Amelie, what a day!

[Guest guest]

Dear All

I will try to explain , because i am sure overseas you will have

different hospitals and things, so its like this,

1 first day back from New Year

2 everyone appreared to be either depressed or hungover not sure which

3 TPN ECHO and ECG, CT SCAN all ordered none were done!

4 got there today cross, very cross, not usually me, I know if Simon

or Flo were on they must have had days like these in the NHS

Although Amelie is still crying she is not as bad I have to say at one

point I thought we saw a shimmer of a smile cant be certain but it

could have been.

I went in and let rip, why this not done, and so on? so today the NHS

has finally got cracking, CT scan done will get report tomorrow, but

we were told the left lung is as bad as they thought, they were

looking for a blockage and apparently if there were a blockage she

would have gone straight to theatre, so we are not too worried here,

in the meantime we missed the cardio team( wouldnt you think they

would liaise with each other they are two mins from each other on the

corridor), so they rang to ask her to come back because they have lost

the ecg 24 monitor print out from the 28th December, so no one knew

the results, and with the bradys they want to know whats going on,so

they were to repeat this but she said no too late!! will try tomorrow,

bloody marvellous!!

In the meantime she has had to episodes of de sats down to 49 and 51

blue lips etc all rather worrying heart rate low 60' s although she

did have chloral for CT scan maybe this is why, also blood pressure

low 44 not sure what it should be in cardiac child but she is usually

65 to 80, so after the second desat we said we wanted to see a doctor,

she came looked her over never seen her before, and she had another de

sat in front of her, good girl amelie she usually looks too good when

you call someone out, anyway she said to keep a close watch and she

will page a registra, at this point we had to leave to pick kids up

for bed! so Darren will go back to check all is ok, because now my

hearts in my mouth.

They think she definately aspirated on news years day and her meds are

probably coming up as well, so this could explain stuff. FRIDAY will

be decision day on what kind of surgery we will push to re do nissen

rather than dissociation its very invasive, according to a few.

After not having food only fluids since saturday she has lost weight

she now weighs 8.6kg she was over 10kg in November, at last as we were

leaving the TPN showed up it was order yesterday!! only to discover

the central line was out in her nappie blood everywhere, I thought oh

my lord shes never going to get fed, panic over it can go peripheral,

so at last tonight she will get some.

Thats it think I remembered it all

Any news from Simon or Flo if your there let us know how is.

Bye for now

Lesley x