Archive for March, 2009

PD exit site

Sunday, March 29th, 2009

PD exit site

When Jasmine first had to have her peritoneal dialysis (PD) catheter inserted, the doctors kindly asked if we would like to have a look at someone else’s to get used to the idea. We didn’t want to (I think we were still in shock) but people going through the same thing as us have looked at Jasmine’s, which now I realise isn’t much help, as it is always covered with a plaster, and you can’t take the plaster off willy-nilly (well you can but you wouldn’t, because each time it is taken off there is a risk of infection).

And for people not going through the process of coming to terms with having a PD catheter inserted, they hear the word catheter and think that it is related to someone’s waterworks and don’t realise that a PD catheter is nowhere near the bladder but inserted into the abdominal cavity so that it can use its membrane (the peritoneum) to interact and clean the blood.

Yesterday, when we were doing a dressing change we got Grandma to take a picture of Jasmine’s exit site so people can see exactly what it looks like. We take the dressing off every two days to check for infection, and we use the non-touch sterile technique that the nurses taught us at the hospital to clean it and then put on a new dressing to protect it.

Normally, it is just the two of us doing the site, so we have never had the luxury of a third person or even felt relaxed enough to take a picture. We just keep tight hold of Jasmine so that she doesn’t wriggle and touch anything, especially not the exit site. No one touches the exit site, never ever, even if it is looking a bit crusty and it is tempting to poke at it.

The above picture is just of Jasmine’s abdomen and exit site, as we want to let Jasmine decide if she wants pictures of herself in the buff on the Internet and then she could earn some money out of them. So, to put the image into context: the catheter (blue tube) is 4mm wide and comes out of her abdomen. The silver bit (titanium connector) is 1cm wide and is connected to the cartridge which connects to the dialysis machine every night. We tuck the whole thing into Jasmine’s body-suits and trousers and frilly pants so that it is out of the way during the day and she is not tempted to tug at it, which she does with great force.

The catheter was surgically inserted into her abdomen when she was 15 days old and scar tissue holds it in place.

The first time I took off her plaster and saw the catheter, I cried. Now I see that the catheter, the dialysis machine and the process of peritoneal dialysis are miracles. I give thanks as I lie in bed next to the machine and feel comforted by the chugging and swishing noises it makes.

Back from the hospital

Saturday, March 28th, 2009

Grandma and Jasmine relaxing

Jasmine’s vomiting reached epic proportions on Wednesday night – all through the night – and her nappies were really smelly. I just thought she had a bug but Thursday night she was running a temperature for most of the night. So, on Friday we were down the hospital whilst Jasmine had her peritoneal fluid examined and the registrar examined Jasmine.

We have had a good few weeks without any unscheduled hospital visits. So, having to go immediately to hospital on Friday morning made me a bit teary – I guess that is one of the effects of two nights without much sleep.

Our lovely nurse was ready for us and we weren’t there that long. Afterwards, we went out for lunch and got a taxi back and we were just arriving home when our nurse rang to say that Jasmine’s fluid was fine (no sign of peritonitis). That was a bit of a relief, otherwise we would have been on the ward for the weekend.

I was so glad to be back home, even though her temperature was still raised, but knowing she was all clear on peritonitis, we felt comfortable giving her some Calpol and had one thing less to worry about. We rarely give her Calpol as it brings down temperatures and can mask the symptoms of peritonitis. We have also been carefully giving her extra fluids to compensate for all she has lost, even though her blood pressure has been in the 100s, but this can be a sign of dehydration, as her weight is down.

Today, I am hoping we have turned the corner. Jasmine slept most of the night, and this morning she was singing a little, and her temperature was normal (the second time we took it), so she must be improving, even though she vomited up some green-looking bile. Before, that she was looking very dehydrated and uncomfortable with dark rings around her sunken eyes, and she was very quiet.

