Archive for December, 2009

Merry Christmas, Happy Boxing Day

Saturday, December 26th, 2009

 Calista in the hotseat

Merry Christmas! We had a lovely day and couldn’t believe it was finally here after all the waiting. It was fantastic to be at home for Christmas. Jasmine got a bit overexcited opening the presents so we had to have a break and lunch and carry on later.

Thanks to everyone, the girls got lots of lovely presents. Jasmine now owns every last bit of In the Night Garden merchandise. And Calista has the cutest range of snuggly things for bed.

We all sat together for lunch, Calista in her new chair. Calista enjoyed chewing on some carrots and parsnips. Jasmine didn’t really want anything. It is going to take a while to get her going, which is a bit tough, but it is a really great day when we have time to think about how to encourage her to eat and drink on her own.

Poor Jasmine was so tired by the end of the day, she had been a bit tired all day, but refused to go for a nap. So she totally conked out during her last feed.

 Jasmine in the hotseat

Today, we were all up at 5am, as Neil and I gave up sleeping at that point. Calista woke up at 11pm, 1am, 2am, I put her down at 3am and then Jasmine woke up at 4am, and then at 5am, we gave up and got up. At 6am with everyone full of breakfast we all got back into our bed and slept until 9.30am. Fabulous! Three hours unbroken sleep, even with little feet sticking in my ribs, was fantastic.

Calista crawls around all the time after Jasmine and can’t bear for Jasmine to be out of her sight.

Jasmine has discovered washing up. I was sitting at the sink with her whilst she did the washing up today as she still can’t stand alone. Every so often she would pull herself up to see better. I think with a bit more washing up she will learn to stand as watching her pull herself up was really encouraging.

Neil: Two weeks off

Wednesday, December 23rd, 2009

Jasmine had clinics down at Great Ormond Street yesterday. We had been booked into the wrong clinic, but still got through in record time. I think that all the other patients were stuck in the snow, so the clinic was very quiet. Jasmine is doing well, and all her bloods are stable, so there were no medicine changes and we get two weeks off. Amazing!

Jasmine’s screening for Epstein-Barr virus was positive last time, so her Azathioprine has been stopped for the moment. This is a very common virus, and stopping the immunosuppression will allow Jasmine to fight off the infection. We haven’t noticed any particular symptoms so far, so hopefully it isn’t making her feel too bad.

During the clinic Calista demonstrated her new motor skills by pulling out Jasmine’s NG-tube. She had got hold of it and pulled it out in a flash. Calista seems to be obsessed with it at the moment, so we keep having to find new ways to hide the tube in Jasmine’s clothes. We didn’t have a spare tube with us, so we had to go up to the ward for some supplies. One of the nurses kindly offered to put the tube back down. Jasmine got a silk tube this time, which is softer on her nose, and lasts four weeks, instead of one for the plastic tubes.

On Monday I went for a second follow up appointment at Guy’s hospital. Everything looks good, so I don’t have to go back for a year! My baseline creatinine level appears to have moved up after the operation from around 70 to 130.

We got all ready for Christmas early, in case Jasmine was hospitalised, or we had a last minute hiccup. Now we are just waiting for the day to arrive! Thanks to everyone who has sent presents for us to pile under the tree.

If you can’t say anything nice….

Friday, December 18th, 2009

Our new sofa

… I should not say anything at all, a wise man told me today, in between telling me not to be so moany. Everyone has problems of their own. He is right of course.

I am feeling much better today as I slept well (albeit it, up at 1am, 2am, and 5am for the girls) and Neil let me have a lie in. When I woke up again at 9am, Jasmine and Calista were out of bed and dressed. Neil still can’t pick up Jasmine so she has taken to throwing herself out of bed or off the sofa when she is bored of waiting for me. I haven’t seen her do it yet, but she is pretty smart and does it without hurting herself (!?!).

