Today, I was glad I wore my tennis shoes. We did a lot of running through the hospital‘s tunnels and skyways to different appointments and tests! Since our appointments started at 8:00am, we drove down last night and stayed in a hotel! Easton still has that nasty virus plus double ear infection, so the night in the hotel wasn’t the best and 6am came very early. But we survived and braved the Minnesapolis rush hour traffic.
Or first appointment was with a new specialist who we have been trying to get into FOREVER. He is an infectious disease specialist and immunologist who does special research in CMV and lectures at the Universoty of Minnesota. He was a great resource and the appointmen was fantastic! We decided a lot of things.
First, we are going to start an antiviral medication for Easton’s CMV that is thought to help prevent further effects. This medication can be tough on the liver and kidneys, so we have to do regular labs. The side effects can be tough too, so we will see how they go!
We also decided that we are going to look into Easton’s immune system. Obviously, he gets sick ALOT. I also get sick a lot. The type of CMV I got sick with while pregnant was pneumonia CMV and that is pretty rare. So, we want to make sure Easton doesn’t have an immunodeficiency. That bloodwork will be done once he is no longer sick.
The last big thing that we discussed at this appointment was the possibility of participating in some research. Easton is a really good fit for a CMV study at the University of Minnesot. I really love the idea of participating in a study. CMV is a disease that can make you feel very helples, because there isn’t much you can do but wait. However, participating in a study would help us give back and potentially benefit someone in the future!
Easton had a lot of tests run today as well. First, we went to lab for a blood draw, which is always fun. Easton was a trooper and watched Moana through it. He also had a chest x ray done. He may have pneumoni, developed from his current illness. We should find out the result of that soon.
Easton also had an EEG done to moniter his brain activity and look for seizure activity. Particularly, absent seizures. We did a 90 min EEG. We should know the results of this in the next few days. However, at the end of the study, the do strobe lights to try and induce any seizure. Easton did have one of his “spells” soon after the lights. So, if it is seizure activity, we should know soon and be able to medicate for them!
Overall, it was a very successful trip! A big shout out to my Momma for hauling stuff across the hospital 1000 times with me 😊
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