Up until Wednesday evening, we had had a great week. We went to the library on Wednesday morning for a sing-a-long with the other babies. Jasmine enjoyed it but was overwhelmed with all the others. And then in the afternoon we went to baby yoga, which she enjoyed. She was captivated by a little girl sitting next to her and kept watching the girl instead of the yoga instructor. So I am wondering if she has caught a bug from mixing with the other babies and toddlers, and am desperate to wrap her up in cotton wool and never go out the house again. But, bugs are a normal part of a baby’s life and mixing with others her age is important, and just great fun. So we will be going again to enjoy ourselves and just hope she doesn’t catch too many bugs.

Grandma Stalker arrived Thursday afternoon so it is lovely to have her here. Jasmine has just thrown up all over her, so Grandma is currently getting changed.

Last night they watched ‘In the Night Garden’ and Grandma has become a fan, so I took a photo of them relaxing in front of the telly after our hectic day.

Mothering Sunday

Wednesday, March 25th, 2009

Jasmine and Ruth on the swings

I had a lovely Mothering Sunday – so different to last year.

On Saturday, Neil took Jasmine in the sling to buy me a card and she picked it herself – she got a big bright pink one which she proudly carried home. Sunday was lovely and relaxing. We shared my chocolates and admired my lovely flowers and then we went for a walk and ended up playing on the swings. Jasmine laughs when she is on the swings and has even got the hang of pushing her weight back and forward in the swing so that she can move the swing backwards and forwards.

Monday, we went for counselling to talk about the transplant testing we have been experiencing just lately. It is still scary and sometimes overwhelming, but it is the key to a different kind of life, and we just have to be brave. It would help if there were some guarantees, but like all things in life, there aren’t.

Afterwards, we went for a coffee and Neil spent ages trying to take a picture of Jasmine and I. In the end he gave up as we were far more interested in chewing our bibs, styling our hair and watching the world go by.

Jasmine and Ruth in Starbucks

I am starting to look and feel rather enormous, and don’t remember being this big with Jasmine, but of course I must have been. This baby seems to kick a lot more than Jasmine so we are currently wondering if it was because Jasmine is just such a cool laid back baby or she just didn’t feel too well.

Poor Jasmine has been vomiting loads just lately, even by her standards. It is very wearing as I am filling the washing machine twice a day – yesterday it was three times. I am so used to the vomit everywhere I don’t even notice peoples’ appalled stares when we are out in public.

Doing the shuffle

Wednesday, March 18th, 2009

Jasmine does the shuffle

Neil sat Jasmine down on the floor this morning. After a while I looked down and she was over the other side of the room clutching the kitchen table leg. Amazingly, she had shuffled across there on her bottom. Once she saw us watching her, she continued to shuffle about and laugh.

This afternoon we took her for some more immunisations and then we walked about in the sunshine. Her legs are a bit red tonight, but so far she seems ok. She didn’t have a nap this afternoon since we were out and she didn’t want to miss anything. She flaked out after Neil gave her some milk a while ago. And now I am going to go and connect her.

Neil: Living donor test day

Tuesday, March 17th, 2009

Today was a very long day. I went down the hospital for a full battery of tests. I had to do three swabs to see whether I have MRSA and another urine test and blood sample. Then I had a GFR test, which involved having a baseline blood test, followed by an injection of some radioactive substance into my left arm, I then had to go back after 2, 3 and 4 hours to give blood through a cannula in my right arm to see how well my kidneys are functioning. I also had a CT scan, chest and abdominal x-rays, and an ECG. I also saw the nephrologist, who was brusque and didn’t mess about.

It is strange going to the hospital when you are healthy. Everyone looked very ill. After six hours of wandering around the hospital and waiting in windowless rooms I was quite fed up. Walking past the palliative care department wasn’t very cheery either. Ruth brought Jasmine down mid-morning to give me some moral support, which was really nice. However, in the afternoon there wasn’t room in the CT scan waiting room for babies, especially when Jasmine started to scream after I put on a blue surgical gown, which stressed me out. So, they went to wait in the main entrance and when I finally came downstairs Ruth was a bit tired as Jasmine had vomited and pooed her way through all the spare clothes – including Ruth’s.