The community nurses left two big boxes of syringes at the concierge as well, so that is great. We are stopping one of Jasmine’s immunosuppressants as she has a virus (EBV) which GOSH have been monitoring. She needs to fight it off so we will see how she gets on. She looks ok today, but it is a bit of a worry, but GOSH are on the case, and have been looking out for it since transplant, so that is brilliant, they are brilliant.

We have been shopping to St Pancras. Neil and I had half an hour to buy each other gifts, since we never go anywhere without each other, and it is a bit difficult to do secret shopping. It was a bit of a giggle. I am impressed with my shopping, Neil less so, but then he cheated by buying me things on the internet too. Phew!

So, we are all ready for Christmas, including a homemade cake. Neil’s mum has made us a Dundee cake, which was very kind of her, as we were too tired this year to cook our own.

Our new sofa

Jasmine’s latest thing is to shout ‘Have it!’ when she wants something. It is funny and sounds like something a football fan should shout during a match. Calista crawled across the rug this afternoon and looks like a baby commando. We are so impressed!

Dr Jasmine

Thursday, December 17th, 2009

Dr Jasmine

We bought Jasmine a medical kit the other week and she is obsessed with it. When she wears the stethoscope, which is all the time, she coughs when she puts it on your chest, or foot, or wherever she wants to listen. She is hilarious.

Today Neil took Calista out, and Jasmine and I were alone. It was lovely but weird because for the first time all I had to do was play with Jasmine – no machines, no vomit to clean up, or anything. We did some jigsaws and some cube building and she listened to my chest and coughed to see if it was clear and then we had a drink of water and we put some milk down her tube (she has to push the syringe herself). And even though we had had a bad night – Calista was out of sorts and we were all up until 2am – there was no telly on today, which is what we used to do when we were really tired, as we had to conserve our energies for the medical stuff. Now I can use what energy I have playing with Jasmine and it is great.

The community nurse rang up yesterday to see if Jasmine’s nappy rash had cleared. I really do wonder what these people do all day. Nappy rash! I told her that I really wasn’t worried about Jasmine’s bum and no she didn’t have a rash and that was six weeks ago, and she has had two surgeries since then. So she asked if I wanted anything else, I said that I needed some 5mls syringes. Today, she dropped me off 20 (and that was after I had insisted that I didn’t need her to come round and look at Jasmine’s bum and could she please leave them with the concierge). Twenty syringes is, for us, one day’s supply. So I rang up and had a big fit as I cannot believe that someone would bring me one day’s supply.

I think I have got post-transplant stress. Now that the big things are calming down, the little things are becoming a big deal. It was the same in clinics the other day, we had to wait over 45 minutes before anyone did Jasmine’s blood pressure and weight (which is not unusual in clinics) and you have to have that done first before you go on and see the renal team so you are just stuck in the waiting room, losing the will to live. Anyway, I complained and moaned and generally didn’t behave myself and I have felt bad ever since.

So, when I was moaning today down the phone to another community nurse, (the nurse who had left two – alright 20 – syringes with the concierge had gone home at 2pm), she said that I should get some respite – basically, a nursery nurse would come round to play with Jasmine (Jasmine, only as she is on their chronically ill list – actually the nurse called her disabled, but no one would keep an eye on Calista, as she is not on the chronically ill list). She said that I could go shopping with Calista.

Now, that isn’t my idea of respite, I hate bloody shopping, and it is the usual sort of nonsense we get from the community nurses. My idea of respite would be for me to get an afternoon nap. Or, I would want respite from doing medical stuff, not playing with my child. But, we have been through this argument with the community nurses before so I give up. They never give us what we ask for, only what they think we should have. I won’t even start again with the nonsense they offered us when Jasmine was on dialysis, but it didn’t include them doing anything medical.

And, it was the same after transplant, when we asked them for sterile gauze and sachets of water to wash her wound. Their response was to pester the ward, then our doctors, and then the chemist, and then we got sent round some saline solution and some wound packs which had plastic gloves and aprons in – no sterile gauze or water.

