Happy 2010!

Hello everyone
here we are in our little Italian flat with Nanny and Grandad looking forward to the start of 2010. Emma is continuing to do well. We go along to the Ward or clinic each morning for her blood tests and then get a phone call later to hear how her drugs need to change. The big news today is she is having her stent (the plastic tube between her kidney and bladder) removed on Tuesday. They will also be taking her PD catheter out at the same time. This is a plastic tube which goes through her belly and into her peritonium. It was used every day when she was on dialysis. The surgeon always leaves it in in case the kidney doesnt work straight away and dialysis is needed. Thankfully Emma's worked immediately. Phew!! Once all these have been removed Emma will be able to bath and swim again ("hurray" says Su!) and I won't have the plaster change and wound site clean to do every other day. Not my fave job in the world I tell you!! They would have liked to have kept it in for 6 weeks but the blood in the wee has meant they want it out sooner. Ho hum.
We saw the dietician today. We all went together as I needed all 3 children and Al to hear about our new 'healthy eating' diet! It is incredible how before transplant she was on this low salt, low phosphate, low pottassium, low protein diet and now she can eat what she likes- and like everyone else not eating too much salt, processed or fatty foods.
Hope you all have a great evening and all our best wishes for a happy new year. Thank you to each and everyone of you for your love and support during what has been quite an eventful 2009!
Katy, Al, Emma, Greg and Meggie Moo

Camera girl meggie

Can i just say once again a big 'thank you' to all our Oakley Lower friends who bought me and Emma this laptop- Photo taken by meggie. It has been so fantastic and indeed there wouldn't have been a blog without it! You are so kind.

Today was our first 'clinic' day as opposed to going to the ward for daily checks. It felt a bit of a milestone. Emma walked around very well and they were impressed with how well she looked. Couple of medicine changes then back to our italian wing and a visit from Nanny and Grandad.

A lesson learnt....

Ok, from now on I will not tell you all we are having a calm, normal day until midnight strikes! At 8:30 last night we discovered blood in Emma's wee. We had been warned this could happen but nevertheless we were really frightened. I rang the ward and they wanted her in. So over we tootled in Grandmas wheelchair (I almost feel she is with us when we use it) and were sent to x-ray. The thought was the stent- which is a tube going to her bladder had changed place and made her bleed. Unfortunately there wasnt a before and after x-ray to compare its position to though. We then had to wait for the magic cream to work before bloods could be taken. Anyway we finally heard the kidney function results were ok at 12:30am. We were allowed back to the Italian Wing but had to be back at 9:30 in the morning. They were considering taking the stent out during the Tuesday surgery time which would only be 2 weeks rather than the 6 weeks they normally keep it in. anyway.... Todays results show the kidney is still working well- thank goodness and they are going to observe the bleeding. Its been a horrible day waiting for the results. I think Greg for the first time really sensed our worry and announced he was going back to Ruffs Furze tomorrow! Meggie then burst into tears as she wanted to stay. Anyway he has now changed his mind and is staying!

Hope you like the photo- Greg, Meggie and our new flat mate Benjamin bear playing on the Wii! Jackie and Jon Ross (Jon being the fantastic marathon runner who raised lots of money with us for Victoria Ward last April) popped in to see us this morning and gave him to the children. Thank you!

Until tomorrow.....

Meggie and Max

Meggie was very happy to have Max come and visit for the day! She loves babies and he is very happy to sit on her lap coo-ing and watching Greg play Mario and Sonic at the winter olympics on the wii with Baz!

A really nice, calm kind of day. bloods at 9:30 and haven't heard anything all day so assume all medicines to stay the same. Strange not to hear from them, am tempted to ring but I know they would have rung if they needed to. They don't miss a thing!

Love Katy

Message from Emma

I had half a sprout . The pigs in blankets and turkey were super.
I feal fab and i'm walking around the flat.