Yesterday Jasmine had her clinic at GOSH. Her dialysis has been reduced by half an hour to 12 and a half hours, so that will be brilliant. Her fill volume and last bag fill were both increased as well. Jasmine had her folic acid dose increased, and swapped her phosphate binder from calcium acetate to calcium carbonate to see whether it helps with her vomiting. The doctors and nurses got a first hand demonstration of Jasmine’s vomiting whilst we were there. We also did a dialysis adequacy test, as Jasmine has been on dialysis for a year. We had to take¬† in a sample from Jasmine’s drain bag to see how well she is clearing various waste products.¬† We went to the pharmacy to pick up the prescription and then we got some lunch.

Jasmine hasn’t been sleeping so well on dialysis lately. She has been waking up at 4am or 5am and crying and vomiting for the rest of the night. This has been very tiring for whoever has been on dialysis duty looking after her. Hopefully she will get over it, or the change in dialysis will help.

Action baby

Sunday, March 15th, 2009

Jasmine keeps waking up early and wanting extra milk, which is just amazing. She also rolls over and over in the cot and either dangles her legs through the bars, or kicks all her covers off so that she can find the long patient line, wrap it around her legs and bring it to her mouth to chew on it.

We have been looking for sleeping bags which fasten down the middle so we can put the catheter out of the front, as she has outgrown her other ones. She has two which have a zip down the right-hand side which used to be fine before she turned into action baby. She had one which had a zip down the left-hand side but we had to cut it open down the right-hand side and put velcro fasteners on it. And then after all that effort, she has outgrown it. And each time we washed it the fasteners would fall off and the edges would fray and bits of the stuffing would fall out and I would ask out loud why they don’t design baby sleeping bags for babies on dialysis. And Neil would say that there isn’t a market for it.

As she gets bigger, it gets harder to find the right sleeping equipment, as she can’t wear pyjamas, well she could but we would have to cut them off her, if she vomited or pooed on them in the night. I don’t fancy waving a pair of scissors near her or the patient line, especially when tired. And if you don’t have her in a baby-gro she can grasp the patient line in her toes and bring it to her mouth that way and she can also pull her nappy off and tug away at the catheter and dressing. And she can’t wear those all in ones without buttons as they are impossible to get off in the night without waking her up. Mmm, just had a thought, I might just start pinning her in – but then I am worried about safety pins. No, I know, I might sew some press-studs on these sleeping bags. Now there is an idea.

Today, she ate some carrots and potatoes, then later on a chocolate finger and then after that a couple of spoonfuls of ice-cream, which was nice on her teeth, as she is teething again. This is the most she has eaten in months and months, and it was fantastic. She has managed without her NG now for 14 weeks and on some days behaves like she is hungry and cries for milk. At least we think she does. With new behaviour, it takes a while to establish a pattern, and truly believe that is why she is crying.

This afternoon she was full of energy and keeps trying to take her weight on her feet when you hold her, so we put her in the babywalker and she can now push herself backwards across the room. Our carpet hampers her progress, so this is no mean feat. She screws up her face and pushes with all her might and then looks amazed that she has moved herself. We put her on the kitchen tiles and she was spinning herself round and round in the walker quite fast and was so thrilled that she was squealing to herself for at least half an hour and clapping her hands at her progress and admiring her reflection in the glass oven door.

She woke me up at 5.30am this morning and was sick quite a lot as she has had yet another cold. All horrible mucus. So, this afternoon we were both having a nap. She woke up first and as Neil was changing her nappy, I woke up and as I sat up, she waved at me and said something that Neil and I both agreed sounded remarkably like ‘Hi Mama’. Later on she was shouting ‘Baba, baba, baba’ to herself for a long stretch of time and waving to people out of the window.

