With
no fluid build up in Lola's chest cavity (chylothorax)
since the operation 3 weeks ago, the doctors decided
that Lola was well enough to go home on December 14.
Fantastic! So, George packed the car with all the
presents and things that accumulated over the past 3
weeks and drove back to Kingston. So, Lola was home at
last with her Mum and Dad. What a relief, but we all
know that these are early days in her recovery. Lola
will remain on the strict no fat diet for 6 weeks with
regular hospital check-ups.
The
following diary is in reverse chronological
order
Tuesday
21st December 2010 - Lola in Emsworth
George took Lola to
Southampton General Hospital today for a check up. All
went very well. The doctors were happy with her
progress since leaving hospital a week ago and took
her off some of her medication. They called into our
place in Emsworth on the way home. We thought Lola was
looking well. She is now walking, though remains in a
delicate condition. Danny, Lisa and Joe came in to see
Lola while she was here, which was nice.
Lola
showing her drawing skills with this snowman
Joe is
keen to have a go himself
Lola
and Lisa having a serious chat
Lola
and Lisa played nicely together with the
farm
Story
time with Grandma
Brian
was inspired by Jamie Oliver to make special mince
pies (with gennaro)
Friday
17th December 2010 - Lola at home
Lola has been home for
a few days and is doing well. She has not found her
feet as yet after her stay in hospital, but she has
helped her Dad with the Xmas tree and yesterday was
invited to Kingston Primary School to meet her new
class mates and to see Father Christmas. Here is
George's description of the visit in words which
express so well what we all fervently feel and hope
for our lovely little girl.
"She
was somewhat overwhelmed, and to be perfectly honest
so was I. Verity, her Pre-School key worker and Sammy
her teacher had organised a collection for Lola, and
had bought her a Nintendo DSi and games. Given to her
by Father Christmas! A lovely thing to have done. It
shows how much Lola is valued and cherished. Sammy and
the school have made every effort to accommodate our
somewhat erratic and undesired lifestyle! Lola has
been through so much, especially this year, and her
resources and spirit have been challenged and
stretched beyond belief. I only hope this dark time is
over, and that Christmas and the New Year will give
our lovely Lola the healthy and happy future she
deserves."
Lola
at home with her Christmas tree
Lola's
first sight of snow at home and there's no stopping
her!
Lola
opening the present she had from Father Christmas at
school
Tuesday
14th December 2010 - Lola goes home!
Here is a photo from
George of the little girl all set to leave hospital.
"One happy little girl, not sporting this season's
fashionable chest drain!" as George put it. And
doesn't she look well!
Lola
was at home for 2 months after her first stay in
hospital from July to September following the the
Fontan operation. However, the fluid (chyle) again
built up in her chest cavity and she was admitted into
to Pediatric Ward E1 of Southampton General Hospital
on Nov 24 where she underwent yet another operation to
re-instate the drain in her side. On Dec 8 surgeons
performed a thoracic ligation to stem the chylothorax
and a pleurectomy to remove the lining between the
lung and the chest wall. Lola was finally discharged
on Dec 14.
For Lola's
earlier spell in hospital go to . . . Lola
in hospital 2010: July to September
The
following diary is in reverse chronological order.
Sunday
12th December 2010 - Lola is improving
Jean and I went over
to Southampton General Hospital for a few hours today.
Mary was back on the ward from Lewes. Lola was in good
form. Mary's friend Holly had made a cheeky monkey toy
and put together a story book to go with it called
'The Adventures of Cheeky Monkey', starring friends
from Lewes whom Lola knows. A lovely idea. We looked
after Lola while Mary and George had a Sunday roast in
the cafe.
View
of Lola's ward with sticker board, CBeebies on TV and
toys everywhere.
Jean
reading 'The Adventures of Cheeky Monkey' to Lola with
the cheeky monkey looking on
Whose
a cheeky monkey, then, Grandma?
Mary
brushing the knots out of Lola's hair
Friday 10th December 2010 - Lola's
progress
Lola continues to make
progress after her recent operations. She is now free
of nearly all the attachments and was actually able to
walk to and from the bathroom while Jean and I were
there this afternoon.
Lola
having her hair washed in the bathroom
Lola
walking back to her ward from the bathroom helped by
her Dad and Nurse Becky
The
next step was to get the tangles out of Lola's
hair
Lola
using the badge making set that the Southampton
footballers gave her yesterday
What a
nice smile from our lovely girl
Lola's
school class having their nativity play with Lola
present in image form at least!
Lola was on local TV yesterday when Meridian News
showed the visit to the hospital of some of the
Southampton FC footballers and their manager. We
missed the transmission, but Mary gave us the link to
the repeat.
http://www.itv.com/meridian-west/fullprogramme/
It is 16 mins into the
half hour programme, but will only be on till later
today.
Thursday
9th December 2010 - So far, so good
Lola continues to make
progress. The drainage tube was removed from her chest
yesterday, which was the main source of discomfort. No
sign of any fluid. The catheter was also removed while
I was there this morning. After I left, Lola got up to
go to the toilet, a small but significant step towards
recovery. In fact, Lola was looking so much better
than when I saw her on Tuesday and was managing to
reposition herself in the bed. She was delighted with
two big parcels.
