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For those of you that take an interest in Reece I have once again decided to start a thread in his name, I deleted the last one for reasons I wish not to mention, and after seeing at the APAT how many of you still take an a very big interest in his progress I think it only fair to do so.


Today Stacey, Reece and myself venture off to Birmingham Childrens Hospital for further investigations. In January of this year, with Reece's livers failing as bad as they were he was put on the small bowel and liver transplant list and given 6 to 12 months with us if no transplant came forward, however around May / June time he was doing so well they decided due to the poor success rate of this transplant, mainly the bowel side, there may be alternative op's that will help him along. Now some of these, we are led to belive,  are very new and one has only been done in the USA, but we will be getting more info re: them on this visit. Basically what will happen is that tomorrow Reece with go to theater and investigations will take place to see if he should return to the transplant list or what ever will be in his best interest.


I have to admit that we have been living in normal land for a few months and apart from the sheer stress of it all we have managed to have to take Reece on day trips out and forget as much as we possibly can what lays ahead, the APAT fro me was a big release too,  but today I can honestly say my stomach is in my mouth.
Not too sure if the have wifi at the hossy but will keep you all infromed as and when we can.

Maureen.x

Thank you Maureen, and all the very best to you all.

Thinking about you, and little Reece of course.

Best wishes, hope today goes well for you.

Good luck Maureen!

all the very best Maureen.  Lots of love you to all xxx

Thanks all, Darren will not be coming so he will still be on line in my name, just so you arn't confused.

Hope it all goes well Maureen.

Best wishes from Me and Debs.

good luck  i hope all goes well

We're all funking for you Maureen and hoping for the best.

Good luck for today. My heart goes out to you the family and of course Reece

 ;goodluck;

Will be thinking about you all - lovely to meet you by the way.

Best Wishes to Reece, & all of your family  ;goodluck;

God bless girl....keep your chin up for him.

Thinking of you all and wish you the best of luck.

All the best Maureen.

xx

Good luck to you all

xx

He'll get through Maureen, you know that.

What a brave boy he is, too.

Oir thoughts are, as always, with you.

Thinking about you
xxx

Thinking of you all   :)

 ;goodluck;

Best wishes Maureen and Reece.

Glenn

Good Luck Maureen - hope it all goes well. xxxx

All the best Maureen x

Best wishes to all of you.

Best wishes Maureen.

Great to see you and Darren again on Sunday.  Hope all goes well this week.

things like this, allways seems to put small matters into perspective.,,.,,,.

good luck little reece.,.,keep smilling,,,.,.

How Did it go, any news yet .I'm glad you had a break from it at the APAT.Stay strong Maureen.My toughts are with you all,Brendan.

Having missed the original thread and only have the info in this one I can only offer my best wishes for you and Reece. Being a new father myself I can't even begin to imagine the amount you must have going on right now.

Good Luck Maureen, hope things go well, My thoughts are with you.

We just got back from Birmingham, with the best news we could possibly have wished for at this stage. Reece's liver, although still enlarged are doing ok, His portal hypertension presure registers 6, which is good enough to be considered for NON, yes NON tranplant surgery. Now for us this is fantastic news , although he still only has 17cm of small bowel no miracle cure is available but it does mean that he has another chance at life. He will be having one other test very soon to determin which proceedure will be best for him, and then we have to decide where to have it done, Birmingham did have the best surgeon  Mr Miiler but he has now left so we will have to wait and see which route they are going to go down before, which ever they decide it will be a very intense time but at least the black cloud has been lifted and like Mrs Red said to me it is now just grey. At first it felt like a magic wand had been waved, but then after a few hours it sinks in again and we realise he is still one very poorly boy, but my god he is a fighter.

We learnt that a couple of the other transplant patients ( children) have lost thier battles which was heart breaking, to go into the chapel opposit Ward 8 is also heart wrenching seeing the pray tree and notes left from parents and family, you can actually feel thier pleas in the words they have left. It brings it home how so very lucky we are to still have Reece, it is a different world on that ward I pray that none of you guys have to go through it I really do.