Southgate tube station escalators

Yesterday, we took the tube, originally with the plan of going to the end of the line. Jasmine kept sticking her feet out of the buggy and pushing the buggy backwards away from the glass partition between where I was sitting and where the buggy was and away down the tube even with the buggy breaks on. Neil jumped up and grabbed the buggy before she sailed down to the other end of the carriage.

You can tell we don’t go out much. We got out of the tube at Southgate and were amazed. The station is built in the Art Deco style and is funky and the escalators have the original lighting. Neil and I were ‘oohing’ and ‘ahhing’ for ages and wandering about the station. And that was before we went into the big world outside of the tube and out to lunch. Later, we came across a massive Asda which sold everything – my goodness, we were in there for hours, and we only bought a handful of things. It is just that there are no supermarkets near us, so it was a novelty. By the time we get to transplant we are going to be so weird, living in our small world of dialysis as we do.

Having a sing-song

Thursday, March 12th, 2009

Jasmine with her balloon

The other day, Jasmine and I were coming back from the doctors when I spotted a sign saying ‘Women’s Day’. I followed the signs to the local community centre and went in. Inside there were different stalls with information about activities in the local area for women and their babies.

I had a chat with a lady about play centres, as I am still undecided about going or not even if Jasmine can’t join in with sand and paint and water. The lady referred me to the Early Learning Foundation program set up by the Government, which is apparently imperative to growing babies. And it made me ask: Is there nowhere in society where the Labour Party hasn’t felt the need to interfere? And then, against my better judgement, I got really stressed about Jasmine’s development and felt like a bad mother who is not doing enough to ‘hot-house’ her baby. And I resolved there and then to be like Rick Moranis in the film Parenthood who teaches his toddler Nietzsche, advanced mathematics, and kung-fu.

Luckily, after a couple of days common sense prevailed. I am doing exactly what my mum did with me as a child: singing, playing, chatting and reading, as well as going out and about and mixing with others. And I have turned out ok. I have even managed to get a PhD without the Labour Party’s help (which is probably why the cheeky buggars address me incorrectly as ‘Mrs’ in their correspondence).

Anyway, at the centre they had a man singing songs and playing his guitar, so we joined in. Jasmine bounced up and down as she recognised the songs: The wheels on the bus go round and round (her Grandma Stalker sings this to her down the phone), If you are happy and you know it clap your hands (a firm favourite), Row, row, row your boat and some others. And then he sang Heads, shoulder, knees and toes, which I had totally forgotten about – what a great song – and Jasmine loved it. We have been singing it to her ever since. She is great fun and taps her head when we sing. I guess with a bit more practice she will work down to the rest of her body.

The guitar man was thrilled to get some feedback, as the other kids there didn’t recognise any of the songs, but they did enjoy kissing Jasmine, which she objected to, so I had to wrestle them off in between clapping and the like. My goodness, toddlers can move fast. I felt like the West Brom goalie. Later, as we got ready to leave, the guitar man gave her a giraffe balloon as he had really enjoyed having a No. 1 fan and was sorry to see us go.

So, we are going to go to try out a weekly sing-a-long session and investigate what is on offer at all the centres, but I will not worry too much if it doesn’t work out, regardless of Labour’s learning-what-not (Neil: Ruth, please shut up about the Labour Party). Jasmine’s safety is paramount and getting out of the house and somewhere for 10am is fine and necessary for hospital appointments, but it is a massive commitment for a bit of singing.

Yesterday was a bit of a tiring day. Jasmine was so pukey she needed five changes of clothing and I needed three and that was just the afternoon. So, today when we went round a friend’s house and I fed Jasmine and she wasn’t sick at all (well, just a posit), it was very nice. She even gnawed on a shortbread biscuit before rudely hurling it across the room (I was impressed by the distance though). And later she got friendly with my friend’s baby and held her foot, which has to be the start of a beautiful friendship.

