A NEW SKILL FOR MY C.V.

OPERATION- GASTROSTOMY

On Monday (19^th 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 12^th 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.

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.

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.

 

This post is written as part of the bloghop #definenormal. Click here to find out to find out more

DEFINING NORMAL

I agreed to take part in a blogging challenge this week but nearly didn’t participate when the challenge was the above topic.  The brief was to blog about what is normal in your household due to having a child with a disability.  Difficult for me as I write from the point of view of having a Granddaughter with different needs.  I help care for her so I could write about my routine with her which would be unique and normal for me now, but then after giving this considerable thought I came to the conclusion that was not going to keep anyone interested for very long, but I do have opinions about the whole concept of ‘normal’ when used to describe people.

According to the dictionary the meaning of normal is:

“Conforming with, adhering to, or constituting a norm, standard, pattern, level, or type; typical:”

So therein lies my problem – What is a normal person?    If a certain make of car is tested thoroughly and found to veer slightly to the left when being driven at 70mph then it would be fair to say that that is normal behaviour for that make of car.  But how can you equate that to a human being?   If our individuality is taken away and we are made to think the same and act and look the same then we cease to become part of the human race.  It is our individuality, our uniqueness, our lack of ‘normal’ that makes us who we are. 

The same can be said of the person with a disability.  They are still people in their own right they still have needs (some different perhaps) and feelings like everyone else.  We all form part of the wheel of life and the uniqueness of each individual is what keeps the wheel balanced and turning.  Having said that, I really do believe there is a danger sometimes of becoming so absorbed in wanting such people to be treated as equals in society that we may sometimes unwittingly do more harm than good.

Do you remember the ‘swat’ at school – you may even have been that person!  If you were the chances are you had a rather lonely and perhaps sheltered childhood.  You see the school swat was different from the rest of the class (the normal ones), he handed in his homework on time, he got good grades and because of this he was always being talked about and praised by the teachers.  The teachers were proud of this person, they wanted everyone to realise this and kept pointing this out at every opportunity, but the ‘normal’ children did not like the school swat because he was made out to be different from them. 

I think that the word normal should be deleted from our language it could save us a lot of problems!

I am writing this post as part of the Define Normal blog challenge  http://www.justbringthechocolate.com/define-normal/normal-family-life-at-my-place/ )