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.

Maybe Today

We might be released today. He was running a low grade fever last night but the cultures all came back negative, so thats good. His SATs keep going down but they think its because he needs to get up and move around more. They have him on a medicine to help his lungs until he can feel better and start breathing deeper. (Ray about had a heart attack himself when they told him how much that medicine was.) He looks better today, more color in his face and when he does get up he is stronger.

I am flying out this afternoon to go to my gma's funeral. It's going to be really hard to leave him but I think I will have regrets if I don't go, and the other kids need me. And I need hugs from them. I will be back tomorrow night. (I'm such a baby but I'm so nervous to find my way through LAX.)

Hopefully Ray might be able to do an update or two while I'm gone. You can text me if you want to also.

We're Still Here

They had hoped to release us today, but it's not going to happen. He needs to be getting out of bed more, eating better and getting his bowels moving. He gets upset when we tell him he has to do it, but we are being tough and pushing him. It's so much worse on him to just lay in bed. You actually get sicker if you just lay around. We also think he is playing on us just a little bit, lol.

Yesterday we got to have our own personal viewing of the movie Hop. Universal brought the movie over for kids here at the hospital to watch. Wow, we've got to watch two fun, new movies while we have been here.

Well, hopefully we can get this kid up and moving and find that appetite he usually has.

Update

Sorry we haven't been as good to put updates. We are
trying to get him up and walking and sitting in a chair. So he is taking up more of our time. They were hoping to release us tomorrow but he isn't able to keep his SATs up without oxygen. So they are supposed to be doing an ultrasound. I thought they were going to do one yesterday but they didn't.

It wears him out to get him up but its so much better for him. He had a really good attitude this morning but is more frustrated this evening.

We will see what they find on the ultrasound and go from there.

Good Morning

We made it back to the hospital through all the LA traffic and fog, or smog. Not sure which it is. I can't believe people become accustomed to this traffic. The Ronald McDonald house is about 16 miles away. It usually takes us just over 30 minutes to travel between there and the hospital. Last night it took us over an hour. There was a wreck but oh my goodness there are so many cars.

Anyway, he looks really good this morning. When the Fellow Cardiologist asked him how he was he said "good". All the other times when people have asked him he kind of gets upset and says not good, and that he hurts. He still doesn't have much of an appetite. We did get him to eat a little bit of potatoes and gravy and corn last night. Our goal is to get him out of bed again today and walking further.

And what a small world it is. Our nurse from yesterday and again today is from Bluffdale. Nate and Ambrea know her brother and her moms friend is who use to cut our hair. Just crazy that among all these millions of people we get a nurse who use to live where we did. We really like her as a nurse, she is really cute.

Rio!!

Lucky us, we got to see the movie of Rio.

Fox gave us a private viewing of the movie Rio in our room. It was a really cute, bright movie. Ashton even got a poster of it.

We have had him out of bed twice today. Once we took him for a ride around ICU and then he walked about 2 feet and then we had him sitting up in a chair for a while. We are still working on keeping those darn lungs clear. His SATs are dropping and it's because he is shallow breathing because he doesn't want to cough, even though he should be.

He is starting to act a little happier. Its good to start to see his personality coming back

When it Rains it Pours

We just received word that my gma passed away. What a wonderful woman she was. She lived a very good long life. She would have been 102 in June. She was a very strong, generous, determined, strong willed person. She never let anyone stand in her way. I have so many memories of visiting with her and gpa during the summers. She always had time for her grandkids. She would go places with or make things with us. Every year at Easter she would make us a new sugar egg. You know the ones that you could look inside and there was a little Easter scene. For my 16th bday she gave me a porcelain doll she had made. Both Ambrea and I treasure that doll to this day. We will never forget her whistle. Whenever she was happy she would whistle. She hasn't whistled for quite a few years now, as her mind has slowly slipped away. We have a picture of her riding a horse when she was 80. She was never afraid to try something new. She was always knitting, or crocheting or quilting. She made our wedding cake. She learned to oil paint. She had an orange Honda 90 that she would take me for rides on. As I got older she taught me to drive it. Then she let me have it so I could take it when we went camping. I tell ya she was a go-getter.

