It has been several days since the space between the bumpers on my tube were increased and all signs point to that having been the issue. I have not vented any blood since Saturday, and that was expected after the “adjustment.” But I remain in pain, although it is decreasing with time, and David and I both remain physically and emotionally exhausted.
There was a decision at my first visit to the ER made by my GI’s team on December 23rd not to do a tube adjustment. No one with experience with a G-J tube even bothered to come down and take a look at me. They just monitored my hemoglobin.
A week and several phone calls later, the nurse practitioner sent me back to the ER. This time my GI’s office started paying some attention. Several GI’s came downstairs to take a look at me. The first, presumably a resident, took one look at my tube and said that it was too tight. That was all it took. A single glance. He then proceeded to start pulling the tube through my stomach to give the outer bumper more space. If you are easily ooged out, just skip the next two paragraphs.
Some details about how the tube stays in place. There is an inflated balloon on the inside that keeps the tube from just falling out. The tube is also stabilized by adhesions that my body attached to it as part of the healing process. When he pulled that tube, it forced the balloon against my stomach and abdominal walls with a great deal of pressure. If you recall, my abdomen is incredibly sensitive to touch. That alone brought tears to my eyes.
But her wasn’t able to get the tube to budge by just pulling. He had to brace his hand against my abdomen and tug. Hard. Those adhesions were really strong and he had to rip them to get the tube to budge. He apologized for making me “uncomfortable” but it seemingly never occurred to him to use some lidocaine to make the experience less painful.
I was really glad that David was there to listen for me, because I still have no idea what he said afterwards. All I could do was breathe through the pain. A while later, another GI (presumably an attending because she had two interns following her around like baby ducklings) came down and took a look. She was clear that she was a general GI and not part of my doctor’s team, but even she commented that she would not want my tube to be any tighter than it was at that moment. She went back upstairs, conferred with my doctor’s team and that was when they decided to release me.
It has been a serious relief not to feel compelled to check my tube constantly for signs of blood and my anxiety levels have dropped considerably. But while I bounced back surprisingly quickly from my first ER visit, I really didn’t have the reserves to do it a second time. And I haven’t been able to increase my feeds from 51ml/hour to 52ml/hour because I just don’t have it in me. I was going to try to do it anyway, but David wisely talked me out of it. Better to stay put for a little longer than to have to drop back to 50ml/hour.
The nutritionist from the supply company ordered a sample case of the 1.5 peptide formula for me to try. This formula has a higher calorie per volume, so if I switch to this, I can bump up my nutrition without having to increase my pump speed. This is the same formula that the nutritionist in his office originally recommended for me, but he went with the lower calorie option instead. I am hoping to convince him to let me switch at our appointment on January 10th.
Because things can never be simple, Saturday morning Dancer started vomiting pink liquid. He was clearly uncomfortable and nauseated all day. Uncharacteristically, Dancer slept next to David and apparently was in such a deep sleep that David nudged him a few times to make sure that he was still breathing. This is particularly noteworthy because Dancer has a perpetually stuffed nose and usually snores.
The deep sleep seems to have done the trick. He was feeling noticeably better on Sunday by the time he was able to see the vet. They gave him a strong anti emetic and a few days Rx of med that coats his stomach (it was a med that I tried too, but it did nothing for me) and he seems to be doing fine.
They also put him on an Rx wet food for a few days. Of course Xena Malka wanted some, so David just bought her some Friskies so she can eat her own wet food while Dancer eats his. Unfortunately, our way too skinny Nom Nom has no interest in wet food. Well, unfortunately for us. Xena Malka is more than happy to not have to share with her brother.