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! 

College Acceptance

Most people don't pray for college acceptance for their kids until they are about 17 years old or so. However...we are pleased to announce that Evan has been accepted to Stanford University! Okay...so, he's not a student, but he's still been accepted!

Our trip to Lucile Packard Children's hospital at Stanford University was a huge success. Evan did great traveling and we met with the genetics and liver transplant teams. Dr Enns, the geneticist, fully believes that transplant is the way to go when it comes to classic MSUD. He really believes the benefits of transplant outweigh the risks of MSUD.  Especially since MSUD is completely unpredictable.

Our talks with the members of the transplant team were great as well. They were very thorough in helping us to understand the risks and benefits of transplant.  They are confident and knowledgeable all while being friendly and kind. Evan just absolutely fell in love with one of the surgeons. He just snuggled her for a good 20 minutes as we talked with one of the lead surgeons. Her tenderness was exactly what I needed to see to know that this team would take good care of Evan...not as just another patient, but as our baby! 

The transplant coordinator, Marcia, was fantastic. She answered questions and gave us more information than we anticipated. She is going to be our guide through the ins and outs of this process. She will make sure we get them everything they need and she will be the voice we hear on the other end of the phone when we get "The Call!" 

She called yesterday to let us know that the team had presented Evan and made a decision to approve him for transplant! There are still some things that need to be done before he is officially listed. He will need to have an ultrasound done as well as a few more blood tests. He will also be getting his MMR and Chicken pox immunizations on his 9 month birthday (December 19).  Once all of that is done and the insurance approves everything *FINGERS CROSSED* then Evan will be listed. 

Evan will be listed with a PELD score of 30 (40 being highest need). After 30 days with that score, he will be bumped up to Status 1B...which is the second highest category for need. The transplant team has said that once he reaches Status 1B they should get calls for available livers and once they decide a liver is the perfect match we will get "The Call". They don't anticipate the wait being longer than a few months as the longest wait they ever had for a similar situation was about 6 months.  So..for all practical purposes...Evan should have a new liver by the summer! :)

While we were in California, we stopped by the Ronald McDonald house and put our name on the list for housing need. We are really hoping to stay there as it is very close to the hospital, has all the accomodations we need, and because there will be other parents there who (although maybe not going through MSUD related stuff) will understand how we feel and what we are going through.

We have jumped a huge hurdle here with Evan's "college acceptance" and hope that the rest of the process continues to go as smoothly as things have so far.

We love you all and thank you again for your continued support!