This
was the first of two parcels that the postman brought
for Lola
Lola
was delighted with the presents the parcel
contained
She
particularly liked this glittery bag with a long
handle
The
second parcel was even bigger!
and
contained a very special advent calendar
Lola
having a laugh with her doctor
And
finally, George took this this one of Lola and
me
Tuesday
7th December 2010 - Lola is recovering
Much better news
today. Lola is making a slow but steady recovery from
her emergency operation on Saturday. She has been
moved to a small ward all to herself. She is alert and
sharp and eating again, though still in considerable
discomfort. The dreaded drain may be taken out soon,
hopefully tomorrow morning.
Two nurses aided by
Mary and Jean, managed to lift Lola into a partial
sitting position in the bed. Although she was far from
happy doing this, it certainly lifted her spirits (as
shown in the photos), as well as those of everyone
around her!
Lola
got a present from Nurse Jo for being such a brave
girl
Lola
also got a sticker for her poster
Lola
helping her Dad to stir the plaster for the special
fairy mirror
Lola
more her old perky self, entertaining us with a nice
smile
Sunday
5th December 2010 - Lola has operation
Lola was very poorly
yesterday with fluid again building up in her chest
cavity (called chylothorax). So, the surgeons carried
out an emergency four and a half hour operation last
night. Mary rushed back from her show in Lewes to be
with her (thanks to neighbour Martin for the lift).
During the operation the surgeons performed a thoracic
ligation to stem the chylothorax and a pleurectomy,
which involves removing the lining between the lung
and the chest wall.
Jean and I went over
this morning. Lola was being attended in the high
dependency ward and was attached to numerous tubes and
wires. Mary and George are fantastically positive, as
we all must be. But it is a very worrying time.
Thursday
2nd December 2010 - Lola in the snow!
Lola's wish was
granted today. Her Dad, with the help of a student
nurse, got her out of the hospital, complete with
drainage tank and all, to experience what was the
heaviest snowfall for many years. And wasn't she a
happy girl. Meanwhile, her Mum is stuck in
Lewes.
Sadly, relaxing Lola's
no fat diet did not work out and the fluid is flowing
again. There is unlikely to be any decision about
future treatment until next week.
Here are a few more photos of the little girl taken
yesterday when Jean and I visited the hospital.
Lola's
ward with the car waiting by her bed
Lola
was pleased with her singing reindeer and her new Fi
fi toy set
Off
she goes down the corridor to the playroom
Lola
using the new washing machine
I won
that time, Grandma!
Tuesday
30th November 2010 - A waiting game
Jean and I visited
Lola, Mary and George in Dolphin Ward this morning.
Lola was generally bright, though had a few bad spells
when she had pain from the drainage tube in her right
side. It will be so good when the tube comes out, but
not just yet.
The plan is to
gradually introduce fat into her diet and then wait to
see what effect that has on the flow of fluid. It
would be brilliant if there were no effect, though no
one is counting their chickens. We are all praying for
the best. The little girl so deserves a break.
Lola
with her new illuminating snowman
Lola
loves to eat raw lemon, but . . . oooo . . . it is
sharp!
Lola
playing snap with the girl from the next bed, and her
Mum
Lola
giving Grandma a quick game, while her Mum and Dad
have a chat with nurse Becky
Sunday
28th November 2010 - Lola is doing well
Danny, Lisa and Jean
went over to Southampton General Hospital to see Lola
this afternoon. George had stayed the night with us in
Emsworth, as he is doing this evening. while Mary
holds the fort in Dolphin Ward. I was not able to go
due to my ongoing chest infection, but Lola drew a
nice picture 'for Papa who has a bad cough'.
The news is good,
though it is early days. Lola had a scan today which
showed no sign of fluid and the surgeons plan to
remove the drainage tube in an operation tomorrow.
What happens after that is not sure. But Lola remains
perky and enjoyed having Lisa to play with today.
Lola
having fun with Grandma
Lola
relaxing while watching 'Jungle Book'
Lola
having a laugh with Grandma
Wednesday
24th November 2010 - Lola is back in
hospital
I had hoped that I
would not have to re-open this page, but sadly Lola is
back in hospital. She was at home for 2 months after
being discharged from Southampton General after her
last operation. She had been on a strict low fat diet,
and seemingly making a good recovery from her last
operation, but in the past week the fluid has again
built up in her chest cavity.
She spent one night in
Brighton Children's Hospital (Nov 23) before being
transferred to Southampton General Hospital where
today she underwent yet another operation to
re-instate the drain in her side. Mary and George are
with her in the high dependency ward. There are
discussions ongoing with the consultants about what
further action to take.
Jean went to see Lola
this afternoon. I have a bad chest infection so could
not go. Lola was chatty as usual, almost 'home from
home' in the hospital. But this is a very worrying
time. Here is a photo of the little girl, showing the
drain in her right side and the canula in her left
wrist. The oxygen is available on her right shoulder.
For Lola's earlier
spell in hospital go to . . . Lola
in hospital 2010: July to
September