LOLA IN HOSPITAL - JULY TO DECEMBER, 2010
SUMMARY
The
Fontan: Lola
went into Southampton General Hospital on Tuesday July
6 for stage three of the heart surgery for Hypoplastic
Left Heart Syndrome. The operation (the Fontan) was
carried out the following day (July 7). The operation
was longer than expected at around 7 hours, but it
went well.
Lola was kept in
hospital for 6 weeks after the operation due mainly to
the build up of fluid (chyle) in her chest cavity (a
condition called chylothorax). This fluid had to be
continually drained by a tube in her chest. After 6
long weeks, Lola was finally discharged from Hospital
on August 16. The final X-ray showed a clear chest
cavity.
However, after just
three weeks at home, Lola was not well and X-rays
showed the fluid was again building up (chylothorax).
She was re-admitted into Southampton General Hospital
on September 7 and the drainage tube replaced. Lola
went back onto the strict no fat diet. Everything went
well and after a final scan of her chest showed no
fluid build up she was allowed to go home on Sep 18.
Chylothorax:
Lola was at home for 2 months but 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.
The full story of this
latter stage of the recovery is on page . . .
Lola
in hospital: Nov - Dec 2010
DIARY
from July 6 to September 18
(in
reverse chronological
sequence)
Saturday
18th September 2010 - Lola is home
Wonderful news. Mary
and George were able to take Lola back home to
Kingston today after the final scan of her chest was
all clear. But this is early days. Lola came home
before only to have to return to the hospital
following a build up of fluid. But she will be on a
strict no fat diet for another 4 weeks which should
help her full recovery. Lola will go back to the
hospital on Thursday for a check up and will be
monitored regularly.
Friday
17th September 2010 - Lola coming home?
We had some great news
from the hospital today. Yes (fingers crossed) Lola
may be coming home tomorrow! She had the drain removed
this morning and will be discharged provided tomorrow
morning's X-ray shows no sign of fluid. There has been
none for the past four days at least. Mary rang to say
Lola recovered quickly from the little operation to
remove the drain and was the life and soul of Ocean
Ward for the rest of the day. Jean went over this
afternoon and Mary took the photos. There is an
amazing video of Lola dancing in the ward.
Unbelievable.
Lola,
giving the 'all clear'
"What
would you like with your tea, Mummy?"
Lola
taking her new Sylvanian Families for a spin in the
hospital car
Lola
decides the hospital car needs a clean
Lola
remains on her no fat diet, but likes her
celery
Monday-Tuesday
13-14th September 2010 - Lola in
hospital
Jean and I visited
Lola on two successive days, partly to collect and
deliver George's washing!
Lola was not too good
on Monday, but on Tuesday she was a transformed girl,
bright and perky. She was really pleased with a pink
cuddly cat which she immediately named 'Milly'.
The cannula has been
removed from her arm, but the drain is still in her
side. Good news is that there had been no fluid for
the past 2 days and last night's X-ray showed the
chest to be clear. So, fingers crossed! She hated
having her dressing changed.
George came back to
sleep at our place in Emsworth as there was not enough
room for both him and Mary in the hospital. He said
that Lola was absolutely overjoyed to see her Mum
again when she arrived from the Top Drawer show in
London.
Dr
Lola checking on the health of the 'baby' in the
playroom
Lola
and her Dad walking along the corridor in Ocean Ward
carrying the drain
Lola
with her cuddly pink cat, Milly.
Lola
introducing Milly to Nurse Mike
Friday
10th September 2010 - Lola in hospital
Jean and I went over
to visit Lola this afternoon. Mary had gone to London
to set up her stand for the 'Top Drawer' so George was
holding the fort on his own in Ocean Ward. He was a
busy chap. Amazing how much there is to do. He finally
managed half an hour lunch break while we looked after
Lola.
Lola changed wards
while we were there, but she just moved to another
single ward right next door. We bought a few toys in
for Lola. The one she liked best was the pack of
coloured pipe cleaners.
As shown in the photos
Lola now has a drainage tube in the right side of her
chest and a canula in her left wrist. But despite all
this she was basically cheerful.
"Grandma.
If that's a spider, it should have eight legs"
Jean
arranging the pin board in Lola's new ward. It was
George's birthday yesterday!
Lola
having fun with the pipe cleaners
Wednesday
8th September 2010 - Lola back in
hospital
I really hoped I would
not have to say this, but sadly Lola was re-admitted
into Southampton General Hospital yesterday (Sep 7) as
a result of the build up of fluid in her chest cavity.
