Today is the start of Feeding Tube Awareness Week. Five years ago my Granddaughter had an operation that would save her life, she had a Gastrostomy operation and Mic-key button fitted to enable her to be fed through a tube directly into her stomach. This blog was written at the time.
On Monday (19th March 2012) I found myself feeling rather apprehensive when getting ready to go to my Daughter’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 my Daughter 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 my Daughter.
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.
Five years on and Jess is still very much reliant upon her feeding tube. She will take some food orally but not enough to keep her alive. We no longer have to use gravity to get the milk into her during the day. Now she has a pump that fits nicely into a backpack with the bottle of special milk. She quite happilly wears the backpack which enables her to be able to move around whilst her milk is being given to her. Once in bed and asleep she is fed with the aid of the pump throughout the night at a slow rate. The milk which is in a much larger bottle for the night feed hangs on a stand with the pump attached and tubing and this is kept on a table by her bed.
Now she is older and far more active, Jess’s milk has been changed to one with more calories. She is gaining weight slowly all of the time and is no longer at the bottom of the centile chart but more where she should be for her height and age. We are so used to this procedure now, it is part of Jess. I am no longer apprehensive and just grateful that this procedure is available.
For more information regarding tube feeding visit http://www.feedingtubeawareness.org/
© 2017 by Anne Hawkes & published by SNUG (Special Needs United Grandparents). All Rights Reserved