From Emma

Boxing day walkies

Once we had received our blood test results which today only needed 2 medicine changes we decided to have an explore. Emma was a bit anxious about the beggars, Greg wanted to get back to the wii and Meggie forgot her fuffer so as you can imagine it was a jolly walk!! I was just so happy to be doing something 'normal'!
The photo today is us outside our Italian Wing. We are on the 2nd floor and our windows are the first 3 on the left. It really is lovely- we can't complain at all. its a 2 bed flat with a bathroom and lounge/kitchen. The children have really enjoyed playing with their Christmas toys rather than all of their old ones as that is all they have here.
Baz, Shelley and Max are hopefully coming tomorrow! That will be fab. I will have to remind my brother that laughing still hurts a lot as he always makes me chuckle!
byeeeeeeeee

It's Christmas!!!!

Happy Christmas Everyone!

Very happy to report that Santa found us in our Italian Wing! The kids were up at 6 and presents were unwrapped by about quarter past.

We had breakfast and then went over to Victoria Ward for Emma's daily bloods. More presents had been left from Santa for all 3 children in the Ward. Greg was particularly happy to unwrap a star wars millenium falcon!

At 12 we wandered back over to GOSH for our Christmas dinner courtesy of the canteen. And it was really quite nice! I eagerly asked for carrots, parsnips and sprouts and was firmly told I could only have 2! Luckily my non-vegetable eating family let me have theres!! Then after a yule log pudding we were all ready to go back to our flat when we got a phone call from the ward asking us to go back. Our hearts sank as it really had been feeling quite a normal day up till then. Anyway Al took Meg and Greg back and I went up to the ward with Emma. They had found she had a high level of potassium which would need immediate treatment. But they wanted to check her bloods again as it had only been a finger prick test that morning. So magic cream on, hour wait, attached to heart monitor and then proper blood test. And the result was..... potassium fine. Oh my goodness!! Bit of a shame this happened but just shows how amazingly vigilant they are. Back again in the morning at 8:30.

The rest of the day was apparently spent playing with toys- I was fast asleep on the sofa!! Now all enjoying playing games and watching some Christmas Tele!

Hope you all had a lovely day,

Much love from us all.

Christmas Eve

All dressed in our PJ's and ready for bed! Hope Santa comes tonight. Thanks everyone for all your Christmas wishes. We are going to try and make it as fun and normal a Christmas day as possible. My 2 wishes were that for Christmas my kidney would be inside Emma and working and that the 5 of us could all be together. I feel very lucky that both wishes came true.. hip hip hooray! Thanks to everyone who has helped us get this far, have a fab Christmas.
Love Katy, Al, Emma, Greg and Meggie-Moo

PS Greg says Happy Christmas from the fish as well!

drugs!!!

Our new medicine cabinet! Emma'a drugs have completely changed. And as you can see pretty much fill a cabinet.

We went along at 10 this morning for her first clinic appointment. She has them every day now for a while.... even tomorrow.

The results were ok and even the one that had been a worry had come down slightly. Phew!

Nanny and Grandad left us this afternoon back to Bedford and a bit of time with their other Grandchildren. Happy first Christmas Max and Georgia! And have fun David you gorgeous boy you!!

We are off now over to GOSH for the Christmas Eve Buffet/boofay. Anything for me to avoid cooking and washing up!! We are also having our Christmas lunch there. Yummy! I can hear you laughing from here Tamsin!!

Till later......

All together again!

Meggie and Greggie arrived this morning and then Emma was allowed out for the night at 7 this evening- fantastic!!
Bit of a concern about one of her blood levels but on the whole very happy with her progress. I just have to let the doctors worry about it and work out what's to be done- easier said than done though.
Anyway just a quick blog tonight but know everyone will be pleased to see we are all together again. Hurray!!

1 week on

A quick message first for my Next Sale buddies... you know who you are... can you believe it? I did not even get a VIP invitation! I am sooooooooo cross!!!!! Good job I am not up to ordering anything this year! So you will all have Melvin to yourselves.... until the summer sale of course....!