Jasmine has started to turn herself on her side on a morning when she wakes up vomiting. She is so clever to have figured that out. It is sad that my poor girl has had to learn how to position herself when vomiting, but I am so impressed by her ability to adapt.

The other morning she woke us up earlier than usual by running her cup up and down the cot bars, like prisoners do in the movies. I picked her out of the cot and gave her some milk, which she guzzled down. She must have been hungry and wanted us to know. This morning she flipped herself over and dangled her feet through the bars, as if she was about to climb down and onto our bed. She is fantastic and I never cease to be amazed by my clever, gorgeous girl.

Happy Blogging

Saturday, March 7th, 2009

Jasmine and Neil in the pod

I am giving up moaning today, as it is not useful. It makes me feel tired and recovering from moaning takes a lot of energy. To say nothing about how poor Neil has to listen to it all. But the plus side about moaning is that if you have time to moan then nothing much is going on. And nothing much going on means that that we are having a good day. Hurrah!

The other day we received through the post some leaflets about our local ‘stay and play’ centre which I got momentarily excited about until I read what was on offer for her age group: sand and water games and painting. Not a great idea for someone who has a catheter sticking out of their abdomen. So, I felt a bit sad, but then reminded myself that we will be able to do all that and more such as giving her a bath and going swimming when Jasmine gets a transplant. And moreover, she will have the energy to run about and enjoy it more. So, we just have to be patient and do all we can to encourage her to grow.

Today the sun is shining again which is lovely so we are going to go out in a bit and look at the bright sky and some of the lovely crocuses which are out in full bloom in the park.

Waiting for a delivery

Friday, March 6th, 2009

Jasmine in her stripes

Last week Neil dressed Jasmine in all of the stripey things that she owns altogether. Once he sat her down, he said that she looked a bit mad since the stripes didn’t go together. I said that I thought she looked really cute, and he said that I was as mad (how rude!). I think she looks lovely!

Today we are waiting for our Baxter dialysis delivery. I am a bit worried as our helpful concierge broke our doorbell again (he is still upset about Jasmine – he looks like someone has died everytime we walk through reception, which makes me want to go over, slap him round the chops, and shout: ‘Pull yourself together, man’). We told him to stop trying to fix our doorbell which isn’t broken after we got another concierge to fix it. But hopefully all will go well as it is not snowing today like last month and we have a fixed time and we won’t be on the phone. I know I should stop stressing but sometimes it is hard and it is easier to stress about the minor irritations in life than other things.

Jasmine is absolutely wonderful. This morning whilst Neil was washing her, she was shouting ‘Howzat’, so she is obviously into sport in a big way. Her other words are ‘Abba’ and ‘Ebb’. And once she said ‘Mama’ and I was thrilled. She waves when we take her off to bed and she lies in the cot rubbing her hands together, either rehearsing for Lady MacBeth or she thinks constant hand washing and handcream rubbing is normal.

We have been doing yoga together everyday and Jasmine claps when I put my hands together in Namaste. She also likes to rub my big bump and taps on it when she feels some kicking. The first time she was really alarmed but now thinks it is a good game to play.

Yesterday, I was round a friend’s house and Jasmine insisted on eating a Cadbury’s Chocolate Finger which was brilliant, as she has not wanted to have any food in such a long time. So, I didn’t mind when she rubbed chocolate all over my clean trousers. I am going see if she wants anything more nutritious today.

I tried taking Jasmine out to the corner shop in a sling too, but it wasn’t too successful. I had her on my hip in the sling and she kept leaning sideways to rub my bump and tug my cape and once I had a full shopping bag that didn’t help. Outside the shop luckily, there were a couple of workmen on a fag break who thought I was funny and didn’t mind fastening my cape, picking up all my items, and putting Jasmine’s hat back on. Although the buggy is a nuisance it is easier to go out and about with her in it, especially since I am 29 weeks now and getting quite round, so I think I will stick to that and stop imagining that life is easier without it.

