Friday, January 27, 2012

What a wonderful vacation

I have been back from Portugal for a couple of days now, and it is hard to believe that after a week in short sleeves and light pants I am back to wearing turtle necks, a winter coat, scarve, cap, and gloves.

I had a wonderful time. I was able to relax and just be. I only had access to the internet a few times, and I had totally forgotten how good it feels not to be online that much. I did lots of reading and sleeping and simply enjoying sitting out in the sunshine. I even got a hint of a tan ;-).




Travelling went well from a tube feeding viewpoint - no troubles at security or during the flights both times.

I had a very creative set up in my bedroom for my nighttime feeds. Usually at home I use my IV pole for that, but this is what I did in Portugal:

My trusty travelling tube feeding hook ;-).... works well on the backs of chairs as well....

 

6 comments:

Stephanie said...

Sounds like a great trip and love the feeding advice! I recently went to Mexico and found a hook on the wall right behind the bed post, perfect gravity.
Your stories are inspiring, thanks :)
Stephanie

Tube Girl said...

Hi Stephanie!
I am glad you got to go on vacation too! Nothing can keep us tube girls back, right?
Julia

Stephanie said...

That's right, nothing can get in our way! I felt pretty empowered after traveling and realizing how much life still has to offer.
Question if you don't mind...how much food do you take in during the day in addition to tube feeds and do your doctors expect you will keep the tube long-term?
Stephanie :)

Tube Girl said...

I get all my nutrition through the tube, and I eat orally purely for pleasure, but it doesn't count towards my energy intake. Besides gastroparesis I have protein malabsorption (and other malabsorption issues), so basically I need my pre-digested tube feed to be healthy. I think I would be able to eat a bit more orally if I didn't tube feed as much, but I know it wouldn't be good for me. My doctors have no idea if it will improve, but I refuse to give up hope and I always try to challenge my body with oral foods.

Stephanie said...

That's great that you continue to challenge your body. You never know what can happen. I currently get half of my calories through the tube and doing my best to work my way down. Some days are better than others but like you said, never give up..

Maddie said...

That is amazing! My baby sister has a tube. She not been able to suck or swallow since birth and it has been one os my constant worries about what her future will be like. Two days she had emergency surgery to get PEG-J tube (i think) put in. She is 13 months, and I know I have years to worry about it but it is amazing to see someone so proud to have a tube- proud enough to show the world. Well done! xx