Reece goes away for Christmas. Again.

[Dewi_cool]

Mo, I never know how to express how I feel after reading your posts on this thread.

You are all heroes.

this & 

[xxMAIRxx]

Thinking of you all xx

[Kev B]

Mo, I never know how to express how I feel after reading your posts on this thread.

You are all heroes.

I can't sum it up beter than this. Be strong little soldier. X

[The_nun]

Tonight he went to bed at 5.30, after asking Darren, when will i feel normal again, i am sick of being sick.  Clever little fella, although normal to him is possibly far from you or i feeling normal.  The sickness may be down to a blockage in his bowel,  the xray today showed up a large solid form in his bowel but the barium tomorrow will give a better incline.

[ripple11]

Lots has happened over the last 2 days, and maybe when I feel up to writing I will be able to explain in more detail but for now.

Antonino is back and has called both myself and Stacey yesterday. Today Reece, Stacey and Darren went for an in depth meeting with him, I couldn't go as I was drawn to go for a random Drugs and Alcohol screening and if I refuse to attend it ican be classed as a positive, not had one for 8 bloody years and of all the days they pull me today. Anyway, the results.

Re: Boston. All up to date info is being sent.

Re: Transfer to Leeds, going ahead.

Re: Reece's immediate condition. Xray done today, Barium meal tomorrow. So sad to say but it looks like our hero needs the S T E P operation.

The S T E P is what we want done in Boston, that was if he needed it, by Kim Heung who invented it and who we are in contact with, but hey we all now the reality is major bucks so they say. Antonino reckons he can do it here, He wants to do it as soon as we have built Reece back up as he is being sick an awful lot and is on a steady decline. So short term plan is increase the TPN, transfer to Leeds, with a veiw of the Surgery being done by Antonino in Manchester then once the little fella is able to be transferred he can go to Leeds for post op care with Mr Puntis who is a specialist in the nutrient side and apparently has a very good team.

All this depends also as to if Mr Puntis will allow the surgery to take place in Manchester or if he feels there is someone with more experience in Leeds. We don't actually know as yet how many of these procedures have been done by Antonino or by Leeds surgeons, however what we do know is the Boston have done a great many with a high success rate.

It's chuffin hard...and so bloody sickened for Reece to have to go through all that again.

Info on the Boston website seems to show Leeds is one of the places that have performed STEP.

There are a few UK hospitals on there. I don't see why you couldn't have a choice of the one with the most experienced/successful surgeon?, given the NHS buzz word at the mo is "choice"

http://www.childrenshospital.org/cfapps/step/index.cfm?CAT=participatingcenters

[The_nun]

Lots has happened over the last 2 days, and maybe when I feel up to writing I will be able to explain in more detail but for now.

Antonino is back and has called both myself and Stacey yesterday. Today Reece, Stacey and Darren went for an in depth meeting with him, I couldn't go as I was drawn to go for a random Drugs and Alcohol screening and if I refuse to attend it ican be classed as a positive, not had one for 8 bloody years and of all the days they pull me today. Anyway, the results.

Re: Boston. All up to date info is being sent.

Re: Transfer to Leeds, going ahead.

Re: Reece's immediate condition. Xray done today, Barium meal tomorrow. So sad to say but it looks like our hero needs the S T E P operation.

The S T E P is what we want done in Boston, that was if he needed it, by Kim Heung who invented it and who we are in contact with, but hey we all now the reality is major bucks so they say. Antonino reckons he can do it here, He wants to do it as soon as we have built Reece back up as he is being sick an awful lot and is on a steady decline. So short term plan is increase the TPN, transfer to Leeds, with a veiw of the Surgery being done by Antonino in Manchester then once the little fella is able to be transferred he can go to Leeds for post op care with Mr Puntis who is a specialist in the nutrient side and apparently has a very good team.

All this depends also as to if Mr Puntis will allow the surgery to take place in Manchester or if he feels there is someone with more experience in Leeds. We don't actually know as yet how many of these procedures have been done by Antonino or by Leeds surgeons, however what we do know is the Boston have done a great many with a high success rate.

It's chuffin hard...and so bloody sickened for Reece to have to go through all that again.

Info on the Boston website seems to show Leeds is one of the places that have performed STEP.

There are a few UK hospitals on there. I don't see why you couldn't have a choice of the one with the most experienced/successful surgeon?, given the NHS buzz word at the mo is "choice"

http://www.childrenshospital.org/cfapps/step/index.cfm?CAT=participatingcenters

Thank you for that, that is something I can raise tomorrow, any info collated is so very helpful. Kep digging, for us please.

[ripple11]

 Bit more info..

