Kinda puts it all in to perspective huh ???

This came through my e-mails ..

Hi all I hope we find you and your families all well and happy
Just a quick update on T**. 
We are still waiting for his new heart, at the moment he is in hospital again, he is losing any protein that enters his body and they are now testing him again for protein losing entropathy which they are pretty sure he has.  Because he is not getting enough protein (he is losing it through his gut) his body is swelling with fluid. 
He is getting overnight feeds through a tube which has helped a little but he needs to get more replacement.  they are talking of putting a line in to give him a treatment every week or fortnight of albium which is a blood product I think that has protein. 
His lungs are pretty full of junk as well at the moment as he has fluid in them which in turn prevents him from coughing up the gunk so they are getting fuller and fuller. 
Poor little guy I feel so bad for him with all he goes through he still smiles and just lays back and lets the student drs poke and prod him.
I know this sounds awful for some poor family in Australia who will lose someone for tom to have a new life but I hope he gets a new heart soon I am not sure how much more he can take. 
I sound horrible saying that and I am sorry for wishing for it.
T**'s mum

I just want to cry for T** and his family .. and his Mum .. 10 years old and having been through all he has and now for this to be happening ...
.. it scares the cr*p out of me that this is happening to this little guy .. for both them and also for our own personal stuff ..
Prayers and hope and lots of finger crossing that a new heart comes soon .. and prayers for the family who's loss will help my friends little guy to get a new chance at life .

Typical ...........

Arggghhhhh !!!

Typical ..

C5's echo appointment is on the same day that the boys have their first ever Cross Country School event ...

I've rang to try and change the appointment .. and it was like I was asking for the world ...

They said they will get back to me tomorrow if they can change it ..

He really, really wants to do the cross country just like everybody else, understandably ..

I swore that his heart wouldn't be the 'cause that he couldn't do things just like everybody else .. and here is the perfect example!

Grrrrr!

Mail .. just when you least expect it .. part II

Well the mail this morning had an appointment for the visiting paediatric cardiologist later in September .. so that's one question answered ..

The answer to the next question is solved too ... the year has "flown by" .. and when they said annual to bi-annual checks and visits last year ... well looking back it was October last year he was last seen by the specialist from Auckland ..

So there you go ..

Fingers crossed all goes well ..

Pays not to panic huh ??

Blood pressure slowly coming down ...

Yeah right !!



PS .. another 500g lost .. so 3kg in total in 2 weeks .. and this week I was able to make "choices" .. so could choose what I like out of 2 or 3 things in a meal option .. yay ...

Mail .. just when you least expect it ..

Sometimes you get mail you are waiting for, sometimes you get mail that you least expected that makes you happy, sometimes you get mail that brings you back to reality, and gives you goose-bumps ..

Well for some it's not a major, but for me, yesterday we got mail for C5 to have an echo ...

Why does this give me goose-bumps ..

Well because I have to stop thinking this little boy is just like everyone else .. and when the appointment comes around, I can see vividly on the screen that his little heart is struggling, and that ... that "shocks" me back to reality .. and leaves me morose ..

Yes I should be celebrating, he has survived all the odds, looked his maker in the eye more than once, but my brain the way that it's wired .. it starts wondering .. why do they need to do this when they said to leave it, what will they find, how much pressure is his heart under now, what new meds will they give him .. and the ultimate question ... how much longer am I going to have this mischieveous and cheeky little monkey ...

Too many questions. .. and some I really don't want answers for ..

Some times I just have to block it all out ..

Life huh? ..