It has been an adventurous week with lots of news, but very little of it is momentous. Just to set your expectations. 😉
To start, I ventured out to get my bloodwork on Tuesday. I walked a mile roundtrip and I came back tired, but not wiped out. This is a serious accomplishment. But my legs weren’t happy with me afterwards. Which pissed me off, because as a native New Yorker, I have, until now, had the ability to go from couch to walking 6+miles without skipping a beat. On the other hand, it did help me realize that I now have enough nutrition to start walking regularly again. Which I started today by walking around the block (.4 miles).
After a couple of weeks of a clear tube, I started seeing tiny amounts of blood in it again. I knew it was not something that would impact my hemoglobin* and that I had an appointment with my GI who put in the tube, so hopefully I could get some answers. Then, Monday night, I was woken by a very sharp pain in my stomach where the inside bumper that keeps the tube from falling is located. Fortunately, my appointment was Tuesday afternoon.
The GI seemed completely uninterested in my bleeds, but I convinced him to take a look when he changed my tube to the kind he likes better. This was a swap that he recommended to me when I got my current tube inserted. This style works great for the initial tube until the stoma heals and the stomach has formed a good adhesion to the abdominal wall. After that has happened (at about 6 weeks) he prefers to switch to the other kind of tube for the longer term. The swap is scheduled for February 13th. We can call it a late birthday gift.
To recap: My current tube is a tube within a tube. The outer tube stays in my stomach so that I can vent air and stomach contents, and then the smaller inside tube goes to my jejunum for my feeds. The better kind of tube has two tubes that are side by side. It also has a soft balloon rather than a hard bumper on the inside. Which, if the bleeds are caused by the bumper rubbing against the stomach wall, a soft balloon would address on its own.
In other news, the backpack I received from the supply company that holds my pump and my feeds is disintegrating after just a couple of months of light use. This backpack is what allows me mobility for the 18+ hours a day that I feed. So it does get a bit of wear and tear. But has only been used outside the house 5 times. There are folks that haul these things to work, to pick up kids and to run errands, so comparatively, mine really has only seen light use.
Anyway, there are a bunch of crafters on Etsy who modify basically any backpack for tube feeding. It mostly involves adding grommets for tubes and adding something to hold the feed bags, sometimes something as simple as a carabiner. Unfortunately for me, most of those backpacks are designed for a different, much smaller pump than I have. It is the standard pump for kids and a lot of these backpacks are kid oriented. Which makes me absolutely want them (there were a couple of awesome dinosaur ones!), but alas, it is not to be.
I had some very specific modifications in mind and the woman who had experience with Kangaroo pumps happened to be in the UK. I discussed the changes with the crafter and she was happy to make the modifications for no additional charge. And its not like she is making big bucks. This modified backpack ran me all of $75. Which is why I am taking this moment to appreciate all of the creative problem solvers in the tubie community who share their imaginative solutions at extremely reasonable prices. It really is a very generous community.
Anyway, I have been eagerly watching the tracking information on my new backpack as it managed to get checked in 4 consecutive days in the UK without apparently moving an inch. But it has finally reached the US and cleared customs in New Jersey today! As you can see, I lead a very exciting life! 😆
*My bloodwork has confirmed that my hemoglobin is at a very good level.