Just breathe…
I’ve been saying this over and over to myself for quite sometime. Really since Olivia’s last surgery.
I keep waiting for the “it’s gonna get better, don’t you worry” days.
I’m tired of weekly, sometimes twice or more, appointments to the Children’s Outpatients Centre because yes, something else has gone wrong with the godforsaken g-tube! You know you’ve been a fixture there too long when the nurses know you by your first name and ask you about the family. I don’t even have to check Olivia in at reception anymore; they see us enter and automatically get Olivia’s charts ready.
Routine….oh how I miss you. When will you ever return? I long for the days when our lives felt stable and somewhat predictable. These days brought solice and happiness because they meant no emergency appointments, only routine check ups; conversations that didn’t revolve around “seepage”, “granulated tissue build up” and “tolerating feeding”; and neighbors visited our house more than nurses. I dream of those days!
It’ll get better they say…well you know what I say, I say they’re full of shite! We are going on month three and we haven’t turned that corner yet to signify we will ever see those better says ahead. Stay positive and remember tomorrow is a new day…Please don’t. I may throat punch the next person that says this to me.
For now I choose to drown my sorrows in mounds of left over Easter chocolate. Don’t judge, I’m sure y’all are stress eaters too!
Enjoy your chocolate ❤ Wish I was there to give you a relaxing night out … without any worries … just enjoying each others company ❤ HUGS ❤ Love you all
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How long has Oliver had his feeding tube? I’ve had mine for 9½ years and in my experience, seepage and membrane buildup is normal. I use to cover the site with a 4×4 Drain Sponge and tape it down. That process became a hassle with taking showers and cleaning so I started to just use a half size paper towel folded twice and tear a slit in the middle and place the paper towel next to the skin under the retainer ring,(for a lack of a better word) so it would soak up the seepage and keep the ring cleaner. The main thing through this whole process is to keep a positive attitude. Hopefully this is not forever and your lives can get back to normal. In the meantime, get use to a new routine every day. If you wish to know more of my experiences, please feel free to ask.
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Olivia’s gtube was put in about 3 months ago. Just as if recent, the granulated tissue has begun to clear. A family we know, whose daughter also gas a gtube, recommended we get a prescription for a steroid based spray. We did and it worked remarkably well.
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