Reece goes away for Christmas. Again.

[The_nun]

Not what we expected or wanted to hear. Reece needs a second opinion, his surgeon wants this as he is at a loss. His Colon is larger than his surgeon has ever seen and on top of this he really doesn't know the answers as to how to move forward, as parts of  his small bowel is dilated again and he doesnt know what the cause is. If he goes in now will this reacure if he doesnt go in ......... He is open to guidance and is contacting Kings in London and Birmingham, Birmingham being the most likley as they are the transplant hospital where Reece was years back. These are the two with the most experience. He wants to find out if there are any new ideas but with Reece being quite unique he thinks it unlikely. He also assures us that no surgery will take place without him doing it or being there. This is a surgeon that is really high up and one that is recognised in his field. To ask for a second opinion worries me greatly. Feel sick. Reece is an every day child to look at,  one wouldn't know anything was wrong. It hurts so much ,he also knows everything as this is the way they do things now, he was part of the whole meeting and he really participated in the decisions or they made us feel he did, he was gutted and it is really a lot for a child to hear.

Not sure what else to say.

Maureen.

[RED-DOG]

I don't know what's right or wrong, but I do know that Reece being involved in the discussions and decision process is really tough on you all.

Our Tommy was much younger so it was easier to justify  my desire to keep the harsh realities of his illness from him as much as possible. Of course not everyone agreed with me, but it wasn't their decision. IMO, there is a limit to how much information a 7yo, can process or find beneficial. That said, he wasn't daft and if he asked questions I tried to answer them truthfully.

I understand that Reece is considerably older, and in his case the decision to involve him is probably the right one, but that doesn't make it a any easier.

We're all still rooting for you.

XX.

[tikay]

A bit lost for words here, but the Big Man has faced these problems again & again, & seems to take them in his stride.

Fingers & everything else crossed.

[The_nun]

Glued to the telly as usual.

[RED-DOG]

Blimey! He's a big lad now Maureen.

[TightEnd]

sorry to hear about the problems Maureen.

What's Reece into now?

(i'm not in touch with what's in with boys of his age!)

[RED-DOG]

sorry to hear about the problems Maureen.

What's Reece into now?

(i'm not in touch with what's in with boys of his age!)

Girls.

[The_nun]

With him being on TPN it helps him to grow as it goes directly into the blood stream. If he just ate he sort of stops growing as he doesnt absorb food or vitamins. He has grown 3 cm since early nov. He also weighs almost 31 kg now due to the TPN. Reece thinks he would prefer to stay on TPN instead of surgery but that is not designed for life ling.

He loves his Xbox Tighty. Yes Tom Girls. Plus he has a valentine request from a chick he is keen on she is a kerper because she plays xbox with him.

[Kev B]

Can't believe how big he is.

Looking at every option by asking for a second opinion, but it must be a worry and frustrating given he is the expert in his field.

Girls.......girls nooooo. Let him enjoy himself some more before he gets his heart broken. 

I hope they find a way forward soon for our brave young soldier. xxxx

[Tonji]

Thanks for the updates Maureen. All the best from me.

[Rooky9]

Best wishes to you all. x

[GreekStein]

How's the not-so-little-these-days-doing Mo?

[The_nun]

Hi Cos and anyone else that follows Reece's journey.

He is very up and down both in his moods and his health.

He is still testing his boundaries at times, nothing major just typical stand off's when told to do something, not with me but his mum. He is also quite down at times with himself, saying he hates being like he is and other things that really hurts to hear such a young lad feeling like he does and we can't make it better for him. He spends most of his time in his room but i guess that is where most 11 yr olds are.

Today he is in Leeds Hospital as there may be a problem with his central line so he is waiting on tests, hopefully it is nothing and he will be home again tonight ready for his sleep over here tomorrow.

We now know the name of the surgeon / specialist that we will seeing in Birmingham and are waiting on the appointment but with Reece some days not eating then when he does being sick,  Leeds think we need to act soon. We also need to get him off the TPN again as we are very limited to vein access for new lines.

The road is long.

[The_nun]

Best wishes to you all. x

Oh my ,Rooky9 how are you our hero. I do hope life is treating you well. xx

[The_nun]

Update but mixed bag here as usual.

First as always Reece.

It has been decided at Birmingham Reece requires major surgery. They would prefer his surgeon at Leeds to perform it as he is most familiar with Reece's bowel. The surgery they hope to do is called the S T E P which is what this surgeon wanted to perform a few years back but couldn't due to the condition of his bowel then .

It will hopefully get rid of a narrowing Reece has which is causing a lot of pain and vomiting and also lengthen the bowel. This will not be a straightforward op and we are not sure how many,  if any Ian Sugerman (his surgeon) has performed,  but we have every faith in him. It will be a very long day for all and as for the operation we have no idea how long it will take.

Reece is starting to worry about it and we have made him promises that all will be OK...., you have to. We will be there throughout as always like the three of us have always been. His little sister will be cared for by a family member for a couple of nights so that we can focus on Reece alone. We have booked some time off work then Owen, Reece's step dad will book time off following on from ours all being well.

Even though I am not a prolific poster I still frequent blonde ( no playing poker any more as no time ) and would like once again to ask for some One Times for Reece.

STACEY...

All she has been through in her own health and caring for Reece and coping fantastically, plus having a baby girl has gone and got herself a 2 1 in Law. MY goodness she is so strong a person and we are so very proud of her to have achieved this whilst holding it all together. Next year she does her Masters.

Me health wise,  almost home and dry, got over the big op I had last year and a little one this year, just one more on July 4th. Settled into my medically restricted position with the same company..funny enough I saw one of my favourite people pass by my window the other day but did not get his attention..B4Matt.

So folks, live every day like it's your last and always make sure you never part on a bad word.


xx