Jamey hasn’t felt the greatest the last few days. The last two days he hasn’t really gotten out of bed. As I mentioned in the last post, he met with doctor and team on Monday. They made some changes to his meds and dialysis prescription (due to the uremia and swelling). He had been having some pretty bad headaches and some nausea. We assumed this was due to the uremia (toxins in his blood). Unfortunately, he has gotten a bit worse instead of better. He has lost a significant amount of weight in the last week. Some of this was to be expected as we were trying to get the fluid that he was retaining off. They would like him to stay right around 228. He had climbed to 240 and is now down to about 220. The fluid is off (we can see his ankle bones again) – but now because of the nausea he isn’t eating too much. Without food it is difficult to handle the meds. Without the meds his body can’t regulate his blood pressure. Endless circle.
On Wednesday night I decided to use a drain bag to collect the used dialysate. We learned how to examine the dialysate in training to help determine if he might have Peritonitis (an infection in her peritoneal cavity). The fluid looked really good/normal to me. We decided to call back to the doctor on Thursday morning to let them know he was still struggling. Again, I’d like to say how great his team is. I had a call back in less than 10 minutes. I was prepared for the call with his temperature, blood pressure, weight, and pulse. Once they heard his stats they were also concerned about peritonitis – but thought it could also just be a regular virus running through him. They asked me to call back after lunch with his stats again. I did. They decided they needed to see him immediately. Unfortunately there were no doctors at the closest dialysis centers. Soooo, we had to drive downtown. Also, unfortunately, we had several things planned for the exact hour they asked us to leave the house. Hannah had her Spring Concert at school. Abby had riding. And Brooke, Nick, and Summer needed picked up from the airport. GAH! Now they wanted us to drive an hour away from the house (it was rush hour) with a nauseous Jamey so they could take a look at him.
Thankfully, Gary had called in the morning to say he could help today if things got sticky. Well they got sticky fast! Jamey and I left the house and dropped the riding bag at school for Abby. The office staff was LOVELY helping me tell them everything I was trying to get out. They needed to know who the bag was for, who was picking up Abby, who was picking up Hannah… Anyway, I was in a rush trying to get out of the school so I could get downtown in a decent amount of time.
Gary came to the school to get Abby. Laurie met him there and the three of them watched HB do her concert. Then Laurie left with Abby for riding and Gary brought Hannah back to the house. We arranged to have a driver get Brooke, Nick, and Summer. And I was driving Jamey (who was getting sick in the seat beside me). Stomach of steel right here!! Whew!
Anyway, the team that met us was a new team. They were a part of Denver Nephrology – just not our regular people. They were fantastic. They listed to everything and treated us extremely well. They checked the drain bag of dialysate and also his catheter exit site. They agreed that it didn’t appear to be peritonitis – but still sent a culture off just in case. His temp is staying between 99.5 and 100.7. We were advised to head to the ER if it breaks 101. We were also advised to keep using a drain bag so we can inspect the used dialysate.
So now we wait. Jamey is feeling the most nauseous today. We are hoping this is just a bug that is working its way through. We are focused on trying to keep him hydrated. I’ll update again when we know more. Please pray that this is just a virus and not something bigger. We will be updated on the dialysate culture as the tests come back.