London 'Waiting'

Off to London tomorrow. Molly's blood test results were a bit screwy, and we are dealing with probably rejection. Hey, don't panic, apparently its pretty usual around this time after transplant.

There was another little one in the same time as Moll and she was in last week with the same thing and went home yesterday, so that was reassuring.

So, we leave at 6.30 in the morning (gadzooks - when the hell AM I going to get any sleep?), bloods at 9 sharp, ultrasound at 9.30. Nothing to eat past 7.30 and no fluids a couple of hours after that. Then, hopefully if a doctor can be found, a biopsy around noon which will mean results tomorrow tea time. If too late then we will have to wait until tea time thursday. In Camberwell, with f*ck all to do. Waiting waiting bloody waiting.

Then if its rejection, 3 days of steroids and home when her numbers settle down. If not, GOD knows, I will let you know!

So, thats it. Not a lot of light relief yet. Apart from a brilliant email from my long lost neice that started Auntie Lu...... Thanks Neice you make me grin!!

Oh, one more thing - Daisy went off on a little summer jaunt with her best mate to Bexhill on Sea! She went yesterday, it was on the spur of the moment and she comes back tomorrow - it all conjurs up a wonderful Enid Blyton kind of summer - Daisy and her mate, the slightly older sister and the little younger brother - all having a Famous Five type of time in pools, lakes, beaches, little trains.... I am so pleased and proud!!! I had to rush around and pack all sorts of bits and bobs for her - its was, in Enid Blyton-esque "all terribly exciting".

Non Starter for Ten

Do you know, I feel that crap today that the only thing I could rouse myself to do this afternoon is update the blog.

But I just can't be arsed.

After 3 years and 3 nights of sleep (that is NOT an exaggeration) all I want to do is sleep. And escape the kids, the housework, and the humdrum. And my waistline (or lack of it).

No More Sicky-Poo

Now I was just re-reading the previous post about Moll's transplant and how poorly she was that week. I thought I had better let you know what happened there!

The hospital gave Molly Immodium to counteract the diarrhoea. Once I stopped it (it wasn't working, lets face it), the poos started becoming normal (I know -eeeewww - but when you have a kid with liver disease you become poo obsessed). And, more bizarrely, the tantrums stopped. Just like that. She has had a couple this week, but totally different really, "do-able".

And she is eating loads. She needs to drink more, which we seemed to get on top of today anyway. So there you go. Mini Update.

Where in La-La Land Exactly AM I?

Its a strange time. Molly is exceptionally well - amazingly well - fantastically fantastic and I adore her. She is playing, running, laughing, being cheeky, doing horrendous nappies and laughing. She is sleeping (well, if you can call it that) in the bottom bunk with Daisy.... and yet we are only a few weeks after she has had a liver transplant. Its a miracle.

And yet..... its still a see-saw. Her blood tests have been perfect... until this week. So we are looking at a probably biopsy later next week/early the following week. Exactly - we are WAITING again. Its a normal part of liver transplant and we were told to expect one or two of these times at least ...... and yet....... BLERGH.

Do I have to explain any more? Probably not. I am thankful, grateful, ecstatic that she is so well and so happy. And yet I am low, tired, washed out and world weary.

We were thinking of booking a holiday for the end of October. Everytime things start looking positive, something else looms.

There is some more amazing news that puts a MASSIVE smile on my face! My niece, who we haven't been able to have contact with, has been in contact with her mum, my sister in law and best mate. Along with the rest of the family I have been waiting for this day and I can't stop grinning! I have the pictures she sent all over the place and she looks SO much like her mum it took me back to our teen years and made me laugh and smile! I can't WAIT to meet her and hope that she feels OK and not scared - her mum is amazing and fun and loving and she will adore her I am sure! That, of course, is a load of WAITING OVER!!! 14 years of waiting! FANTASTIC!!!! She was this little chubby blonde 3 year old leaping over my sofa shouting Stuck! Stuck! when she got her sock stuck on the edge and was dangling upside down. Now she is 17, absolutely georgeous and learning to drive.

And heres another equally brilliant thing - I haven't seen her for 5 YEARS! But my best mate, her mum, my sister in law is COMING OVER FOR 3 MONTHS!!! God are we going t have a ball. We can reminice again about me being 5, with a plum in my mouth meeting her brother (my hubby now!) for the first time and uttering the immortal words "My names Luthinda and I want a Pony".

So there I am smiling again, after all these strange days this week. There are downs and ups, ups and downs and life goes round and round and round - but my God I can ALWAYS find something to laugh about!!!! The day I can't I must have been taken over my aliens, cos its just not me and I don't stay down for long.

Even thinking that I have to go to Camberwell for another week with Moll I have been plotting - she only needs to be in for bloods and 1 dose of IV a day - which means we can go down to the crummy charity shop in Camberwell which is like an amazing Aladdins cave - we kitted ourselves out for 6 weeks there and now I can go "gold panning" there again!

Ah well. Time to put the kids in the bath. Mmm. Could be interesting............................! Wet floor and wet Lu here we come (now I could be rude here but there is absolutely no hint of that on the bloody horizon for f*ck it).

p.s. I got home and rebelled. My hair is now, officially, Pillarbox Red and I love it.

Tom and Barbara

Now I just have to add another post that is only semi related to transplants, if only for the time I wasn't here!

If you have read my blogg you will know that I have been attempting to fill my patio with foodstuffs that I have grown and the occasional pretty thing like flowers and bits of corn.