Thanks to Mrs Red for being at the end of the phone.

I will be keeping this thread going for those that take an interest, thanks all, like Tikay says ..it's been emotional..xx

Good news Mo.

I'll keep my fingers crossed.

Great news
 

XX

Very encouraging, continued best wishes.

that's good to hear Maureen.  take care xx

Good news Maureen.

Hope things continue to improve

So glad you have some encouraging news, Maureen, we have been thinking of you very much, this week in particular with all these hospital visits and further tests.

It was lovely to see you both last w/e - I am so glad you managed that break - and it was so good being on the same table as your good self.

Take care, all of you,

Bainn and Harmony

xxx

Such good news Maureen !!! so pleased  it went so well for Reece .

Never far from my thoughts  :)

Charmaine

xxx

I have been torn on what to say, torn on wether to post, I know no words can make things right. I just wish you, Reece and the all the family the very best for the future, and I am so happy that Reece has had some good news.

Jimmy

 Reece is a wee fighter right enough. I'm happy about your news:) You're a fighter too :) x

Please do not feel torn on wether to post ..these posts give me more strength than you will ever know...hence the thread..xx

Great news.

if there is one thing that I hate in life is an child that is ill, and its good to hear good news..

My thoughts are with u

 ;)

I wish I had read this first before posting about coping with my kids..

Reece is a fighter Mo as he has already proven,he doesnt have a clue whats going on so positive thinking from you, Darren and Stacey will get him there in the end.

The will to live will conquer all...beleive it

It was only after i'd met yourself and darren last weekend that kev told me the story about reece.You are both brilliant people and it's great to hear a little good news for once.

Just spotted this thread and delighted to hear there's a new light at the end of the tunnel.  I think of Reece every time you post...no matter what section of the forum it's in.  From what I've read and the pictures you've posted he's a little sweetie and a fighter too.  Great combination if you have to go through something like this.  Reece will always been in my thoughts and prayers.  xox

That is great news, all the best.

Best wishes.

Fingers and legs crossed...good luck to you all.

Once again thanks all for the messages , like I said they mean a hell of a lot to us. The last few days have been absolutly great, really enjoying Reece and having fun. Today Darren and Reece went to the pictures to see Surf's up and Reece was carried back into the house by Darren as it must have worn him out saying Penguins FANTASTIC.. before crashing out on our bed. At just 2 yrs and 8 months he will go to the pictures and watch a film, my goodness my two would have had me pulling my hair out at that age.

Thank god for good news. x

wonderfull news maureen..
i hope you and darren get many more day trips with reece,he must think hes got the best grandparents ever..

FRANxxxxxxxx

Very encouraging news Maureen.

XX

Good stuff Mo.  There is a light at the end of the tunnel and hopefully it gives you all a bit more strength, not that the little fella needs any.

On a different subject, you over the Jacks yet ;)?

Kin..What jacks?


Been an eventfull night, Reece woke us up in the middle of the night to say he was tangled in his lines. On closer inspection we saw that not only was he tangled but it had come out of him completley, so after doing my headless chicken act waiting for the blood to come spurting out my auto pilot set in to apply pressure to the access point in his chest, but this was uneccesary as it did not bleed but leaked what was most likley his TPN solution. Anyway it was then off to Manchester with him . He is fine , running around the ward like Darren Cambell !!!

Stacey has now taken over at the hossy and we have returned home, It is unlikly he will be operated on today, most likley tomorrow so will possibly have a cannula fitted today to stop him dehyradting. nothing that he isn't used to although hates having it fittted. This will be approx his 10th Central line he will have had. He was put into a cot that one wouldn't put a wild dog into, filthy to say the least, I managed to see the ward sister about it when she came on duty who removed the said infested pit and thanked me for bringing it to light. I have taken one photo of it on my mobile but it was taken away to the other end of the ward before i managed to take another and was cleaned down by the sister and a helper for around 1/2 hour. THAT was how filthy it was. This is not the first time it has happened ( I usually clean it myself) but we will not accept it no more, I think after 2 1/2 years and endless happenings it is time to get serious, once maybe acceptable twice maybe but Reece deserves the best the way he fights, without any added possabilities of infections.

