Look, I Have "Moo" Parts

From this....

This is a picture taken the day after surgery. We rode a very scarey roller coaster over the past two weeks, but now..
... two weeks later.

This was taken in the Ronald McDonald House kitchen. Once again a group brought dinner in for us. The volunteer help and donations are wonderful. This was a church organization and they were some younger guys who put it together. They were very upbeat and fun. As you can see in this picture Ashton's personality is starting to come through. We have seen it quite a few times today. He went to the kitchen with us but he didn't eat. But at least he was up and socializing with people. And the "moo" is because they put a jugular vein from a cow in him so we kind of tease him about it. But only a little bit.

Going Home

We got the approval to head back home today. We will be heading back tomorrow. It seems like we have been gone for sooooo long.

Once again we are counting our blessings for finding this medical staff. There were some times that were rough but they were very professional and always treated us great. We took a few pictures before we left. I wish we would have been able to get pictures of everyone, but we didn't.

This is Dr. Kelly. He is one of the Dr.'s in the PICU, and he is an awesome Dr. He was the Dr. who was working when Ashton gave us such a scare the Friday after the surgery. He handled everything so well. The next week he wasn't scheduled to work but he came in one day to see how Ashton was doing. Thanks Dr. Kelly, for everything.

This is Anita, one of the Nurse Practioners. She was the one we met when we first came to UCLA to meet Dr. Laks and see if he would do the surgery. The other NP is Mary. We didn't get a picture with her :(. Both of these nurses were also wonderful, and so considerate of Ashton's feelings.

This is Robert, the Ultrasound Tech. He did all of Ashton's ultrasounds, except for one. One of the Cardiologists did one on him one night. She is from India, so her name is hard to remember, but her first name is something like Pihal. It's pronounced pile. She is very tiny and looks young, but once again, she treated us very well.

And what a bummer, we didn't get a picture of Ashton with the surgeon, Dr. Laks. What an amazing man he is. He is also from another country, not sure where exactly though. He is not a very tall man and has a very calm and mellow demeanor about him. His knowledge and expertise has made him famous. People come from all over the world to him. He gave Ashton a new life, well when he is all healed and gets feeling better. Without this surgery Ashton's heart would have eventually failed him.

Even though it has been a very stressful couple weeks we have to say UCLA was wonderful. Everyone treated very well, gave Ashton the very best care, and if we ever need to come back we will. Something else that is great about UCLA is the diversity. It doesn't matter your back ground, your religion, your color, anything, everyone treats everyone the same. If only it could be that way everywhere.

We are also so thankful to the Ronald McDonald house. We had no idea where we were going to stay. About the second day after surgery a social worker talked to us about where we were staying (probably a nurse contacted her because we were sleeping on the couch in Ashton's room or in the car and we were looking pretty hammered). She got us all hooked up to stay at Ronald's. And it's been great.

Taco's

This morning didn't start out so well for Ashton. As he put it "I feel like crap". Anyone who knows him knows that this isn't normal language for him. He still didn't have an appetite and was grumpy that we made him eat a very small bowl of cereal. (Can you say tough love? :) ). He is just not going to heal if he doesn't have "fuel in his tank", as Mary, one of the Nurse Practioners, told him. As the day went on his attitude got better. Then he said a taco sounded good. So we wasted no time and he and Ray headed out to get a taco. And he ate the whole thing. Woo hoo. After that little excursion he took a little rest. We are now outside on the patio enjoying the beatiful weather. There's nothing better than fresh air to belp you feel better. (Although at the moment Ashton disagrees with us.)

Barnes and Noble

You know Ashton isn't feeling well when he doesn't want to stay at Barnes and Noble. We went to this really cool shopping area in Glendale to Barnes and Noble to get a movie Ashton has been wanting and we couldn't find it anywhere else. We got the movie and he was ready to go. That is just not like him. He and I usually go and can spend a couple hours. It's so hard to see him this way, just not himself. Every once in a while his personality shines through, and we treasure those moments.

My New Addiction

Ok, we all know I'm addicted to running. Which, by the way, I'm having withdrawals because it's been almost 3 weeks since I've run. I cannot wait to get back out on the pavement. So Lacey, Andrea's and Jamie, be ready to start logging a bunch of miles (lol).

I now have a new addiction. I had gotten a Nook for the purpose of being able to keep up our blog while we have been on this adventure. Yep, you can do more than just read on a Nook. I keep up on our emails and blog. Oh, and of course I do read because I also love to read. Thanks Joy for lending me books on the Nook to have to read while we have been here. But just this week they came out with apps for the Nook. Ugh, I'm so addicted. I wish they would have come out a few weeks sooner, but hey, I'm not complaining. Now I don't have to bug Ashton to always borrow his ipod (which by the way an anonymous person helped us to get that for Ashton so he would have a variety of intertainment while he is recovering).

Speaking of recovering, Ashton has a 6 week recovery period. He will not be going back to school this year. All of you who are jealous, think again. He said he would much rather be at school than go through this. He has to be careful not to be bumped, he can't reach back and can't lift anything over 5 lbs. He gets tired very easy because his body is trying to recover from such a serious surgery. And the meds make you feel weird. But once again, we are so thankful for a loving Heavenly Father who has listened to the outpouring of prayers on our behalf and for guiding us to a medical team who has the knowledge and expertise to help us.

