heart’s content. Poor thing. We have taken her back off her overnight feed and we get a great night’s sleep. Jasmine then wakes at 6am and I prop her up in the cot, so that she can cough up her mucus (NG by-product boo hiss!) and then I give her morning feed. This seems to work really well.
Yesterday she was so quiet all day – no screaming fits, just singing and being a happy baby. I found it all a bit unnerving. I had forgotten these last few weeks, that cool non-screaming baby is her default mode. Neil said that she is calm and easy-going just like him and not like her mother, which is a bit rich coming from a man who after cooking dinner last night, did a lap of honour round the flat and then stood on a yellow-pages podium whilst I presented him with a medal. Dinner was tasty though: egg fu yung, but there was only a main course, unless of course you count the beer and crisps aperitif he organised for us. He even got me a bottle of Theakston’s Old Peculiar. Ahhh!
We are now the proud owners of an epi-pen. So if you ever go into anaphalatic shock after dinner round ours, we can stab you in the leg and phone the paramedics. Fantastic! We are very responsible hosts.