One of the nurses told me once that their job is to support mothers (note no mention of fathers) and save them a trip to the hospital. I would rather a trip to the hospital any day of the week to pick up my syringes and sterile gauze, as I would get what I want and I wouldn’t have to put up with a load of nonsense and find room in my house for medical supplies I don’t want.

Neil has just asked me if I am typing a festive blog and I have said no, I am slagging off the community nurses. Twenty syringes I ask you! I would laugh if I wasn’t so annoyed.

I am so tired. I feel like I have just woken up from some long medical nightmare to see us all with big scars on our stomachs and I felt very sorry for us. I know I shouldn’t, I know it is great that we are all at home wearing our war wounds. But, tonight I feel older and sadder and changed, and sadder still that we had to do it alone.

You always hope that in a crisis people would step up and become great troopers, but they don’t. In a crisis (your crisis) people are stressed and behave how they always behave, but worse, because they are stressed and in shock and tell you that you are so brave, so self-sufficient, so capable, or they are so busy with their own feelings they say horrible things. So, you are left alone to get on with it, in quiet desperation. Whilst everyone is busy stressing and wringing their hands and talking nonsense, you are alone at the sink, scrubbing your hands, or up in the middle of night mopping up puke, afraid, wishing that someone would come and give you some comfort.

We have a week off from clinics, which is great and which is probably why I am feeling the way I do. It is the first time, in a long time, that I have space to think.

Jasmine is looking great, Neil is feeling sore, Calista is chewing like mad on everything, and I am feeling really bloody angry and weepy all at once, but it is time to give her the tac, so the way I feel will have to wait, which is a good thing, hopefully when I get round to thinking again, I will have let it all go.

Christmas is coming, the quorn is getting fat

Saturday, December 12th, 2009

With my girls

It was freezing and foggy outside yesterday when we took a lot of old medicines round to the chemist. Then Baxter rang up and we are getting our dialysis machine picked up on Monday, which is a bit strange. For better and for worse, that machine has been the centre of our world for the best part of the last two years.

I packed it away a couple of weeks ago because we need the space and I took all our old cartridge sets and mini-caps and drain bags to the hospital so that they could use them for training. Otherwise, the whole lot would have been destroyed as you can’t use them on other patients even if they are sealed (which they are). The whole packet containing 60 or whatever has to be delivered whole so that you can see nothing has been tampered with. Fair enough, if someone delivered me half a box of mini-caps or drain bags or said, “Oh you can have these, they are left over.” I wouldn’t have touched them.

I am starting to really appreciate not having to do dialysis. I feel a bit teary thinking about it. Jasmine just wakes up on a morning now, no vomiting. She always says, “Ahh,” like she is really pleased and surprised to have woken up in her own cot. And then I pick her up immediately and do not have to check for any tangled lines or mop up any vomit. And then I can just carry her into the other room and not have to do any handwashes and disconnecting and getting out fresh caps and worrying all the time about the catheter.

Altogether at last

She looks so much better. Everyday we used to change her clothes at least five times and the cot at least once (if she rolled off the towels we had her lying on so that we could change them quickly and avoid her lying in her own vomit) and we used to constantly mop up the carpet and the floor. All different now. Most of the time we get through the day with the same outfit. Amazing!

We put our tree up and the girls were fascinated it by it. We have put it up on top of lots of dialysis boxes (Baxter don’t want them back either and they are a bit heavy to take to the hospital on the tube for the moment) out of the reach of little hands. And then we decided to take lots of pictures which was funny getting everyone to pose and then laughing at all the pictures.

Us in front of the tree

I love Christmas. Neil always buys himself a huge turkey and hundreds of chipolatas wrapped in bacon, enough to feed the whole street. In contrast, I spend so much time wondering what I should eat, as it should be good because it is Christmas. I get overwhelmed and end up with something ordinary like two quorn sausages or I buy some new style pretend turkey and then Neil and I have the same conversation:

Me: Mmm, taste this, it is just like meat.
Neil: No thanks.
Me: Go on, just a little.
Neil: No.
Me: Go on, go on, you will love it.
Neil: Oh alright.
Me: What do you think?
Neil: Mmm, yes it does taste just like meat, mmm, tasty.
Me: Really does it?
Neil: No Ruth, it tastes like cardboard.
Me: Ah.
Neil: It is horrible.
Me: Ok.

