Good Times, Great People

What could be better than spending a beautiful, sunny, slightly windy October Sunday afternoon with all of your closest friends and family? Not much more except hearing some great music, raising money for Joaquin and awareness for organ donation!

I'm almost at a loss of words (if you can believe that) as to how I can express my deep gratitude and appreciation to everyone who took the time to come down to the Great Basin Brewing Company to support us. Thanks to all of your donations we raised $3,434! Everyone is very pleased with how well everything went with it being the first fundraiser. And all of the credit goes to our fabulous friends and family: Meredith, Ryan, Aaron, Kelly, Mitchell, Bob, Bobbie, Jenn, Brooke and everyone else who helped in putting things together. Also, a thank you to the Great Basin Brewing Company for being so gracious in lending the space and the hospitality. And we can't forget the bands who made it out: Sol Jib, Native Root, Frame of Mind, and Anthony Postman!

We packed up Saturday morning and left after I dropped Grandpa Johnsen off at the airport. While I was doing that, Mom took Joaquin to the hospital to get his blood drawn. We arrived in Reno around three o'clock. One of the things I miss so much about being away from home is our family potluck-style dinner so of course I wanted to round everyone up to get together for dinner. We made lots of yummy food and there was lots of great conversation.

Sunday morning we slept in a little and after we got dressed we loaded into the car and drove down to the Great Basin. The festivities were supposed to start at two o'clock, but things didn't really pick up until around three, which was fine because the Great Basin didn't mind that we ran over the four hours that we had originally planned the event for. It was scheduled to run until six, but Frame of Mind didn't end until ten o'clock.

It was so wonderful to see all of my friends and family there supporting us and listening to the music. There was a couple there that had read about Joaquin from a flyer that was hung up somewhere in Truckee and came down to support us. It was hard to believe sometimes that this was all for Joaquin and it was humbling to see all of the love and support from everyone.

I am so ready to come home. And being home for that short amount of time really makes me realize how much I miss my home and my friends and my family. But I think it's great that I am able to spend so much quality time with my Mother and that is one very positive aspect about being down here for so long. We both have time together and he is able to spend time with and get to know her grandson.

So we had to leave very early this morning to make it back to Palo Alto for clinic. Although we didn't have a set appointment - which can be good for it's flexibility aspect but bad for the amount of waiting it sometimes involves - we still wanted to be there before noon. One of the question that I wanted to ask in clinic was when did they think that we would be going down to just one clinic appointment a week, which is usually what happens after one month post-transplant. Amy, the nurse, usually writes down the questions we have that she can't answer so that the doctors can respond to them during their (brief) visit.

Dr Sarwal was the physician among many physician on any given day and any given rotation that came to see us. She asked how much water or fluids would Joaquin drink. I told her that I wasn't too sure but that before the surgery he was drinking a fair amount. I said that I would know better once he wasn't on 24 hours hydration.

And apparently that's what she wants to find out as well. We are trying out a new formula to bring down the potassium until the Prograf dose is lowered and we are also just hydrating constantly over the course of about 12 hours or until he gets 1 liter of water and then it's up to us how he gets the other liter. He can have juice, water, milk, etc. We are so excited about not having to be on 24 hour hydration because he's getting to this point where he wants to start walking and he's really mastered his crawling skills and it's hard to follow him around with his feed pump - not to mention annoying because it pulls on his face. We had been told by Cathy that he would have to be on constant hydration for the first year after transplant but then she ended backing that down to three months. I think that she would just rather over-estimate the amount of time rather than tell us a shorter time, and that's understandable.

Also, our next blood draw isn't until next Monday! The last one he had was Saturday, so that's over a week of no pokes. Our next clinic appointment is next Monday and that will just be a nurse visit, no physician until the following Monday. While Dr Sarwal was telling us this, Mom and I are sneaking glances at each other and when she leaves the room and it's just us and Joaquin we start giggling and have group hug with Joaquin in the middle.

All of this was sprung on us so quickly but I love it! This is just leading us closer to home. Our exact date of expected "discharge" from the RMH is December 4th, but Mom has to report home to the resume her teaching duties in the middle of November and I've also (not so) secretly hoped that we might be able to move back to Reno by Thanksgiving. If we aren't allowed to leave at that time I think we would just make the trip up there, but that's only about a week or two until the scheduled date. It's mainly up to Joaquin and his continued healing - as long as he keeps doing as well as he's done we might get to come home early!

These are just a few of the many photos taken yesterday. If anyone has any more they want me to put up or link to just email me at mjohnsen@rushmore.com - Thanks again to everyone for making it a memorable and wonderful weekend! We love you all!