Anyway, like I said he is fine and you wouldn't know owt was wrong. Hopefully after the new line is fitted he will be allowed home that evening.

Regards Maureen.x

Maureen, you could not make this stuff up, what an incredible battler he is.

He'll be just fine. He just WILL.

In the last week alone three mistakes have been made, 2 to do with med's in B/ham, plus a nurse that was drawing blood cultures from his central line ( which one has to use aseptic technique to access) dropped the syringe on the bed and still put the same syringe with blood back into Reece's line. Now as we are well aware he has fought many line infections and things like this can not happen. So I guess today was the day i said no more.

Its a constant mental and physical battle to keep the fight alive Maureen and im sure everyone of us is 100% behind you and please dont forget that. We cant be there in person but we are all praying for your wee grandson.

I know you will get tired and feel like giving up but you CANT...if you and your family dont pick up on the mistakes of incompetent staff then what hope has he got!!!

Deep breathes girl...then give them sh*t!!!

I know they are only doing their job but as a parent/grandparent you know best what Reece needs and make sure he gets it.

To keep you updated as promised,

Reece has just come out of recovery, all has gone well but looks like he faces more tests as they seem to think he is down to 2 veins which they can use for future lines. Not what we wanted to hear but we will cross that bridge if and when we have to. If all is well he will be allowed home tomorrow.

Love to you all x x x

thinking of you Maureen xx

If u need to chat u know where i am xxx

Thinking of you all very much, Maureen - in thought and prayer.

Bainn and Harmony xxx

The little man spiked a temp again early doors 2.30 am, Stacey took hm back into Boothhall, He is ok now just waiting on blood cultures to come back to see if anything is growing in his new line. He has had another test today also of his bowel, which has shown the small bit he has is rather distended. We will not know anymore until the doc's have took a look at the results but will keep u all informed when we here anything.
His temp has remained normal all day so hopefully it is nothing to be concerned about.

thinking of you and yours x

Best wishes to the little man

Thinking of you all, Maureen.

Bainn & Harmony xxx

Hi Maureen,

I'm not a man that's moved to tears easily, coz i was brought up the hard way, but i have to admit that they're rolling down my cheeks as I post this.

It's the first time that I've read this thread, coz from the title I presumed ( wrongly ) that it would be about someone coming to a crossroads once again about whether to continue to play poker, or not.

This thread of yours reinforces, as do other things from time to time, that most of us forget just how lucky we are to lead our lives as we so wish and are able to indulge in day to day activities which we take for granted and mostly fail to appreciate. Some are not so fortunate.

Thanks for sharing your grandchild's battles with us. A reality check is necessary for all of us sometimes. I appreciate that you have to deal with a very large one during your every waking hour.

My thoughts are with you and your family and I will take time out for a little prayer for you and yours before I sleep tonight.

My very best wishes,

Ian.

Thankyou ,
You are right of course, EVERY waking hour is taken up with thoughts and if you do let your mind wander to other things in life, like enjoyment,  a quick guilt check  slaps you right in the face, like this week we have moved, I have return to work medicals to attend and lots of other things to do, also Stacey is in the process of moving back to Huddersfield so that I can support her more easily,  so not had the time which i normally spend with Reece, which the last few months he has been living with me. He is still in hossy as it goes,  as he spiked and this am, but i'm sure he will be fine.