Doesn't Emma look amazing?! Standing up by the Christmas Tree in the ward! Today her drain came out which she really was dreading. She was so brave and admitted it wasn't as bad as she thought it would be. She also had an ultrasound to check a couple of things. Bit scary for me and Al but very happily all still looking good. It was incredibly strange looking at my kidney pumping away inside her. The GOSH team are simply brilliant.

My bandages came off. Poor Grandpa had to inspect my wounds as I couldn't look! He promises me they look fine. I am back at Guys in 3 weeks for a check-up.

So tomorrow my Gorgeous Greg and Magnificent Meg come to stay for a few days. We have moved in to the 'Italian Wing'. No marble to be seen but there is a pizzeria along the road which may be quite nice!! They are all packed and Nanny and Grandad will bring them by train along with my long list of things we have forgotten. That could be one fun journey!!

Until tomorrow.... Katy

PS Thanks for all the comments, I so love reading them.

back to the ward

A rollercoaster day.... one of many we have already had and one of many we are bound to have in the future. Started with poor Al being told Emma was being evicted from her room and being out in the ward of 4 beds. The reason being children were being admitted with infections and they needed to be isolated. Absolutely fair enough but Al will now have to sleep in a chair rather than the pull down bed which he has been on. He hasn't had much sleep this last week but will get even less tonight. He has been told if the bed next to Emma isn't filled tonight he can kip in it. That would be funny to see the 2 of them in the children sized beds side by side!
Emma is now on steroids, something which will in time be decreased. In the meantime though she has great side effects- wants to eat! but also bad ones- very bad moods. This can be very hard for us to listen to but the nurses assure us they see it in most of the new transplant patients and it won't last. We did laugh though when the carol singers turned up and Emma very rudely told them to "Be quiet!" from behind her curtain!
Her bloods are being monitored very closely so that the team of doctors can balance her drugs perfectly. Its very stressful when you are told about levels being 'up' and levels being 'down'. You just have to have complete faith in the team as they deal with this every day. She is still on a drip at night as her body gets used to my kidney inside her. They are happy with her but are certainly having to 'tweek' things just as they had warned us they would.
Emma did walk today for the first time since the operation but she didn't want a photo taken. Maybe tomorrow. We don't push her, she knows what she wants!
Meggie and Greg are having another day at home and will be coming on Wednesday now. I don't sleep well at night at all so really struggle in the mornings. we are also moving accomodation tomorrow as the patient hotel shuts for Christmas. GRRRRRRRRRR So we are heading to the 'Italian Wing'. How posh does that sound?!?!? Am sure it will be anything but, but who cares!!
Coz and Jim visited today which was fab. I think Coz and Mel have obviously been to the same wheelchair driving school!! I did laugh though which did hurt my side but was nice to do for a change!
Am now planning to take my bandages off. Oh my goodness!! Don't worry Grandpa still here to pick me up if I faint! I really don't do scabs, blood, oozy bits. Changing subject now!!
2 more things.... (sorry I am so boring)... in case you missed it do check out the c-beebies pantomime on i-player. My beautiful Meg and Greg are seen twice, Grandpa once and the backs of our heads throughout! And we are also in this months 'She' magazine, the reporter was following one of the nurses when we were on the ward in October. Fab photo of Emma in it and a bit about me.
Right, enough waffling and bandage removing avoiding.... hopefully back tomorrow.

Return of the Dongle!