 The "Nice" guidelines on STEP is here:

http://www.nice.org.uk/nicemedia/pdf/ip/385%20STEP%20for%20SBS%20overview%20for%20web%20240507.pdf

interestingly, one of the specialists involved in the guidlines (list of  6 of them 3/4 of the way down) is Mr Ian Sugarman. He is based at Leeds, and appear to be the main consultant there:

http://www.leedsteachinghospitals.com/patients/service_directory/index.php

Consultant name: Special Interests Inpatient Service Outpatient Service 
Dr SM Davison Paediatric Hepatology/gastroenterology St James's University Hospital St James's University Hospital 
Dr P McClean Hepatology and gastroenterology St James's University Hospital St James's University Hospital 
Dr John Puntis Gastroenterology, clinical nutrition Leeds General Infirmary Leeds General Infirmary 
Dr Sanjay Rajwal Paediatric gastroenterology and children's liver diseases, liver transplantation and post transplantation care St James's University Hospital St James's University Hospital 
Mr I Sugarman Lower GI surgery, inflammatory bowel disease, colonoscopy and surgical treatment of constipation. Leeds General Infirmary Leeds General Infirmary 


I  think I would be keen to get him involved.

[The_nun]

Thanks Ripple,

Hopefully today the Barium will not confirm the worst, ie blockage, then we will have more time to get a meeting set up over in Leeds with Mr Puntis, now like I said he may prefer his team to do the op, we want whoever is best at it or has more experience at doing it. Although Antonino said he has done it he never actually said how many. I will ask him this today. The reason I guess we are scared to have anyone else in the UK operate is because we trust so much Antonino in theatre. It is just everything else that is crap. Wish I had a bit of back up coming with me n Stacey today really as after the Barium we may not feel up to too many questions. We have a meeting with a Manager over there too about the complaints.

[ripple11]

Nice guidelines say that STEP operations/results have to be sent to Boston for their collection/anaysis. Hence Leeds and other UK hospitals on the Boston list.
 Manchester  isnt on the list...which seems to suggest they haven't done the op?, or not reported it.?

Good luck today.

[Laxie]

Ripple, you are a STAR for digging out all that information for them!  Thank you soooooo much.

Maureen, it's too late to be there from my side of the river today, but if you need back up at any point in the near future just give a shout.  It's only a short trip away. 

I hope the Barium test goes well and know you will pull the strength from some corner of your being to get through this day and get the answers you need.  Will be thinking of you all. xx

[cia260895]

Best of best luck Mo and all, tricky deciision you will be faced but together you will choose what you all feel is the right 1 xxxxxxxxxxxxx

+ wd ripple although it was all to complicated for me to take in summary by someone would be appreciated ....

[Laxie]

Any news?  Been thinking of ye.  xx

[GreekStein]

Any news?  Been thinking of ye.  xx

Thinking out loud?

[The_nun]

Yes news in, but been at work this am.

Stacey, Reece and I went along to Manchester, we were met by Antonino, who was so nice to us and Reece it made the day very hard. Reece had his Barium, plus some other tests relating to x rays and transit time. There is no obvious blockage, however his bowel has dilated again. Antonino wants to be the one to operate, so I asked him out right how many S T E P's he has done, his answer was there has been 1 done here. Now that may be due to the operation to lengthen the bowel there is the Bianchi, far more technical than the S T E P apparently. He also said that there may have been up to 80 done in Leeds but I am not confident on the Leeds figure until I ask Mr Puntis himself.

We stood our ground and said that we definitely want to go ahead with the move to Leeds, so Antonino faxed the referral to Mr Puntis yesterday. Today I called Mr Puntis secretary to confirm this had been received and yes it has. She also said that he has been prioritised to see him. Not sure how long this will take but mean time Reece is going down hill more each day. Today he has remained on the sofa at ours and started to become incontinent again. His vomiting is still occurring and he has zero appetite, nothing zilch does he want to eat. I confronted Antonino twice yesterday about this and he said he wanted to see the results of all the bariums and X rays, although he was there more or less through all the procedures he needs to look at them all together, then the second time I said what is the matter with him being ill all the time and not eating etc and that we are very worried about him, he said increase the TPN to 5 nights and mention to Mr Puntis about it. But with the way Reece has been today, if no improvement tonight I feel we will be admitting him to Calderdale hoping that they will transfer him to Leeds and not Manchester. But lets see how he goes this evening first.

We also had an in-depth meeting with the head of Theatre and Ward Manager and Head of Nurses. I hope what we said will make a difference and hopefully save another family the trials and tribulations that we feel we encountered whilst being under Manchester.

We just want to leave this all behind now and move on to Leeds where hopefully we will find a team that works together more and gets our little fella sorted out. He has had enough at the minute. We need to focus all on getting Reece well again, I am not sure if will like Leeds or not or whether it is the right move but what I can be certain of is that it can not be no worse.

[cia260895]

wow talk about stressful,best wishes and thoughts to all of you,must be a really trying time,lets ust hope the little man picks up on his eating soon and the hospital transfer works xxx