Of course, everything bloomed while I was in London for 6 weeks! Bah!!!! Mum in law kindly sent me some piccies which was brill!

However, I have successfully grown two cucumbers in my "multi" pot. God knows how many tomatoes in the top of the multi pot - all green at the mo. Will they ripen? Who knows! Strawberry plants in the sides were a bit smothered. So I tied up the toms with my reel of twine that I got for my birthday and trimmed all the old crap off with my new secateurs. Marvellous!

We dug up my tub of potatoes and they are brill! Lovely new spuds and we ate some last night and they were SCRUMMY! (look, Molly may have been sick afterwards but that was just co-incidence OK!?!?!).

My stocks got drowned cos they had no drainage hole. My spuds were the same but apparently that was good for them as the soil was fine. Sunflowers are sky high and just about to bloom. My herbs have gone mad, as have my verbena and lobelia and my sweet peas out the front have two blooms. Mmmmm. They smell yummy.

Just thought I would tell you. Not that I am boasting. Just I GREW STUFF AND WE CAN EAT IT! How Cool is that?

All Change! New Baby.....

This is NOT going to be the upbeat post I thought it was! However maybe recounting the miracle might put things into perspective?!

Molly finally got her transplant! I can't believe it, as these last couple of days we are having a bit of a nightmare again, but I digress and will start from the beginning.

I got the call Monday 27th June when I was at Tescos, halfway round with a full trolley! We dashed back home and waited for an hour for the ambulance. So I called the co-ordinators, who were somewhat horrified that we were still in Sussex! I asked if the team had gone out yet and was the liver viable. The answer came: Yes! Its here and Amy is already out of theatre...

(Now I must explain about Amy of course! Amy and Molly are the same blood group and although a fair few years apart in age, birthdays are only a day apart! We always wanted Amy to have a big lobe and Molly to have a small one. So the fact that Amy was already out of theatre..... )

Well the ambulance came after some heavy verbal artillery from Kings and we were blue lighted up to London (it was an ambulance car - cool!). That is most definitely the only way to travel through London thats for sure! Throughly enjoyed the ride. Molly slept through all the sirens etc until we got to the hospital. Then a fire engine went passed and she woke up!

We were in theatre within the hour - amazing! Great actually - we didn't have that awful wait to see if the liver was viable and no hanging around on the ward waiting to go down - it was all whoosh bang go go go!! Once we got over the initial minute of emotion at letting her go into theatre, there was a big AH! from both of us. The relief of a liver finally being suitable and no more watching our child get sicker day by day right in front of our eyes - I can't tell you how relieved we were unless you have a sick child yourself. Its amazing.

And then 6 hours later (yes only 6!) we had her back again. They had a bit of trouble getting the old liver out - lots of adhesions etc. But once it was out it was all plain sailing. As of to date, the graft (liver) itself has been consistently good. One less thing to worry about! It was a good match for her.

24 hours later, Molly was back on the general ward. She took her vent out herself so they had to hurry things along somewhat! We did have a few issues with pain relief, but it got sorted in the end.

2 weeks later and they were talking about discharging us! Now that WAS scary - bit too soon. What they did do was discharge us to a flat for a few days. (Explain: The Rhys Daniels trust was set up by the parents of two children with health problems. The trust buys flats nearby to the hospitals so enable families to stay together. It was brilliant and a complete lifeline.)

Then the trouble started! Nothing too major, we have been lucky. But Molly did get a load of fluid - a bile leak for those in the know. This is due to Moll having a "cut down" liver. It has a raw edge that has to heal and it just took its time! Poor baby had 500ml (about a pint) in there at one point, all infected. So 3 drains later..... and a little infection, and a tummy bug...

We came home on Friday after spending a few days at the flats. She is AMAZING. Skinny little thing at the moment as she is still having bad diarrheoa and is occasionally sick. But she is running, climbing, laughing - its wonderful to see.

We are going up tomorrow for a check up and an ultrasound to check for fluid. The main trouble we are having is that she is not eating or drinking hardly anything (although that has been slightly better today) and has lost loads of weight. She is also having TREMENDOUS tantrums. Now that could be seen as a good thing. Indeed when it started we were pleased she had the confidence and energy to throw her weight around a little. Unfortunately these have built to around 6 today, lasting anywhere between 10 mins and 1 hour. They come on fast and she really gets incredibly upset - almost to the point of making her sick. We are wondering if its the steroids.

So tomorrow hopefully answers some questions - or poses more. And yes, this has put things in perspective a little. She is so much better health wise - its just that we are exhausted from worry and lack of sleep. (No, she isn't sleeping yet!).

We are so very glad our little girl is on the mend but god, I hope she starts eating and drinking soon. She WAS eating and drinking LOADS after the op - I couldn't stop her! Its just tailed off slowly but surely over the last 2 weeks. She was looking chubby and full of fun - now she is tired and angry. Not what we want for her. But she no longer has Biliary Atresia!!! And no longer has a huge tummy. We don't have to worry about bleeds or dehydration (well, not as much). She is fantastic and I am in total awe of the surgeons. Thank you all.

p.s. did I mention the bombs???? I am sure you are all aware London was bombed - Kings College was somewhat in the middle of the trouble area - suspects everywhere and the man that was shot (was it 5 or 8 times in the end?), well that was a mile down the road. Lots of sirens/raids/explosions that just weren't on the news. Scary stuff.