x

Yesterday Stacey,  Darren and myself had meeting with Reece's medical team at Manchester to discuss ways forward for Reece. It has  been agreed that we shall allow Reece to have surgery to attempt to lengthen his bowel, with only approx 17 cm  this is really his only option apart for the dreaded Transplant.
Now the procedures on offer to him are a, STEP or b, Bianchi procedure, both of which we are led to believe are quite new op's. They think that the road to go down is option B. At this stage I have to read up a lot to know exactly what this entails and we shall be having a meeting with the surgeon that will perform it soon to gather more info. We are told that he is the surgeon in the UK with the most experience and he will be our best bet in this country ( the USA has a far more experience and expertise in this area of surgery obviously if we had a choice we would take him there but the nhs does not fund this). The idea is to lengthen the bowel in order to reduce Reece's intake of TPN, as this, whilst keeping him alive,  is what kills the livers. When they mentioned the aim is to get him free of TPN within 18 to 24 months after surgery it was like OMG here we are talking of Reece being free of machines and the hope of a better life for him , from thinking that back in January all we had was 6 to 12 months with him. We are not expecting miracles but it is like for now, although he will remain on 8 meds 4 times a day plus his antibiotics when he gets line infections, and his machines at night, we have a future with him. He has another line infection at the minute but they expect these to reduce post surgery when we have got rid of this expanded part of his bowel, as these infections alone can be very serious. The op is expected to take place late Oct / Nov, it will be hard on the little man but he is a fighter and I am confident he can get through this.

Oh yes, then we went to Leeds free as i can be of negative thoughts, went to the the fianl table with 17k in chips with blinds of 6 /12k ( around them blinds anyway)and came 2nd for £445, Daz also finaled for £111 he entered the final table with approx 110k. Good day I say, plus saw Wardonkey whom I managed to get a kiss and huf off, not a bad day all in all.

What a story this young man will be able to tell when he grows up.

Keep us posted, Maureen.

Just read the thread Maureen, haven't been here much so sorry I haven't replied sooner. Glad to hear Reece doesn't need a transplant...he is so brave...good luck with everything. Thinking of you x

I'm so pleased Maureen, it all sounds very positive.

Reece is the word!

xx

Best wishes to you all. met you at hthe western last year for the charity thing, its only now it has dawned on me that i have seen you at luton a couple of times and will say hello to you next time. ( think we sat and had dinner with wardonkey? at the western)

Hi Maureen
Have just come across this thread as I only lurk now and then. Me and my partner Jue met you and yours at the Circus, Stoke earlier this year and are sad to hear of the little chaps troubles. I have to say he's a tough kid and we wish you, your family and Reece all the best for the future,and fingers crossed for success with the treatment.

Kev + Jools

x x x x

Thanks all. Celtic x and to Kev n Jools , great to hear from you , and welcome to blonde , keep in touch,xx






 ,

gl to you all maureen

All sounds very positive maureen , thank you for keeping us all informed .

As always my thoughts are with you all

xxx

I echo everything that has already been said, all the best for Reece and his future.

Thought it was time for an update.

It has been very intense lately as there have been some very big decisions to make for Reece's future. I will not go into too much detail but we have an ongoing official complaint AGAIN regarding human errors that have taken place on his ward, to cut a long story short if Darren and I had not have been there we may not have still had him.

We have been faced with a major dilemma as the surgery that Reece requires is quite specialised and the guy with the most experience in this field only operates in Manchester, or so we have been informed. We were wanting to move Reece to Leeds due to quite a few errors at Manchester but with this in mind Stacey feels very reluctant to do so  as he would have to be operated on by a less experienced surgeon and it is the after care on the ward where we have concerns, not the surgeon.

This week, Tuesday,we met up with the surgeon that will perform the op, . It was a long meeting where he explained that in Reece's best interest he would rather leave his options open on the day of surgery. Basically with Reece only having 17cm of small bowel he needs it lengthening, IF when he opens him up his bowel is dilated enough he will proceed with a Bianchi procedure to increase it's Length, if not he will be performing another op to commence stretching his bowel, he will come home after a stint in hossy and we will basically control how long fluid is left in the bowel increasing it gradually in order to stretch it. It will be painful at first for Reece and a very long process but if successful he would ideally like to increase his bowel Length to 50 cm over a prolonged period and more surgery. The operation is scheduled for a full day , incase he can perform the lengthening on the day and not have to stretch it more, for the 27th Dec, to give us Christmas at home with the little man. This date is very special due to another reason, which is not my place to say, but if it all goes ahead on the day, due to this date, I feel he will have a guardian angel in there with him.