I could go on and on talking about memories and what a wonderful person she was. She will be so missed, but she was ready to go be with her family. We will treasure the memories and she will never be forgotten.

Baby Steps

Here we are, another day towards recovery. He really needs to get out of bed and get moving so he doesn't get pneumonia but he gets so nauseated. We think it is the pain meds so he tried eating a little bit of cracker, some juice and they are going to give him something for the nausea. They want him to try to walk a little bit but they also want us to get him in a wheelchair and get him outside into the outside air. We were hoping for sunshine but its pretty overcast, but they want him in some outside air because it is very good for you.

If we can just get rid of the nausea I think things will get better for him.

Good Bye Chest Tubes!!!!!

Well we just pulled out the final chest tubes. Ashton was very scared to have them pulled. He wanted to be asleep, however they did give him some medicine that will make him not remember what happened. As they took them out they asked him to hold his breathe, but it still took his breathe as they came out. He is very tired with all that has happened yesterday and today. He does not like to cough because it hurts too much. They are doing back and chest thearpy(patting on his chest and back). He is having a little harder time breathing deep and his SATs are lower. The nurse went to discuss with the Dr. Let's hope we can get him breathing better.

Rounds

We just sat in on the drs rounds and its still pretty much as we thought. Except they are hoping to pull both chest tubes, not just one. We gave him a little bath and he is now in a cardiac chair. Its kind of like a small bed because he can lay in it but you can also sit up in it. They are going to get his pain under control so that he won't hurt because we need to get him up and moving. They could hear bowel sounds so they want him to try some broth. He said he's not hungry but hopefully he will at least try it. They also want to do another ultrasound. I love it when they do that because we get to see his heart working. It's kind of like a relief to see it actually working.

As things happen we will keep you all posted. Again, thanks for all the prayers and support of everyone. We couldn't have done it without you all.

6 Hours

Wow, Ray and I got 6 hours of sleep last night. That is like normal for us. We're good to go for days now.

When we got here this morning Ashton was not feeling so great. The pain is more noticeable now because they aren't keeping him sedated. Now to just stay ontop of the pain. We were a little frustrated that he was crying when we walked in. Of course he probably wasnt until we walked in, then he let it all out. We hope today to remove one more chest tube and maybe start on clear liquids. He keeps feeling nauseated though so we will see. The drs rounds don't start till 8 so after that we will know a little more.

Yeah, no more breathing tube!!

It's Out

Woo hoo the breathing tube is out. Continuing on our way to recovery.

They were telling him to think of something to distract him and the nurse said "think of your girlfriend". Hmmm wonder who the girlfriend is? (LOL) So then the dr. said how about you think about Disney land instead. Everyone was laughing about this.

He has had a really big day today. Hopefully he can rest now for some more progress tomorrow.

Advice

A word of advice....if you know that someone is going in to have surgery and they are going to have to have a breathing tube make sure you learn some hand signs beforehand. It is so frustrating because Ashton is trying to tell us what he wants to say but he cant. He tries to use his hands but it doesn't always work. We have him write on a white board but he is weak and it's still hard to focus. If only we could have learned some hand signs like they teach small kids now.

Tubes

He had a wire pulled out from his heart and now he is having 4 of the 6 chest tubes pulled. They have let Ray be right there for the whole thing. I am in the room but not watching. They give Ashton a sedation to pull the chest tubes because it can be quite painful if not for the sedation. As she is doing everything she is explaining things to Ray. He is becoming evermore educated.

Sleep???

Sleep? What's that? We actually got a little bit last night. We became very strong and left him in the care of the nurse and went to the Ronald McDonald House and got some sleep. We slept for 4 maybe 5 hours. Not sure if I personally feel better or not. Leaving him makes me feel like I've missed so much.