Not Yet.......

We aren't coming home yet. We had our appt at the hospital today. They did an ultrasound on his heart and on the veins going into his arms. They said the waking up swollen is normal for postop, as is the extreme fatigue and no appetite. At least we now feel better about that. He is supposed to try to eat though, and drink, drink, drink.

However, on the ultrasound they could see that the left ventricle is not squeezing as hard as it was previously. They said it's probably due to the heart still healing and we might just need to change some meds. But they want us to stick around and we will have another ultrasound on Friday. As eager as we are to get home we don't want to get home and then have a problem. We would be 6 hours from UCLA and 4 from Salt Lake. We feel better about being only 30 minutes from UCLA.

We have to say how impressed we are with the medical team we have dealt with. Everyone has been wonderful. But we must also say how many of the team know our cardiologist, Dr. Day, and how many of them have commented on his expertise and knowledge also. If it weren't for him we probably wouldn't have met the surgeon, Dr. Laks. Dr. Day has called many times to get updates on Ashton. Thanks Dr. Day, and many of the staff at Primary Children's who have previously given Ashton care and will continue to follow him. We are very blessed to live in a country where there are so many places to get good care.

Day or Night??

Ashton definately has his days and nights mixed up. At 1 in the morning I told him it was time to turn off the tv. Then he wants to sleep the day away. He and Ray run a little errsnd to the store earlier today and since then he has just wanted to be lazy.

He has woken up puffy in the eyes and face the past couple mornings, or afternoon, so we made a call to the hospital. They want him to try to sleep propped up and try not to lay on his right side. He just gets frustrated when we tell him things like that. We have an appt with the surgeon tomorrow so they want us to get xrays first. We sure hope this isn't a big setback of some sort. He also still does not have an appetite. And how do you make someone eat. We ask him to just have a few bites of things. Wish I could give him some of my appetite.

Battle Wounds

He fought a VERY tough battle, but he is slowly but surely winning. His poor little body is so beat up. All the spots with the stitches are where the chest tubes were. He had 6 of them. His "zipper", or where they went into the chest, is actually glued together. There are stitches underneath it that will just dissolve, but they glue the top layer. He also has pokes and bruies on his arms legs and by his feet from IV's and art lines.

He asked me today a little bit as to how they get into his chest. I didn't go into much detail. I did explain that they don't just start cutting. It is a very detailed process. They have to be careful where and what they are cutting.

We were finally able to get him into the shower this afternoon. He was very scared it was going to hurt. We told him to just not turn towards the water, so it only hit his back, not his chest. He can't bath or swim for 6 weeks. Once we got him in we couldn't get him out. The water felt so good to him. He hasn't showered for almost 2 weeks so I imagine it felt wonderful. Then once he recovered from that we went down to the kitchen to eat. That took a lot out of him, so he is resting right now.

Ronald's House

I made it back to LA last night. I am so thankful I went to my gma's funeral. It was good to be there with family and friends. Thank you to everyone for your support. Even though we already miss gma so much we know she is happy, reunited with so many loved ones who passed on before her.

We are here at the Ronald McDonald house just hanging out. We are so thankful they have places like this for people like us who are so far away from home. Last night they had a nice ham dinner that was donated from United Health Care (I wasn't back yet but Ray and Ashton enjoyed it). Ashton also received an Easter basket. And we just went down to pet a bunny, Oreo, and 3 dogs. The bunny was so soft and one dog was doing some tricks for us. And once again Ashton received some fun Easter treats (not nuch candy though).

Ashton is doing fairly well. He is still experiencing pain and needs his meds to be comfortable. He has his days and nights mixed up from constantly being woke up during the nights. We are still working on getting his appetite back. Nothing sounds good to him, and he has a huge canker on the end of his tongue. Every once in a while we see his personality come out. Otherwise he is just quiet and wishes he was back to normal. (Actually once he is all healed he will feel a lot better than he did before.)

Released

What another big day this has been. When we got to the hospital this morning Ashton was getting ready to eat some breakfast. Woo hoo, he is finally getting his appetite back. He was able to eat some scrabled eggs and a couple bites of sausage.

I made it through LAX and made it to Salt Lake. (By the way, I hate flying. I get sick and I get anxiety to land and take off. I seriously thought I was going to loose it.) My cousin and best friend,Gaylene, picked me up and we drove to Salina together. It usually takes about an hour and a half but I can't even remember the drive. It was so nice to have some time together to talk and get caught up. We made a quick change and headed to the viewing. Goodness it was so good to see my mom, brothers and sister, and especially the other kids. I needed hugs from them so bad. I'm so thankful for the girls and how dependable they are that we can leave them in charge to hold the fort down while we are gone. And thanks to Nate and Savannah for driving to come just for the viewing.

Shortly after Ray took me to the airport they released Ashton. He's free, lol. And he left the hospital without oxygen. He and Ray are going to just hang out at the Ronald McDonald house. They generally have something for the kids to do every day and hopefully he will get feeling better so he can do some things before we leave to come home. Ill try to update tomorrow before I head back to the crazy LA.