This was not entirely surprising after seeing her at
home on Monday when she was not well.
Jean and I visited
Lola in hospital this morning before she had the
operation to replace the drainage tube in her chest.
She was not herself and was anxious about the
operation, but her spirit was amazing. She played with
her playdough, went for a short ride in the toy car
and watched the Wiggles on TV.
Beep,
beep. Here comes Lola.
. . .
but the effort was too much for her
Monday
6th September 2010
Jean and I went over
to Kingston this morning to spend a couple of hours
with George and Lola. Lola was clearly not well, but
her spirits, as usual, were high. We all went for a
walk through the village, though Lola was too weak to
do much walking.
Lola
taking her dolly for a walk in the front garden
Lola
having a go on her Mum's new scooter
Wednesday
18th August - Lola at home
Here are a few snaps I
took when Jean and I went to visit Lola at home in
Kingston, near Lewes. Lola is so happy to be back home
with her family again.
Lola
on the new climbing frame that her Dad and a friend
built for her while she was in hospital
Lola
and her Grandma having a good laugh together. That was
a good one!
Lola
having fun with her Papa with a blow-up whale
We
paid a visit to Mary's studio in Lewes. I wonder what
George is telling Lola?
Tuesday
August 17 - Lola is home!
We are all delighted.
After 6 long weeks, Lola was finally discharged from
Southampton General Hospital yesterday. The final
X-ray showed a clear chest cavity, free from the fluid
that had been keeping her in hospital following the
operation 6 weeks ago. Here are a couple of photos
from Mary's Facebook.
Lola
gets the news. "Yipee. I am going home today!"
And
here I am to prove it. In my Daddy's car
Saturday
August 14
George phoned this
morning to say he Lola had an excellent night's sleep
in an empty ward! No wonder after all the activity
yesterday.
Jean and I visited the
hospital this afternoon. Lola was screaming the
hospital down when we arrived. She was having the
dressing changed on her chest, though she stopped as
soon as the nurse finished and said it was just a
tickle! What a girl. George's brother Richard was also
visiting and they went off for an hour while we looked
after Lola. She was in fine mettle, driving her car
along the corridor and getting us to pull her in the
cart. But she knows when to stop and have a rest on
the bed.
What
fun being pushed around in a cart!
The
only view of the outside world from the Ocean
Ward
What
sweet to have is such a difficult decision
Ocean
Ward is always deserted at the weekend
Lola
and her Grandma enjoying a show on CBeebies
Friday
August 13
The news gets better!
Following a positive
X-ray showing no fluid in her chest, Lola had a small
operation to remove the drain on Thursday Aug 12.
George said Lola had recovered well and was fine and
hungry! But she is still on the no fat diet for
another two weeks, which she is finding very boring.
Mary is away at the Vintage Show at Goodwood, so
George is on his own.
- Jean and I went to
see Lola this afternoon. As shown in the following
photos Lola was in good form and almost back to her
'sparky' self. George actually took her for a walk
outside the hospital this morning and had some photos
to prove it! She also walked to and from the playroom
while we were there, playing with toys and paints,
etc. 'I want to go home, now' she demanded, as all the
other children in her ward went. Not yet, but surely
it cannot be too long.
Lola
showing Nurse Jo the photo of the whole family taken
at Easter this year
"Bet
you did not expect to see me walking, Papa!"
"Grandma,
what would you like to buy from my shop?"
"Now
I am going to be a dentist"
"Can
you catch me, Grandma?"
Lola
showing her artistic flair, just like her Mum.
Lola
and Grandma enjoying the meringues that Dev
made
Wednesday
August 11
Jean and I visited
Lola in hospital this morning. Lola was bright and
perky, despite the drainage tube hanging from her
side. It was good to see her looking so well. Jean
brought in Lola's new school skirt and sewed some
buttons on for her. We also brought her some Das clay
which Mary will use with her later. George spent the
night at home in Kingston and brought her beans from
the garden. She had a bath, which she thoroughly
enjoyed. How relaxing.
Late News: Mary phoned
with excellent news that the tube may be removed
tomorrow if the X-rays show no build up of fluid. But
Mary is understandably cautious as this has happened
before and the tube had to be put back. Mary is going
back to Lewes tonight to prepare for the Goodwood
Vintage Show.
"Hallo,
Grandma and Papa"
Jean
sewing button on Lola's school skirt
"Do I
look like a bean monster?"