Having the Ronald McDonald House will be so nice when they release him from the hospital because after he is released we have to stay in the LA area for a week or so, and this way we can take him with us and have a nice room to stay in and the access to a kitchen to be able to prepare meals and not have to eat out. They are giving us a very reasonable rate, thanks to a wonderful social worker here at the hospital that has worked it all out for us. The only difficult part right now is one of us has to at least go to our room once within a 24 hour period of time or they will cancel our reservation. Ugh, what if we want to just stay here with him/ It wouldn't be that bad but with this LA traffic it takes 30 minutes to get there. (I can't believe the time people spend in their cars here with with commuting time.)

He had a good restful night from what we hear. They are still testing him to prepare him to get the breathing tube out. His blood gases are still looking good and his chest tubes are not draining much, which is good. They hope to pull 3 or 4 of them today.

Anyway, it feels so good to be back here with him. I know we need the sleep but its sure hard to leave him.

Baths and Clean Sheets

They just gave him a bath and changed his bedding. It's amazing how they do it. They use a soap that doesn't have to be rinsed. They have a bowl of warm soapy water and rub him down. Two of them do it. Then because his sheets are wet they change the bedding. Roll him to one side and take the old off and start putting the new on. Then roll him to the other side and do it again.

His nurse and the gal who helped are both African American. Not that that makes a differance but the one that came to help is so funny. She was scrubbing his head and hair and was getting behind his ears and said "we can't have any potatoes growing behind there". She just kept rolling them off and had us laughing. Ashton didn't think it was all that great tho. He doesn't enjoy being manipulated around a lot. Anyway, she was really funny and hopefully he feels a little better now. I know Ray and I will feel better once we can get a shower. In fact she was teasing Ray about getting him scrubbed up also.

SURPRISE

What a surprise we received today. Ray had gotten a text from nate telling him to go to the elevators. He was thinking Ok? So he went out and went to the elevators and surprise, there was nate, two of rays brothers and his dad. They flew out this morning and came to visit. Wow, I couldn't believe it when ray walked in with nate. If you know me at all you know what I did.....yep ran to him and started crying. It was so good to see him. Any way, we took everone in one at a time to see ashton. He really recognized nate and when nate held his hand ashton squeezed it.

They came bearing gifts and cards for Ashton and snacks for us. He will love reading all the cards once he is up and feeling better.

I know everyone has been waiting for an update today and I'll finally get it. Our little surprise has set us back. So he had a pretty good night. The xray from this morning looked good. Not excellent but better than yesterday. His blood gases are coming back good also. They hope to get the breathing tube out either tomorrow or Monday. He got a lot weaker from putting in the 3 chest tubes yesterday so now he has to have the breathing tube in longer. They are giving him chest treatments so he won't get pneamonia (however you spell it). The treatments just consist of patting on his chest and back. And they are rolling him from his left side, to right side to back every 2 hours. All in all today is much better than yesterday. We realize that things can change in an instant so we are still holding our breath.

ZZZZzzzzz

Here we are in the middle of the night. Ray and I squeezed onto the little couch bed her in Ashtons room and got a little bit of sleep. Maybe an hour or so. We will try for some more.

Do we dare say Ashton seems to be doing a little better. He loves the nurse he has right now. She does little things for him that make such a difference. Like she put a cloth diaper under his arms so he cant feel all the tubes. He has been communicating with her with hand gestures and by writing on a white board. Then after he writes it we come up with a hand gesture so next time we will know what it is. For example, if he wants his mouth swabbed out with water he makes wave motions with his hand. (FYI, he is still intubated which means he has the breathing tube in still. When you have this you have no voice at all.) She also showed him that if you hold his chest when he has to cough it doesn't hurt as much. But he only likes her to hold his chest, not mom.

Now don't get us wrong. He hasn't had a bad nurse yet. They have all given him great care and been very attentative to him. I think some of the differance tonight is he doesn't have this nurse constantly running making alarms go off, needing blood, stuff like that. The whole medical staff here has been great.

Again though, we still are not out of the woods. We are still offering constant prayers for him. We can't let that line to Heaven become open. We need to keep it busy.

