Reece goes away for Christmas. Again.

[The_nun]

Just popped in to update those of you that still follow Reece's progress....

Reece's results in, extreme dilation of the bowel, lot worse than last sept when we knew it had started to dilate, needs surgery, which will be discussed on the 22nd.    Veins, which we were really worried about, Manchester said he was down to his last 2, already using one of them, but test showed some of his larger veins are completely blocked but several others can still be used. SEVERAL...much better than we thought, this will also be explained in more detail weeka Monday.

His savings book has been updated to add his interest on and deposit some funds that still remained from past donations before Kev & Chris did their fund raising events, once the old funds are all in, as have been in another account I will scan and send to Kev to show no withdrawals have been made only deposits.

 Thanks all for asking about him.

[Laxie]

Thanks for the update Maureen.  Thinking about you all and hope they get the wee Lad sorted soon.  xx

[RED-DOG]

Thanks Maureen.

Update us a little more often please, otherwise I may have to put you across my knee.

[Kev B]

Thanks Maureen.

Update us a little more often please, otherwise I may have to put you across my knee.

I agree with everything in this post, well said Tom.

[turny]

best wishes to reece he is a brave young man x

[tikay]

Just popped in to update those of you that still follow Reece's progress....

Reece's results in, extreme dilation of the bowel, lot worse than last sept when we knew it had started to dilate, needs surgery, which will be discussed on the 22nd.    Veins, which we were really worried about, Manchester said he was down to his last 2, already using one of them, but test showed some of his larger veins are completely blocked but several others can still be used. SEVERAL...much better than we thought, this will also be explained in more detail weeka Monday.

His savings book has been updated to add his interest on and deposit some funds that still remained from past donations before Kev & Chris did their fund raising events, once the old funds are all in, as have been in another account I will scan and send to Kev to show no withdrawals have been made only deposits.

 Thanks all for asking about him.

Miixed news, then.

Stay strong Maureen.

xx

[trafficjam]

best wishes to reece he is a brave young man x

+1 

[Rooky9]

Best wishes Mo.

[The_nun]

Well today we had the long awaited appointment with both Mr Puntis, our new Gastro specialist consultant, and met Reece's new surgeon Ian Sugarman, seems a lovely bloke. Things are a lot better than we thought, they obviously can not definitely say they will ever get Reece free from TPN, but unlike a few months ago when they more or less said they were not sure there was anything they could do for Reece, they think it may not be an impossibility, but defiantly not in the near future, they are going to take it a lot slower than Manchester was, where Reece was pushed to almost starvation, and trust me I mean skeleton like. Possibly this is because Reece has come along fantastically in the 2 months that they have made changes to his TPN calorific amounts and the way they administer it. It is just a lot simpler and easier than it was before.

We knew surgery was going to happen and when we saw the results for ourselves today on screen just how dilated the bowel is we have to wonder in awe just how he copes with the discomfort. It is that big that his belly is very protruding. Leeds wanted to build him up before going in again but with his progress and also the Mr Sugerman says with the discomfort too he hopes to operate in May. He does not know wether he will be able to do the S T E P on him until he opens him up, as where the dilation is it may not be performable due to another vein entering the bowel around the area and he has already lost the other one from the last lot of surgery. So it may be that he will have to taper the dilation therefore removing some of the much needed bowel, and it is not something he does on short gut patients but possibly has no option, he has to make Reece more comfy. Also if he does have to do this it will be unlikely help Reece absorb more food or get him any closer to coming off TPN. He is going to contact Antonino for info on his Bianchi op he performed so he is aware of areas that may be of concern etc.

The veins, yes he has lost 2 / 4 of the main ones which we use to put lines in order for him to go on TPN, but he doesn't feel that we are in a postion where we need to be too concerned as yet.



If the worst happens and we get down to his last 2 veins then he will have no option than to return to Birmingham and go on the small bowel transplant list, which we really do not want to happen as the success rate of surviving the op was , when we were on it last time, around 57% and IF a successful one was performed life expectancy was 5 - 10 yrs. Although these figures have possibly improved as it was 3 years ago we were on it.


His weight is fluctuating between 16.5 and 17 k and we asked today if this is solely from the increased TPN but they seem to think not, they actually now think he may be absorbing something out of the food he eats but not all. So that in it's self is a good sign.

So all in all we are very happy the way the new team are heading. A lot slower and more professional in procedure, we do miss the way we could just phone Antonino and see him asap, but at the end of the day we almost lost him over there too, and the mistakes and slackness of the the whole hospital was far from acceptable. We are absolutely dreading himhaving to go through major surgery again, he has always known what is going on at the hossy, but as he is getting older it is unbelievable how much he knows.

So yes, we do think we have made the right decision in moving him and just want to get May over with.

[RED-DOG]

Overall, it seems very positive to me Maureen.

xx

[The_nun]

Cheers Tom, we think that too and he is on top form himself apart from tummy, never seen him with so much energy.

BTW, did think twice about updating at such a sad time for Vinny as I know he does read this thread. Our thoughts are constantly with him and his. xx

[Laxie]

I'm glad it's all going in the right direction.  Hugs to the wee man and you too!  xx

[Claw75]

lots of positives there Mo - fingers crossed x

[ripple11]

 Great to hear you are happy how things are moving forward,.....and Reece is on good form.

[celtic]

Cheers Tom, we think that too and he is on top form himself apart from tummy, never seen him with so much energy.

BTW, did think twice about updating at such a sad time for Vinny as I know he does read this thread. Our thoughts are constantly with him and his. xx

Keep posting Mo, also, see PM i sent you a couple of hours ago.