Beautiful Thursday morning where I overslept and missed my early morning workout. I was off campus in the afternoon for a meeting at Amarillo College and was able to pick Libby up little earlier than normal. (I’m always excited if I can get her early.)
At 4:40 we arrived at the house and since it’s a Thursday I got her into the shower and prepared her for the poop assistance she gets on a very regulated schedule.
Bathing Libby sucks. It just does. It has for years. A good shower means that she will only cry a little and be mostly compliant- a conscientious objector limp limbs and all. A bad shower means snot and drool induced wailing to the decibel that I am sure will one day get authorities called in. This day she was medium level crying. I’ll take that.
Showers are important not only to get her grownup smells taken care of, but also because I need this time to get an overall inventory of her body and note the changes.
Usually I can get her showered, onto her potty chair, mostly dried off and at least a shirt on before the poop fest ensues. This also gives me a chance to change the dressing and tape around her feeding tube. I leave the tube covered and taped while showering. This was not usual.
As I started changing the dressing I noticed a lot of extra ooziness. A lot. Then I realized that there was a lump under her tape. It was the balloon that’s supposed to keep the dang tube inside of her precious belly.
Her tube was out- AGAIN. I don’t know if taking the tape off hurt more or she felt her belly, but now she is ugly crying, and it is a blood and belly ooze palooza.
She doesn’t stay safely on her potty chair by herself for very long. I tried to cover the belly hole a little and put a gait belt on her. Then I ran into the kitchen and got out the emergency “tool” box. Grabbed extra gauze, peroxide since there wasn’t any rubbing alcohol, and a straight pin. I washed off the tube and pin with hot water, peroxide and lots more water.
I ran back into the bathroom where she has continued her show stopping aria- rightly so. The ooze palooza had abated a bit and I get the belly hole cleaned up a bit. Then I squish the feeding tube’s balloon, pop it with the pin, squish it some more and try to guide the tube back into its tunnel into my kid’s stomach. (I didn’t have the right syringe to deflate the tube’s balloon.)
It took several tries, and Libby was not best pleased. I used my left arm to hold her left arm and torso back while I eventually got the feeding tube back. It- went- back- in. Pulled a bra on her, a shirt and grabbed a feeding syringe to see if we are in luck. Amazingly, her tube flushed perfectly. No extra fluids squirted out, and the tube stayed in! I taped the bejesus out that tube entry point and tried to get pre-scheduled poop out of the way. Seriously laughed out loud. After the pooping she calmed down.
Right at 5:00 I had started making the necessary phone calls to her primary care doctor, then her surgeon and then the appropriate ER. Primary care doctor said to take her in after calling the surgeon.
I fed her the solid food dinner that we put into the oven when we got home between getting her fully dressed, packing up pills, my school bag, change of clothes for her and her feed supplies. We were loaded into the van. Then Grandma Linda and Jennifer showed up. Jennifer was bringing the kids to Happy for the the weekend and Linda was coming over to help out for the evening. I tried to explain what was happening and we hit the highway. We were fifteen minutes north of Happy when the surgeon called back.
He was happy that I got the tube back in and that it flushed successfully. As long as it works and there are no issues we didn’t have to go to the ER. Awesome. We turned around and headed home.
We were home by 5:30, and I had a little cleaning to get done. Rachael swims on Thursday evening and gets home around 7:00. I’m glad she missed the palooza part of our afternoon. I filled her in while she was on her way home.
I’m grateful the tube went back in and has been behaving thus far. We are two days away from this spectacular happening, and it still cracks me up.
The moral for me is to not over sleep. But seriously, Libby’s belly could have its own sitcom.
Libby is still dropping weight, but not as fast. She’s getting around 1000 calories a day just through her tube. We try to get her to eat as much real food as possible. So the tube saga continues on. She needs the nutrition and fluids the tube gives her. I will need to make a surgical appointment at some point to get a new tube in. I hope we can wait awhile and let her belly hole get over it’s recent aggravation. We got lucky this time. Nah, we’re continually blessed.
Love to all.