That was worrying... no internet for nearly a whole day!
Have just been skyping Meggie and Greg. Its lovely to see them on the computer. I can't believe its been a week since we last saw them. The plan was for them to come up on Saturday but that was before I realised just how much the operation was going to take it out of me. I have been completely useless and had to call in the troops to help again. I was told it would be like a bad case of flu with operation pain on top. mmmmmmm...... But hey, have no regrets at all- you should see my beautiful Emma sitting in bed, ordering her Daddy about and eating chocolate, yoghurt and cheese by the tonne!
I do feel better today, have cut out the really powerful pain killers as they were making me drowsy and sick. I can walk a lot better and am eating more. But worryingly still can not face chocolate.... What has happened? Since when have I liked savoury food over sweet? It won't last I am sure!!!
As I said Emma is eating for England! She is on steroids which make her very hungry and also she has to eat lots of dairy food as her phosphates are low. The total opposite of before transplant when she could only have 3 portions a day. Her blood pressure is still needing medication which is a shame but not unexpected. They have to pump her with fluids to protect her new kidney but that then increases her BP. At least they can give her medication to settle it and it should only be for a short time.
She still has her drain in but it may come out tomorrow. They also want her to start walking tomorrow. That will be wonderful to see. Will have to get a photo for the blog of her 'first steps'! She really is so fab!
So Greg and Meg now should be coming on Tuesday. They have had a great week with Nanny and Grandad. They were so chirpy on skype showing me all the things they had been given for being 'such good children' (Nanny's words!) They are so amazing.
Am off now, Grandpa is babysitting me tonight! Erika has returned to oakley after her second nursing stint- thanks for everything Erika, but especially the kiwis!!!!

Dodgy Dongle, Sorry.

With apologies, the Beedens have a disfunctioning Dongle and are currently unable to leave any updates. They hope to remedy this soon. Katy would like you to know that she and Emma are both doing well.
From, the temporary dongle stand in.

Hurray!!!!

Together Again!!

It's Alistair here. I am pleased to say that Katy and Emma were reunited again this afternoon at Great Ormond Street. I would have posted a photo of the occasion, but Emma was a bit publicity shy for once. It's been quite a day.... Emma had an Ultrasound scan this morning which clearly showed the new kidney doing it's job perfectly. She has also had to get out of bed a few times today to be weighed and make use of the commode - which they are very pleased about!! I went across to Guys to fetch Katy this afternoon. When we finally got back to GOSH there wasn't a single wheelchair to be found in the whole hospital so we had to walk very gingerly to Victoria ward. This slightly spoilt the great reunion because Katy is really in no fit state to be walking anywhere. However, we managed it and Katy and Emma were delighted to see each other again - so they could play "who's got the longest scar" (Katy) and "who's had the most lines inserted in them" (Emma 7!).

They have both had such a busy day that, as I type this, Emma is fast asleep on her bed, and Katy has gone across to the patient hotel to sleep as well.

I am sure they will both be feeling stronger and fitter tomorrow as the next stage of their recovery begins. Thanks for all of your lovely comments.
Keep blogging.

Al - a tired but very happy husband / dad.

A better morning

Good morning everyone! Have just really enjoyed reading the comments from yesterday. I was going to write again last night but other than when mum and dad were with me I think I slept all day and then all evening. I had been warned that it would knock me completely for 6 but I really hadn't appreciated how much.
I do feel an awful lot better today. Am on 3 different painkillers and some anti-sickness drugs. I think the queesy feeling makes me the most miserable. Thank goodness for my magic eye mask thats all I say!
So today I should be leaving Guys and staying at the Patient Hotel at GOSH. I so can not wait to see Emma, Al and Kath. Will hopefully be there in time to watch the c-beebies panto. We went to see it earlier in the month and were sitting on the front row.
The nurses here at Guys have been great but nothing compares to the GOSH ones they are amazing. Emma couldn't be at a better place I know that.
Mum has been sending me phone pictures of Meg and Greg playing in the snow. They look like they are having a fantastic time. I miss them both so much and can't wait for them to visit soon. Greg will be pleased as I have to rest and therefore will be able to play on the wii with him!
Have a nice day everyone and will -fingers crossed- be sending you a picture of me and Emma together again later!
love
Katy

grumpy day

Bit of a reality check this morning. Feeling pretty yuck! Think I had it in my head that it would get easier each day but feel worse today than yesterday. Had lovely photo of Emma sent over which is great. She had a good night sleep which she really needed as has been very grumpy. Can't wait to see Emma and Al, havent seen them since Monday. Hopefully will be out tomorrow.
Love
Katy

Bye bye from the phantom

I have been evicted from my executive broom cupboard, i was evicted from the cafe in the depths of Guys, and no finally Katy has evicted me.
But she's looking fab and has come on so far already so i know she will be well . And with all your good wishes and love she can only continue to get better.
The chocolate cupboard has been replenished, and with Mum and Dad coming tommorrow fully laden its my time to leg it back to work.