Regards, Maureen.xx

27 Dec is my son Tommy's birthday.

Good luck, we will be thinking of you all

Best wishes. Hope it all goes really well.

Vince

sending all my love and thoughts to you all Maureen

FRAN..xxxxxxxxxx

Thanks all, Yes, as Tom said the 27th is Little Tommy's birthday, our thoughts will be shared on the day.xxx

I can't imagine what it must be like to go through things like this, I'm not sure how I'd cope to be honest.   Best wishes Maureen and Family.   
Thoughts with you too Tom, I'm sure it's not an easy time.

Prayers and cyber hugs all around.

{{{{{HUGS}}}}}

Will be thinking of you all.  xx

Reece has an awful lot to go through , luckily he has a wonderful mother and grandparents .

Thinking of you all


xx

all the very best to Reece Maureen - will be thinking of you all on the 27th.

Hope all goes well, will be thinking of you and yours x

 ;) :)up

Prayers and thoughts are with you.   

xxxxxxxxxxxxx

All the best wishes maureen xx

All my prayers and best wishes to you and all the family Maureen xx

The most important person in these things is most often the patient.
Reece may be a little boy, but I am sure he is man enough for the job.

Have a great xmas.

I have just returned home having spent the last 7 days in hospital:

first thing I do is check up on the blonde forums and there is the latest update on little Reece, and I think to myself how lucky I really am.

As always my thoughts and wishes are with you and your family Maureen.

Hi Maureen and family, sorry, I have only just seen this and am very sorry to hear of the latest developments you are all going through, especially as regards the problems with the wards.  The new surgery is daunting but I am so glad you have found this surgeon and wish you all the very, very best for the 27th. 

You will all be in our thoughts for both Christmas time together and for the surgery and our prayers are very much with you all and that grand little boy, Reece.

Love and Peace,

Bainn and Harmony xxx

good luck and think positive,what a brave little boy.our thoughts are with you and yours mo x x x

Hope all goes well, lots of love to the little man and all of you x x x I'll be thinking of you x

Hey there Maureen, it's Caz, just read this whole thread and it's quite upsetting, but sounds like little Reece is a fighter, bless him.  Hope all goes well on the 27th, me and David will be thinking of you all xxxx

Ok so it is getting near the dreaded date so we have thought we needed to give Reece a few extra fun days out as not too sure how long he will be in hospital after the 27th, so here are a few recent piccies from this week. Not too good as the camera is not the most up to date and I amno Mrs David Bailey.

.

.

and not too good at posting pic's either ..sorry about duplicates

They're great Maureren.

Agreed.

Nice pics Mo.

No worries...he's so sweet you wouldn't mind seeing him twice.  Glad he's having some fun time.  Will be thinking of him and sending loads of prayers and hugs his way.

omg have just picked up this thread and after reading it all and then seeing the pics especiallty the praytime 1 has done me in have had to shut the office door til i compose my self, i lost my brother 1 year ago to the big C this coming wednesday and all NOW IM A BLUBBERING WRECK all my best for you and yrs am going for a drink now which has amazed all of my men as i dont drink but i will raise a glass for Reece xxxxxxxxxxxx

It wasn't till after we got home and was looking at the photo that I noticed his hands ...

lovely pics Maureen - thanks for sharing them.

lots of love xx

Thanks, Reece is 3 on Tuesday.

Thank you for sharing the pics, they made my day:

Advanced

(http://scrapbook.momsbreak.com/PageLayout/3rd%20Cake%20Birthday.jpg)

Nice photos.
  ;applause;

Ditto, what great pics - the aqarium one is lovely.

Lovely photos Maureen  :)

Yes, Maureen, many thanks for sharing these photos of your lovely, special youngster, Reece.  Hope you all managed to enjoy the fun and I hope Reece enjoys his birthday on Tuesday.

B&H

xxx