We are definitely battling with the feeding tube on a daily basis. But, what’s new? I was sitting here pondering on how long it has been that I learned how to work with feeding tubes and I have to say that I am a genius! haha. It has been 18 years. What is up with that? I should have a medical degree of some sort by now. Don’t you agree?
Each year that comes around, during the first week of February, we celebrate feeding tube awareness. Within the L1cam Syndrome, you have many conditions that have their own awareness. I feel like we have a rainbow diagnosis. Full of so many ribbon colors. haha! Without a feeding tube, my son would not be here. He is on continuous twelve-hour feeds with a two-hour break in between because his body cannot tolerate regular feeds. The food would settle into his lungs and cause pneumonia leaving him to be in the hospital for days at a time. So, we are cautious and do our best in trying to stick to the plan we created for him. He seems to be doing good with it and we are so thankful that its working. Another thing we have to watch is the site itself. Sometimes there will be drainage and we have to be careful and watch for irritation or build up around the tube and that could mean he possibly has an infection and will need medicine’s to help with clearing it up. That rarely happens though if you stay on top of it and keep a watch on it.
Brent has an IV pole to put his pump on and I love how I have a clamp that hooks on the back of his wheelchair and I am able to put the pump on his chair without having to drag the IV pole around everywhere. So, if you are a feeding tube momma, then you know that’s a blessing to have that. I don’t know about you but, I need less complications in my life.
This week we are celebrating Brently. Celebrating for having a feeding tube that is his food supply and celebrating everyday the fact that he is a super hero striving to do his best with what God gave and provided him.
If you want to know more about Feeding Tubes and their awareness week, below is the link directly to the site.
Have a blessed day!