OPERATION- GASTROSTOMY
On Monday (19th March) I found myself feeling
rather apprehensive when getting ready to go to Emma’s house that morning to
look after Jessica. This would be the
first time that I would be feeding Jess on my own after her gastrostomy
operation.
Exactly a week earlier on Monday 12th March
Jessica was admitted to Birmingham Children’s Hospital to have a
gastrostomy. This involves having to
fit a tube directly into her stomach with an attachment (button) that enables
her to be gravity fed (Bolas) through another tube. She originally had a Naso Gastric tube fitted (goes in through
her nose) but kept pulling the tube out sometimes within minutes of it being
fitted and so therefore was not getting her full quantity of the special milk
needed to keep her alive.
Jess has always had a problem with feeding, she would never
suck for very long from a bottle and this was one of the problems that alerted
her parents to the fact that something was wrong not long after she was
born. She was not feeding properly, was
starting to lose weight but at the same time was not screaming with hunger,
which you would have expected. This was
also a problem when Emma was trying to convince doctors that she was not just
an over anxious mother – they did not want to believe there was a problem as
Jess was not unhappy at all!
Although Jessica is now at the age where you would expect
her to be fully weaned, she will still only take very small amounts of solid
food so is not able to rely on that for her nutrition. It is hoped that one day she may take more
solids and then her milk feeds can be cut down until she is eventually weaned
off it, but there is also the possibility that due to her ‘condition’ she may
not be able to recognise or feel hunger and therefore would just slowly starve
if not assisted with feeding. So
although not ideal, we have come to terms with the fact that Jessica may always
need help in that way. Back to the
hospital …..
I joined two very anxious parents that Monday afternoon,
Jess had just been taken down to theatre and they had been told she should be
back on the ward in about 1.1/2 hrs.
Nearly 3 hrs later she was wheeled back in, we had been frantic with
worry but apparently all had gone well.
I stood back whilst Jessica was placed in her hospital cot by her Daddy,
it seemed only right that Mummy and Daddy should be the ones to see her first,
also I had to wipe away the tears which had slowly started to trickle down my
face! We need not have worried, within
a couple of hours Jessica was sitting up and playing with toys- the surgeon had
done a really neat job. The next day
she was discharged and I learnt how to feed through the button under the
supervision of Emma.
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| This is Jessica just two hours after being back on the ward! |
So this Monday was my big day. I started to get everything ready about ½ hr before her feed was
due just so I knew I had not forgotten anything. Once I had attached the special feeding tube to the button
everything would be as I was used to before as I had been bolas feeding her for
a while before she eventually went onto a night feeding pump, but it was the
thought of having to attach this tube to the button. The site was healing nicely but I was really scared of hurting
her but more than that if I am honest I was so scared of pulling this button
out of her stomach or dislodging it in some way, it seemed quite delicate. But I am glad to say my fears were
unfounded, with the help of laser lights to the ceiling I was able to distract
Jess from trying to pull the button out herself! I attached the feeding tube, carried her carefully over to her
high chair with the tube dangling and then attached the rest of the tubing for
the gravity feed. After the feed was
finished Jess was playing in her chair for 15 mins to let the milk settle in
her stomach and then it was a case of carefully lifting her back out, onto the
floor again and another ceiling light show whilst I took out the feeding
attachment and fitted the dust cap back onto the button. Success!
I felt so relieved that I did a little jig around the lounge which amused
Jess so much that she was in fits of giggles.
The neighbours by now are used to seeing this ‘mad woman’ doing strange
things in front of the window.
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| The 'button' |
 |
| With feeding tube attached |
Now I have done this a few times and it has started to
become second nature to me. Despite
having hardly missed an episode of casualty in all the years it has been
running, I am not a natural when it comes to anything ‘medical’. I faint at the sight of blood and have even
had to cover my eyes when watching certain scenes in Casualty and other medical
dramas and yet I know they are not real!
Emma takes after me in that respect I am afraid and yet since Jess has
been born she has learnt to cope with all sorts of things from having to hold
Jessica whilst blood is being taken and various tests have been done, to
learning how to fit N.G. tubes into Jessica’s nose so that she could replace
them quickly after Jess had pulled them out rather than wait for the district
nurses. I admire her such a lot for learning how to do that, I am not sure I could have coped with it. Jess’s Daddy has also had to
learn new skills and of course the two Nannies!
We are so lucky that this procedure is all that is
needed for Jess. There are so many families of children with different needs
that have had to overcome their fears and cope with things that they never dreamt
they would have to. I would like to dedicate this post to people everywhere who take on board various medical procedures and learn new skills so
that their children can survive. They
do not get paid for their skills but the smiles and love they receive from
their children are payment enough.