So, I can’t wait to have this conversation and have Christmas crackers and party hats. Although we couldn’t wear them last year as Jasmine screamed and we think they reminded her of the blue hats and scrubs that surgeons wear.

Our tree looks lovely with all the carefully wrapped gifts we have been sent. Thank you.

Us in front of the tree again

YO! Sushi

Friday, December 11th, 2009

Jasmine in YO! Sushi

We went on an epic journey yesterday. We were supposed to just go to clinics in the morning but you know how sometimes things get out of hand.

We got ready to leave at 8am, get on the tube and then be near GOSH for breakfast in a cafe. But on our way out of the door, Jasmine threw up (she is still full of cold and mucus, so a cough on a full tummy can be a bit dangerous). So, by the time we got to the tube (now on public transport hurrah!!) it was after 8.30am, which normally means very busy. Incredibly, it was worse than that, the line was part suspended and it was running with severe delays and no one could physically squeeze on. One woman with a baby in a buggy said, as she came back up the lift, “It is a hell hole down there.” I think she watches too much Eastenders.

After half an hour of trying to get on a tube, we went back upstairs and struggled out of the station (loads of irate people were making themselves even later for work by queuing up to get their £1.10 back for being on the platform). We went for a coffee and croissants next door. Jasmine could only have water by then. It would have been really tough having a two hour gap for the Tacrolimus just at that moment with us starving, if she actually ate something, but she sat there putting the croissant to her lips and then gave it to me and clapped when I ate it.

I love eating and someone clapping encourages me even more, which isn’t great. I have lost weight these last weeks, only because I haven’t had time to eat – as I have found over these last two years chocolate biscuits are a great comfort – and being in hospital so much means I have been away from the biscuit tin. So, I was a bit dismayed to see myself looking such a porker on the above photo and blamed Neil for making me look fat. He said that I am a bit of a Porker-Firth and should Photoshop myself thin. I would if I had the time!

Anyway, eventually we got back downstairs and on the tube, and two men very kindly helped us with the buggies at the other end. By the time we got clinics it was after 10.30am and then there was a bit of a queue. Thursdays are busy as there are loads of transplanted kids, which is lovely to see.

We had one of the transplant surgeons do our clinic, the one who had done Jasmine’s last surgery, which was great but I was curious and asked if it wasn’t a waste of his time, as I felt a bit trivial asking him about prescriptions and the like. He said that if he didn’t do clinics he wouldn’t get to see his patients and he would end up as a technician plugging in kidneys and not interacting with people. He still follows some of his patients, even 20 years later. I was so touched by this answer. It makes me want to rush out and do something really useful with my life.

Afterwards, we went to Yo! Sushi. Jasmine loved it. She figured out how to split the wooden chopsticks and to pick up food with them. She is a genius. She loved the conveyor belt and was very excited by it all.

Calista was less impressed with the whole thing.

Calista in YO! Sushi

We were in there a while, and I gave Jasmine some milk. Unfortunately, she coughed during the feed (she is totally tube fed at the moment) and threw up in my miso soup. It was funny as it looked the same with a bit of vomit in. I suppose that isn’t funny at all, but after seeing her wound ooze discharge, and bloody urine, and bits of her bowel pop out, and various bits of her on ultrasound scans and holding her whilst she is having a load of blood pulled out of her tiny veins or being put to sleep before major surgery, and Neil having arrows drawn on him where they are removing his major organs, a bit of vomit in my soup is light relief, I can tell you.