Lola
really does love her bath time
Friday
August 6
Jean and I visited
Lola this afternoon. Last time we saw her on Tuesday
she was up and about and making good progress,
following the removal of the drainage tube from her
side last Saturday. Would she be home soon, we
wondered?
However, X-rays had
shown a build up of fluid in her chest cavity, so poor
little Lola had to have yet another operation
yesterday to replace the tube.
So she was still
recovering and was in bed all the time we were there
today, but was in good spirits, lively and playful, as
the following photos show. We left with a bag full of
washing.
Lola
enjoyed playing with the train with Grandma
Papa,
do you know what a Puff Fish looks like?
How's
that for a funny face!
Lola
tending to her golden locks
Lola
having a story with Grandma
Lola
in sleepy mood
George
keeping the records!
Lola
enjoying a lolly while watching TV
Tuesday
August 3
Jean and I visited
Lola in Southampton General Hospital this afternoon.
The change in Lola was dramatic from the last time I
saw her. She was looking really good, bright, alert
and typically sparky. She walked to the playroom and
to the toilet while we were there and drove the
hospital car. Lola's teacher at her new school in
Kingston sent a lovely card with photos of all the
children in her class. The bandage on her arm covers a
cannula for taking blood samples.
Lola
loves driving her car along the hospital
corridors
Lola
showing Papa her friends at her new school
Lola
going for a little walk along the corridor with her
Mum
Lola
working on her new pink computer in the
playroom
George
making Lola some 'burnt toast' in the Ocean Ward
kitchen
Lola
with her Mum and Grandma looking at family
photos
Sunday
August 1
Jean, Danny and Lisa
went over to Southampton this morning to visit Lola in
hospital. As you can see from the following photos,
the drainage tube has been removed from Lola's side;
this was done in a small operation yesterday. This
meant she could wear the pretty nightdress that Jean
gave her. The transformation was amazing, with Lola
bright and alert and chatting away, almost as normal.
She not only walked to the playroom, but also to the
X-ray department which is another floor. Lola is still
has the cannula on her right arm and is on the low fat
diet. There is a long way to go, but things are
definitely looking brighter. Lola's prospective school
teacher sent her a book with photos of all the
children who will be in her class when she starts
school in September.
Lola
playing with the farm animals with Lisa and looking
suprised at something
Lola
posing for the camera!
Lola
enjoying the lolly that Lisa brought for her. Note the
green book from Lola's school teacher
Lisa
trying out the balls outside the hospital with Jean
Wednesday
July 28
Jean and I went over
to see Lola in Southampton General Hospital this
morning. Amazingly, there was no queue for the car
park! Quite unpredictable.
Lola had a small
operation yesterday to replace the drainage tube that
had become blocked. The surgeon also put a new cannula
in her right arm, in addition to the one in her left
foot. Naturally, Lola was still recovering from the
op. and was not her usual ebullient self, but she was
bright and alert. I recall Lola telling her dad that
she would like to go on a plane to Spain, to go to the
shops! There followed a discussion of Spanish sweet
shops! No doubt very good they are too. The parcels
that Mary ordered from Amazon which we took over were
a major source of interest both for Lola and George as
shown in the photos.
George
with the 'Peter Pan' DVD that Mary ordered from
Amazon
Can
I open it and have it on please?
We
all know what George will be watching for the next
year or so.
Mary
also got George a book about ducks to help with the
Kingston brood
Lola
nibbling her favourite spaghetti while watching
'Thunderbirds'!!
Sunday
July 24
Here are a few photos
from today's visit to the hospital to see Lola. She
was in fine spirits as you can see. She is back on the
0.2 fat diet which allows some nourishing foods
including carrots, peas, spaghetti and prawns (not to
her taste) and chocolate cake!
Lola
the carrot girl
Jean
made a special low fat chocolate cake for Lola. Is
that all for me, Mum?
We
all tuck into Jean's cake and good it was too!
Lola
having fun with Nurse Anna
Lola
inspects her new owl school bag
Lola
enjoying her spaghetti
Saturday
July 24
I went over to
Southampton General Hospital on my own this morning,
as Jean was due to go to a quilting show with her
friend Caroline, who is staying with us for a couple
of days. The hospital was deserted, few cars in the
car park and few people in the hospital. Amazing,
compared with the weekdays. My first sight of Lola was
seeing her walking back from the playroom with her
Dad, the first time I have seen her walk since the
operation. She was bright and perky with a lovely
smile on her face. Lola still has the tube in her
chest draining fluid, with George logging the measures
regularly, just in case it got blocked again. Lola and
I played with the Gruffalo snap cards that Jean sent
her. The she had dinner, chicken and potatoes with
tomato sauce. She and her Mum then tucked into the
dried apricots that I brought in, they are high in
potassium.