The last week or so, it has been quite tough, thinking about transplant. It is exhausting. Neil was ill the other night – severe headache and feeling sick, and we only had calpol in the house to take away the pain (and that is enough to make anyone feel sick). In the end I had to resort to rubbing lavender on his temples (got that from my herbal remedies book) and spent the whole time thinking ‘Good Lord, I know why they invented neurofen’. Then a couple of nights later I ate something that made me violently sick and poor Neil had to tidy up after me and get me to replace all my fluids. He then phoned the hospital as we had a similar thing when I was pregnant with Jasmine where I was vomiting and felt unable to eat for three days. For a long time afterwards we felt that the illness had caused her kidney failure as it coincided with all the bad news. It wasn’t the case at all – her kidneys never formed properly – but when you are tired and you need some reassurance, it is great to be able to ring the midwife and know exactly what we should be looking for.

It is quite scary when something happens to one of us, as we are totally alone – with no one else to come and help – and that is a frightening thought. On a day when I have lots of energy it makes me really angry – violent, violent rage! People like to talk complete nonsense such as: ‘how sad/angry they feel’, ‘how hard things are for us’, ‘how terribly difficult their lives are but it is nothing compared to our in-their-eyes-really-sad life’. But very few people offer anything sensible that would be of help to us and most don’t even listen when you talk to them, as they are too busy telling you how they think you feel and giving you rubbish advice. But, the one thing that makes me want to strangle someone is their pity. We don’t want anyone’s pity, thank you very much. Having spoken to others in similar situations, this is a common complaint. Talk is cheap and people have difficulty dealing with anything out of the ordinary so instead they like to twitter on, thinking that they are helping. Or, worse still they like to tell you dreadful stories (worse than yours, Ruth) about people they know – ‘top that stories’ – and don’t seem to understand that knowing that someone is worse off than me isn’t going to cheer me up, it makes me cry to know that someone is suffering.

Practical help is thin on the ground. People just don’t want to be a part of anything unpleasant and might offer you two hours of their time on a day that suits them because they imagine it would be cute to look after Jasmine. They have given little thought to the fact that she doesn’t know them as all those visits I was promised, when we first came out of hospital and I was alone all day learning to cope with a baby on dialysis, never happened. Jasmine might not like spending time with strangers. And can these people deal with her constant vomiting or what would they do if her catheter snapped? And then when you say ‘thanks, but no thanks’, people take umbrage. Better still, other ‘helpful’ people tell us that we should think up things for people to do so that they feel better. My Godfathers! I am not running a day-centre here. Jasmine’s care is paramount and I don’t have the energy nor the time for other peoples’ feelings – it is not their life, they are not affected in the way that we are, and why do I have to demonstrate what our daily life is like before they begin to understand anything? Whatever happened to a) taking my word for it, or b) having some imagination. I don’t see why I have to be the one to help them deal with the way they feel about Jasmine. And no, I am not angry about what has happened to Jasmine, as our counsellor keeps asking. No, I am truly angry with, and feel let down by, so-called family and friends.

There have been a couple of people who have understood calmly and without fuss what we go through and have said specifically what they can’t do but have offered to help in other kind, useful ways at great inconvenience to themselves, including taking time off work, and coming to stay with us, which is humbling and brilliant, and moves me to tears. I am very grateful to these people and will be taking them up on their offers when transplant time comes around. And I will remain indebted to these people forever.

Hurrah! The Baxter man has been, like all the Baxter men, he was very nice and jolly, so now I am going to reorganise and count my PD cassettes, a very soothing activity, and then we are all going to go and do something very nice in the sunshine for the afternoon.

Oh yes, we went to GOSH on Monday for bloods and counselling and several people said that Jasmine looked fantastic. I was thrilled, as sometimes when you are tired, you do get a bit paranoid and think: ‘Am I doing everything correctly?’ So to hear our medical team say that Jasmine looks good is the best thing.