We’re back home in Portsmouth!!!!!
After 60 days of being in isolation on Fox ward, Anabelle
was discharged from Great Ormond Street on 21st September.
 |
| 7.00 am medicines!!!! |
Prior to leaving GOSH we had training on how to do
her medicine as we have to provide medicines at 7.00am, 12.00, 3.00pm, 5.00 pm
and at 10.00 pm.
Not just one medicine
mind but a whole bundle of them!!!
In
addition we have to make sure that Anabelle takes in at least 1000ml of fluid
each day which is a mission as since having mucasitis she will not even looked
at a bottle so all fluids are currently been given into a pump machine via her PEG
- an overnight milk feed of 480ml, then
during the day two lots of
water bowless
providing the remaining of the water. Our first week at home took alot of getting
used to.
Even though we are home we are in semi-isolation,
which means we are unable to take Anabelle anywhere public i.e. shops,
restaurants, pubs; anywhere where there is people which pretty much means
everywhere. Our only outlet is to take her for strolls down to the beach.
We also have to be very very careful with
people coming to visit, which being social people as we are is taking time to
adjust to.
However all that said, Anabelle is coming on leaps
& bounds, her tantrums/irritability has now calmed down and she is
smiley
again, enjoying being on her feet
& even giggles daily, which is a sound we didn’t hear for a long time –
this all makes being at home so much easier. She is becoming more like her old
self each day.
On Mondays, our community team comes to the house
to change Anabelle’s Hickman line dressing & take bloods.
We also still go to Day Clinic at Great
Ormond Street which gives us a chance to pop back onto Fox Ward to say hello.
Our time on Fox Ward had some high & lows,
starting with the highs; we made some lifelong friends & really had a laugh
and when you’re in the situation we were in you really need that.
All of the nurses on Fox, also made our
journey so much easier, by not just only doing your jobs caring for Anabelle
but again having a laugh with us. Coffee being brought first thing in
the morning is a real bonus.
A big thank you as well to Adele (play
specialist), student nurses & volunteers who everyday came in and played
with Anabelle so we could go & have lunch together most days, again when you’re
in isolation to go and get lunch together was important for our relationship
& sanity!! The jobs all these people do is really unbelievable when you
consider what they have to face on a daily basis, which brings us onto the
lows. We were very unfortunate that it was one of the worst times they have
ever had on Fox Ward as four of the little ones lost their battle far too
early,
our hearts go out to the families
of Fiz (11), Rosanne (9), James (20 months) & last but no mean least beautiful
little Richard (10 months).
On more of a positive note, we would like to congratulate
Theresa & Shane on the great news of your impending pregnancy – Thank you
for your support via this blog on your experiences & please keep us up to
date when Corey s brother arrives.
Next
year we will definitely have to catch up.
Anabelle
has been on such a massive journey
and although we know she is not out of the woods just yet, her progress
has been amazing and we look forward to seeing her progress each & everyday.
