Liver biopsy

Evan has been enjoying his time away from the hospital. We took him to a local park where he loved the swings and the slide. He does not, however, like grass. I guess that is what happens when you live in the desert. Lol! Evan has been back to himself running around and playing with his toys. He has started to eat some things by mouth. He likes pretzels and yogurt. On a different note, the virus that Evan has has decreased from over 1,000,000 down to 3,000. That number is from Tuesday, so it may even be lower now. The sad thing is that because of the virus his anti rejection med levels have been kept very low. His liver numbers have now increased so they did a liver biopsy. We should know the results tomorrow. The doctors believe that the numbers are likely due to the low level of anti-rejection meds which would then mean that his liver is showing signs of rejection. Although that word can be very scary, it is very common for patients to have bouts of rejection in the early months post liver transplant. They are treatable and the liver goes on to function normally after treatment. We were anticipating this possibility so are not completely surprised at this result. More disappointed than anything. We know that Evan will be okay... It's just a matter of time

DISCHARGED!

Evan was officially discharged from the hospital yesterday. The doctors had a discussion about it and decided that there was nothing they could do at the hospital that we couldn't do with outpatient care. Evan will continue to have cidofovir treatments 3 times a week for the virus until it is gone, but at least he gets to sleep at the apartment with us and be with us here every day! So much better than him being stuff in the hospital all day every day.  Our first night went well. Evan slept so much better than he has his entire time in the hospital and woke up cheery and ready to play. Definitely must have something to do with the fact that his vitals weren't taken over night and nobody drew blood from him this morning. We still have a road ahead, but I am grateful that we are all sleeping under one roof now!

Disappointed :(

Not sure why I keep getting my hopes up that we will get out of the hospital any time soon. Evan's adenovirus numbers jumped up again to 600,000. The doctors are not worried as they said this is typical of the virus and that the treatment takes time. The fact that it didn't jump back up over 1 million is a positive. They will do another course of treatment tomorrow and then will retest him on Wednesday with hopes of having him out of the hospital Thursday. All they are looking for is a continued trend in the numbers dropping for us to get him out of the hospital and then he will continue his Cidofivir treatments as an outpatient. I wish I had better news, but right now the good news is that Evan is super playful and acting like himself! :) I'll update again when I can, but for now we are staying in the hospital for a few more days at least.

Address in California

Many of you have asked for an address to which to send things for Evan. We anticipate being here at least another month. Our address will be:


555 W Middlefield Rd.
Apt D104
Mountain View CA 94043

Quite a jump!

Just had to post...just got the results from Evan's bloodwork from last night and after only 1 cidofovir treatment the amount of virus in his blood jumped from 1.2 million to 200,000!!! That is a jump of over 80%! That means that less than 20% of the virus is left in his blood! :) The treatment is working! This means we are one step closer to getting out of this hospital! Woohoo!

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!