But i will be checking in lots so no naughty comments, hen......

xxxxx
the last of the phantom's blogs

I'm back!

Have just really enjoyed reading all your comments. Thank you so much!! Am doing well, walking to the loo with help, drinking and most importantly eating chocolate again!! Its great being able to talk to Al on the mobile and to hear how well Emma is doing. She has been very down in the dumps today but I am not surprised. The morphine had that effect on her last time whereas it just makes me sick. Al's sister Kath has been with him and has been given accomodation by the sick children's trust. Am so pleased we have been able to do so much fundraising for them.
I hope you have enjoyed reading Erika's posts. She has been amazing these last few days. Back to work for her tomorrow and Mum and dad will visit. They have been holding it all together at home so that Meg and greg can have a good last week at school.
Am waiting for my tea to arrive, Erika chose it for me as I was fast asleep in my fetching eye mask! It is brilliant. But I agree it does need a bit of a customise with a few sequins and beads!
Back tommorow, or maybe even later!
Katy

Where did that bus come from?

Now there's a pretty picture....!!!

The day after and she is feeling like she has been hit by a bus, not in pain as such but really really tired...

She's doing fab though, only 2 lines in now but worryingly she does seem rather attached to her eye mask.

Although tired i am to say that the texting thumb is fully operational..... you have been told

Al and Emma are doing well over in Gosh and have spoken a couple of times on the phone, much sympathising over how tired they both are.

Erika, the phantom blogger

(just because am blogging dont think that Katy isn't reading your comments , they are read then re- read and savoured... )

Hello everyone

T day

'Woke up about 6 after not having had the best of nights sleep.
Very proud to have had the cannula inserted without the need for any magic spray.
wheeled down to theatre with most attractive surgical stockings on for about 8:50am, looking calm and composed with the most lovely anaesthetist lady in charge......

back onto ward again at 3:40, woozy and snoozy but doing grand

Meanwhile Emma went down about 1 ish and kept us in suspense until 6 when the surgeon came up to see Al to say she was out of theatre, asleep but all had gone well. She came back onto the ward, warm and sleepy and weeing well. Delighted with how well things have gone today.
Obviously its still early days but its gone well today.... '


xx

Erika the phantom blogger
and can i add how incredibly proud i am of both these fab girls, they done good! xx

All systems go

First they gave us princesses on ice

next came dancing on ice

quite often came vodka with ice

but today.....

we give you.....

kidney on ice!!!

Fabulous start to the day!!

Fantastic news in the early hours of this morning... Albert James arrived safe and sound

This really started today off brilliantly for Katy, Al and Emma

Congratulations to Chris and Anna, and apologies to the bewildered nurse that Katy told at half 2 this morning....

xx

Erika , the substitute blogger

Its showtime!!

Hello all!
Just a quickie to say Emma in GOSH, I am in Guys and we are all set for tomorrow! Erika will hopefully be doing the update tomorrow- I do hope she doesnt add any photos of me post transplant!! Thanks for all your comments, texts and many, many prayers. Will be back blogging on Wednesday!
Much love
Katy

Dialysis

Fingers crossed this is a photo of Emma's last night of dialysis at home!

Off to hospital in the morning.....

Emma Beeden- VIP!

Emma was asked yesterday to switch on one of our neighbours Christmas lights display. She said she was very nervous! Tamsin asked her to choose where the money raised would be given to and she chose the Dialysis Unit at GOSH. One of the nurses said they would use it to buy distraction toys for the children on dialysis.
It was lovely to see so many people come along and watch the event. Emma really did feel like a VIP!

My gorgeous family

Katy's day out!

