Adeno...What?

Sorry for the delayed update. Things were going well with Evan and we were getting ready to go over all discharge directions and head to Ronald McDonald House...that is until Monday when we found out that Evan's cultures from Friday showed adenovirus in his blood. What exactly is adenovirus? Well, it's just a virus really. Much like any other virus it causes colds, flu like symptoms, fevers, sore throats...in normal people that is. Of course, as will any illness, it can be much worse and can cause many other issues in immune compromised people (like Evan). Because of Evan's positive test, the docs wanted to begin treatment right away so that his body could get rid of the virus. They started first with IVIG. (Intravenous immunoglobulin) This is to help increase the effectiveness of Evan's immune system. Unfortunately, after one treatment his levels of the virus increased instead of decreased. This baffled all the doctors and nurses since clinically, Evan was presenting great. He has been getting happier, more active, and more playful every day (since his fevers stopped last week). The Physician's Assistant said when she saw the results she kept thinking there had to be a mistake and even called to make sure it was correct. Either way, the fact that Evan is presenting well is a really great sign. Since the IVIG didn't seem to work for Evan, the team decided the best treatment would be cidafovir. If you look it up on the internet, cidofovir can have some really serious side effects on the kidneys. Because of this, there is additional treatment that goes along with administering cidofovir that helps to prevent this damage to the kidneys. Evan is responding well and his kidney functions are awesome with the preventative meds. His liver functions are also GREAT and the docs are really pleased with how his liver is doing.  The plan at this point is to continue with the cidofovir therapy to reduce and eliminate the virus. The docs are hoping for Evan to only do a couple of more inpatient therapies (every 48 hours) and then he will continue them outpatient until the virus is completely gone. So far so good! Hopefully not too much longer til we can get him out of the hospital and staying with us.

On that note...we had to move out of Ronald McDonald House :(  Because many of the children staying at RMH are also immune compromised, Evan cannot go there until he has ZERO virus in him. We are sad to be leaving the support system we have created there. We have met some wonderful people who completely understand how we feel and what we are going through. On the other hand, we are excited to get to some sort of "normal" instead of being in the hospital all day every day. We found a very nice furnished one bedroom corporate apartment not too far away and rented a car (15 minute drive). The apartment will be more comfortable for the three of us and it will be nice to have our own space. We will most likely be there for another several weeks if not longer since Evan will need to continue to go to Liver Clinic to have his numbers checked and his medications adjusted. He will also most likely need to continue with the Cidofovir treatments as well since it takes time to completely rid a body of a virus.

For those of you who have sent things to RMH, we will be stopping by there a few times to check on mail and they also know to call us. As soon as I have a good mailing address for the apartment I will send it out to everyone. Thank you to everyone for the continued support! Much love to you all!