Lola
smiles for the camera
Lola
with her hair clips and ribbon
I
get into the picture for a change! Thanks, Mez.
Now,
Papa, you have to turn over one card at a time
Thursday July 22
Jean and I visited
Lola this morning. Lola was in fine form, despite
having some nasty things done to her. Mary and George
are absolutely brilliant. Jean had a bag of washing
for them. The car park is a nightmare during the week,
but apparently OK at weekends. Huge queue for car park
this morning. I dropped Jean off at the entrance and
parked on the road. I have also parked in the cemetery
with no problem.
Lola was surrounded by
people when I got there. She was having cream on her
arm in preparation for a cannula. She is on a new
drug, though the tablet she had to take was enormous
and she could not swallow it. Thankfully, the strict
no fat diet has been relaxed to 0.2 fat in 100gms. So
Lola can now have more varied and nourishing food.
However, she still has the tube attached to her chest
draining fluid.
Despite all the
unpleasant things being done to her, Lola was
amazingly bright and cheerful. She played with the
bubbles for a while, then Mary and George took her
into the playroom on the portable commode. She would
not walk. In the playroom, Lola planted some sprouting
seeds and then made a picture.
Nurses
preparing Lola's arm for a cannula
Jean
trying (unsuccessfully) to get Lola to have her
tablet
Lola
playing with the bubbles. Note the blow-up duck that
walks!
Lola
and Jean playing a nose kissing game
Off
to the playroom on the portable commode
Lola
planting some sprouting seeds. Let's hope she is out
of hospital before they come up!
Lola
creating a picture with stick-on-shapes in the
playroom
Tuesday
July 20
Jean and I visited the
hospital on Monday July 20, almost 2 weeks after the
operation. As you can see from the photos Lola is
improving with a better colour and generally more
lively. However, she still has the tube in her chest
draining the lymphatic system and is on a very strict
no fat diet, which makes the choice of foods
difficult. Mary said the fluid was less today which
was good news.
Lola
dancing in time with the DVD on the TV screen
Lola
with lollypops (which she is allowed) and various
other presents
Lunch
time with a plate of boiled potatoes, broccoli and
cucumber. Her favourite carrot was to come.
Lola
taking her medicine very nicely
Lola
and Mum longing to be home
July
13
Jean and I went over
to Southampton to take Mary and George's washing back.
We were delighted to find Lola out of bed and in the
playroom, though still attached to her lymphatic
drainage tubes. She was bright and alert, though she
got tired quickly and wanted to return to bed. But
what an improvement. They were moving her again up to
Dolphin ward where Mary can sleep right next to her.
Lola
playing with a box of tiny marsh mallows that Jean
brought in for her
Lola
returning to her ward from the playroom guided by her
favourite nurse Mike
July
12
Jean and I went to see
Lola in hospital today. The chylothorax seems not so
serious as we first thought. The hospital are geared
up to deal with it and actually have a leaflet about
chyle leaks. This requires a fat free diet for 6 weeks
to allow the damaged lymph system to heal up. A long
haul.
Lola
looking at some family photos
E1 is a busy ward with
things going on all the time. George and Mary have
been with Lola all the time and have been quite
marvellous. Mary stays in the hospital at night while
George has a room in the house across the road, where
he stayed when Lola was in hospital last time. We had
a phone call from Mary later to say Lola had chips and
beans, with chips done in special no fat oil. And she
did her first poo since coming into hospital.
July
9
Mary phoned a couple
of times to put us in the picture. Lola was moved up
to E1 the high dependency ward. She was alert and
asked if the baby ducks had been born at home. She had
started to eat, though had been sick. Then it was
discovered she had a condition called chylothorax,
which is caused by damage to the lymphatic system
during the surgery. It means she is unable to digest
any fatty substance which can be serious if allowed to
build up in the chest cavity. So she is on a strict no
fat diet for at least 6 weeks. Otherwise she is bright
and relatively cheerful and wants to go home!
July
8
Jean and I went to
visit Lola the day after the operation. Lola was in
the intensive care unit on a bed surrounded by tubes
and monitors. We were delighted at how well she
looked. She opened her eyes while we were there and
asked Mary for cold milk.
Lola
on the day after her Fontan operation