Today I had my last trip to Guys before Monday. Blood tests, urine tests, chest x-ray, ecg and a pre-admission talk with 2 renal nurses and another family. Went to see the ward I will be staying in. Very modern, very light and airy and very, very different to Victoria Ward at GOSH! Was very pleased to hear I can use my mobile as the information sheet said not! It is only for messaging though and has to be on silent!
Please do keep texting me, I am using the blog to tell everyone what is going on to save me repeating myself all the time. If I don't answer texts it will only be that I am sleeping or trying to rest before being discharged.
The operation itself should take about 3 hours and then the senior nurse drives my kidney on ice over to GOSH. Emma should be going down to theatre about midday.
I was home by 3 so was able to pick Meggie up from school. She had her nativity again today. She cried from start to finish when I watched yesterday but of course was a real 'angel' for Nanny and Grandad today!!

Emma

For those of you who maybe don't know how we got to the rather daunting point of kidney transplant I thought I would do a quick catch up of Emma's life so far.....!

Emma was born on the 10th March 2001 at 32 weeks weighing a hefty 3lbs 8.5oz. I had pre-eclampsia from very early on and it was decided that an early delivery was needed.

Life pootled on quite normally until she was diagnosed with a growth disorder at 3. We were told she had 'metaphyseal chondrodysplasia'- basically a type of dwarfism. Although this was hard to accept at first we were reassured when we were told 'she would just be short with no major health issues to deal with'. At this point I was pregnant with Meggie and we had 1 year old Greg. As soon as we knew about Emma we realised Greg had the same condition. As it is genetic we knew Meggie also had a 1 in 4 chance of having it. When she was born in February 2005 it was obvious she was the only one not to have 'special bones'!

By April 2008 life was great. The children were at school and preschool and I was really happy in our new home in Oakley. Emma though really wasnt herself. Countless trips to the doctors, phone calls to nhs direct even trips to A&E didn't get to the bottom of why she kept being sick. Long story short eventually a doctor at the CDC in Bedford decided to check her blood pressure.... and life hasn't been the same since. She was rushed to Great Ormond Street with 'life threatening hypertension and chronic renal failure'. After 3 weeks they had managed to get her blood pressure down to a safe level using all sorts of drugs.

Between then and October 2009 we were back and forth to clinics. Checking her blood levels. We also started the process of living kidney donation. Alistairs blood isn't a match but mine is so I started the tests. Nothing was straightforward and I had to have numerous extra tests. But the end result was fantastic as I was given the all clear to donate when needed.

The plan was always that Emma would have a 'pre-emptive transplant'. This would mean she would avoid dialysis. Unfortunately in October her blood test results went unexpectantly high and she was rushed into GOSH again. A peritoneal dialysis catheter was inserted into her stomach and we began the next stage in our lives.... This type of dialysis can be done at home so we were given lots of training and again after 3 weeks came home- along with our machine and a garage full of fluids, drain bags plasters, wipes, swabs etc, etc.

Alongside getting used to dialysis our date for transplant came up- 15th December 2009. So 2 rather major things to get our heads round. Luckily with amazing support from family, friends and of course all the staff from GOSH we are heading towards this date with positive thoughts. Yes it is scary but Emma's quality of life will be so much better for it.

Emma goes into GOSH on Monday 14th and I will be at Guys hospital. The operation is on Tuesday and I will hopefully be with Emma by the Friday. Emma needs to stay on the ward for 7-10 days then we will be in the patient hotel over the road for as long as it takes to stabilise things.

I hope to be able to keep everyone informed by this as I then know everyone is aware of what is going on. I will try and text as well but I sometimes can't text straight way and then I know some people worry!

The picture by the way is when the children presented the money raised at Oakley Lower School to Victoria Ward. They were so pleased to get the money and so grateful to all the staff, children and parents.

A first hello!

Hello everyone,
thought this would be a good idea to keep everyone informed as to what is happening with Emma and me over the next few weeks. Have stolen the idea from another mum whose blog has been great for me to read.
Am still playing really at the moment but hopefully will get into the swing of it with pictures and some 'guest bloggers'!!
So watch this space!
Love
Katy