Unfortunately, Xander had an Acute Kidney Injury, AKI, happen at the end of 2020, due to a new dietitian removing a large amount of the free water from his diet because she said we were giving him to much and he didn’t need it. This caused him to slowly dehydrate over the next several months, ending up in the hospital in January of 2021.
With the way his kidneys filter water, he did not show the usual signs of dehydration. Knowing that something just didn’t feel right Jesse and I rushed him to the ER. It was there that they discovered his blood sodium level was at 195. 135-145 is normal. Over 170 is considered fatal. We were told that they needed to get him to OHSU ASAP. We were experiencing bad weather that night as we normally do at the end of January on the Oregon Coast. This made it impossible for them to get the PANDA life flight team in from Portland as it was not safe to land. They then tried our local ambulance service to transport us and they were short staffed so that was a no. We were lucky to get an ambulance service from Myrtle Point, 45 minutes away, to transport us. So Xander and I loaded into the ambulance and started the 4 hour trip to OHSU, where Jesse would meet us the next day after his long drive. The ambulance driver completed the trip at 3 am and did it in a little over 2 hours.
Once we were in our room in the PICU I was able to talk to the doctors. The news was not good. I was informed that only one of these very skilled PICU doctors had ever seen a sodium level that high and the outcome for that patient was that they did not survive. We were given a 25% of survival and of that a 10% chance of complete brain damage. On top of all the other odds stacked against Xander, his kidneys did not filter at a normal rate so dropping his sodium level at a steady rate just became a whole lot more difficult.
On day 2 we had a scare when Xander finally came around but was showing no signs of knowing who we were and was just staring off into space. They ran some tests to determine brain function as well as slowed the rate of dropping the sodium level and he started to come around after a couple of hours. No brain damage so far.
On day 4 he contracted MRSA in his blood and became septic. The antibiotics they gave him for that were blowing through IV sites left and right. He had 6 IVs in day 4-7 and then they ran out of veins to use. They attempted a EJ line in the middle of the night on day 7 through the exterior jugular in his neck but it was unsuccessful. They were then able to get a new Temp IV line in after that but knew it wouldn’t last. A PIC line is not an option as he would one day need a transplant so they have to keep those veins untouched. The only option left was an IJ, Inter Jugular, line in his neck, which requires a sedated procedure. So on day 8, 3 hours after he went back for that, we were told that it was successful and that it would last the remainder of his stay.
Later that day he was transferred out of the PICU and onto the Ped’s floor now that he had a stable line and his sodium was below the fatal 170 mark. The next week and a half were even more of a blur as we had small things come up here and there. But his sodium level continued to come down and the antibiotics seemed to be working on the MRSA infection. Our Xander slowly became more like himself and was safe from the possibility of brain damage. His kidney numbers were slowly improving, however we know that the AKI from the dehydration had caused permanent damage to his kidneys and that a transplant would be needed in the next 2 years most likely.
We were able to leave the hospital 3 weeks after that ambulance ride up, with a new feeding schedule and amount, a feeding pump and the knowledge that we would now be doing blood draws way more frequently as we anticipated needing that transplant.
The middle of February will be 3 years since that hospital stay and we are sitting patiently waiting for the lifesaving kidney to be available.