12.22.17 Wound VAC34

Crazy day around here. More discussions with the primary team. We were really feeling unsettled. While we wanted to get home, it still didn’t feel like Aimee was in a good place. But, we were hopeful that some resolution would be achieved through the last specialist consult. It just so happened that the consult we needed was with a motility specialist from GI and we just so happened to have already had an outpatient appointment scheduled today with the very best motility specialist in this hospital. She made it over to Aimee’s room this afternoon and left us in a much better state to head home. Essentially, she confirmed our feelings, gave us details where there had been none, and set up a positive plan. Instead of the depressed hopeless feeling after the care conference, we felt justified and equipped. 

One area we were particularly concerned about and that we kept mentioning to the team was that her vomit had food in it. They brushed it off and brushed off that she was still distressed. Basically told us to power through. We were bummed and uncomfortable feeling that Aimee was telling us something wasn’t right. Dr A, our GI doctor, listened to our comments and immediately ordered a follow up x-ray. 

When the G/J tube was placed, the imaging confirmed it was in the jejunum. The follow-up x-ray tonight showed that the tube had looped back around and the end was in the space between the stomach and the intestines (pyloris). One of her vomiting episodes that night had displaced the tube. They were able to fit her into the IR schedule to have it replaced with a longer tube to hopefully prevent a repeat. We were also informed by the radiologist that, just like we thought, if we vent her stomach and see food or she vomits food, the j-tube is in the wrong place. 

The GI specialist confirmed our suspicions that the team was increasing Aimee’s rate too quickly as well. We will need to increase her farther to get her up to fluid goal, but have now been instructed to only increase by 5 mls every 3 days (the team was increasing every 6 hours!!). We will also continue to vent her stomach with any signs of distress, were given new cecostomy concoctions, and were given an increase of motility medication. With all of this, Aimee should not be in a continually distressed/vomiting state. It is still a big changes in many ways for us to sort out at home. However, it is much more hopeful knowing that we don’t have to accept her discomfort as normal, but now have tools to help her. 

The PICC line was finally removed tonight at 9. So, as long as we have a stable night tonight, the wound VAC machine will be switched in the morning and we will finally be discharged!