These last weeks have been something. I got a bit weepy the other day as we were relaxing at home for the first time in what feels like forever. It is still all new with different meds and a new routine. And it is disappointing that Jasmine won’t eat or drink anything and we are tube feeding her. But it is a good day when you are at home and all you have to stress about is the NG tube. I think anyone who has had all the surgery that she has wouldn’t be up to eating.

She is back to shuffling frantically and dancing and generally being her funny, beautiful, clever self which makes me want to hold and kiss her all the time, which she doesn’t want, of course. So, I give Calista some loving instead, because she is totally into being held with her teething and her dribbling, and a bit of vomiting too since she has had the same horrible mucus cold. Unfortunately, she wants that all through the night too. I am so tired at the moment, I could sleep on a washing-line (as my Auntie Yolande used to say).

Once we left Yo! Sushi we had some shopping to do and then went for a coffee and so by the time we got home it was after 4pm. And then we had to wait (or try not to wait) for GOSH to ring up with the blood results, which is always a bit of a worry. As one of the last times they rang up, we had to go into hospital immediately, which was great from a care point of view, but made me want to faint with fear.

But yesterday, they rang and said that we didn’t have to go back until next week which was just marvellous. And then we had to run about doing a load of stuff and we got the girls to bed and then they woke up three times each and went back to sleep and we finally got into bed at midnight. And then my night shift began with Calista. But we had a good night and she only woke up three times.

But I am sure once we get through this phase, things will calm down and everyone will sleep through the night and I won’t feel absolutely shagged out of my tiny mind and look so haggard. Neil looks great, much better than he did, and he is back to his usual organising self, which is brilliant (and extremely annoying). I absolutely adore him and will let him organise me into the middle of next week. He is the bravest man.


Neil: Calista’s first tooth

Sunday, December 6th, 2009

Calista’s first tooth came through today. She has been rather cross and waking Ruth up through the night for a couple of weeks. Calista is very nearly six months old now, and is getting better at sitting up and supporting her head. She constantly rolls around on the floor, chewing anything that comes within reach.

Jasmine had a vomit this morning on her first feed of the day. Everything is trial and error at the moment, as she did without the NG-tube for so long, and now has a working kidney. She has seven medicines in the morning, which is a lot all at once, so we are going to try to spread them out a little.

On Friday Jasmine had bloods again and her tacrolimus level was back in its range 10-15, so we got the weekend off. The creatinine is still slightly high, but stable. Hopefully Jasmine’s bloods will be stable next week.

Jasmine is currently having all her feeds from the feed pump. She has to be involved at all stages. She likes to press the buttons as you set the pump up, and holds her NG-tube out when it is time to connect her. She then pulls on the line and pulls the feed pump over. If you move the pump she shuffles after it, so you have to sit next to her for the whole feed.

Neil: Back home again

Thursday, December 3rd, 2009

Jasmine was discharged today. We had a very efficient nurse who had her new medicines organised and ready to go. Jasmine was discharged and home for lunch. It is brilliant to have her back. It is a bit of a shock though, as we try to get back into a routine of giving  medicines, running the feed pump, changing dressings, etc. All of which we had handed over to the ward nurses for ten days. Her wound is healing up cleanly this time and is looking really neat.

Jasmine’s bloods are still unbalanced. Her tacrolimus level is high. Diarrhea and illness can cause the absorption rate to increase, and tacrolimus is actually toxic to the kidney. This could be one reason why her creatine is still a bit high at 53. However, surgery and viruses could also be causing the elevated level. She will probably need frequent blood tests until the levels settle down.

Yesterday Ruth took Jasmine for a mammoth ultrasound session. Jasmine was reading books and watching TV for an hour as the sonographer double checked every scan and compared them all to previous scans. Ruth’s nerves were shot by the time he finally said that everything looked normal and there is no dilatation. Good news!

I went for a Myofascial release session and got my scar tissue massaged. My shoulder has been giving me a lot of pain from my bad posture after surgery, but Ron has really been sorting it out. Another couple of sessions and some exercises and I should be back to normal.

This evening Jasmine was worn out and she fell asleep while giving me hugs, which was lovely.