I HATE Rollercoasters

And what a ride this is. So as of right now we are not going into the OR. I think it must have something to do with all the prayers that are being offered on our behalf. That line up to heaven sure has been busy on our behalf lately.

We do need to remember that things could change in an instant. He obviously will continue to be watched very closely. What happened was at about 2 am on Thursday morning he started to have a lot of bleeding out of one of his chest tubes. Then they kept seeing a mass or clot on top of his left lung. It needed to be removed. Their first attempt was to put another chest tube in. We got some drainage but not enough. So then they went in and did a flush with an enzyme to try to break the clot up. Then all of a sudden he was loosing tons of blood out the chest tubes and thats when his blood pressure dropped down to the 40's and 50's. What they think happened was the enzyme broke up the clot but it also broke clots up that shouldn't have been. So then they put another chest tube in. Thats 6 chest tubes now. But from the last xray and blood gas (tests on his blood) things look like they are improving. But we are still holding our breath because like I said things can change in an instant, just like they did this afternoon.

Again, thank you so so much for the prayers. Obviously they're doing something. And to all those who have made donations. It will help out a lot. We hope to be able to check into the Ronald McDonald house tomorrow, but only if Ashton is doing better. The funds will help. Currently we are just hanging out in the hospital and our car. It's quite comical actually. But a good nights sleep in a bed will be wonderful.

Prayers

More prayers needed. We feel so greedy to keep asking for prayers, but we just had a very scarey 2-3 hours. All of a sudden his blood pressure dropped very low and everyone was running around trying to get him stabalized. It was very scarey!! They had to put in another chest tube. That's 5 or 6 now. After a while a dr came to talk to us and then the surgeon. They have him stabalized and we are still waiting to see about surgery.

OR

We are going back to the OR. The left side cleared up some but not a lot. And there is now some fluid on the right side. It could be caused from the flush they did. As hard as it is to see him go back in this will help in the long run. With the fluid in there it makes it hard for him to breath well and also for the heart to function well.

We once again want to thank everyone for all they are doing. All the comments and texts mean a lot. We received a fun package for Ashton and also a donation on Pay Pal. How can we ever thank everyone for everything. Its so hard being so far away but the medical staff here is great and giving Ashton very good care. Also, the Social Worker was able to get us into the Ronald McDonald house for a very good rate. With the donations we will be able to go there and stay so that maybe we can get some good solid sleep. Sleeping either in the car or in Ashtons room means we don't get a good deep sleep. We are basically running on fumes right now. But whatever we have to do, we will.

Plan ?

So the surgeon decided to try one more procedure. They basically did a flush into his left side. They put an enzyme in in hopes to break the clot up. They will let that sit for about an hour and then drain it, then have a CT scan to see what happened. If it didn't work then off to the OR we go. What a roller coaster ride, but this roller coaster is not fun at all. We are just ready for him to get on the road to recovery.

Plan B for the Blood Clot

Well plan A didn't get enough of the blood clot, so they are going to open him back up to remove it. When they remove the clot it will enable his left lung to expand alot more and cause less stress on him and his heart

This is a picture of the xray. You can see on his right side all the dark space. That is good. On the left side there is not as much dark space. That is because the blood is taking up the cavity space. Hope this picture helps a little.
. They should take him about 7 am.

BLOOD CLOT }: [

Well as we just finished eating we recieved a call from the Dr in ICU. He and the surgeon have reviewed all the tests and came up with 2 game plans for the clot. The clot is on top of his left lung. First plan is to see if they can insert a tube (Chest Tube) into the clot and suck it out. If that doesn't work then back to the OR where they will go through the sternum again to remove the clot. We are hoping that the 1st plan works. He has been communicating with us while the breathing tube is still in. So if they can get the clot with the 1st plan they will try to pull the tube tonight, if not then hopefully sometime tomorrow. He is such a patient boy. He is not happy or comfortable and very scared, but he is one of the strongest kids we will ever know. We will let everyone know after we try the 1st plan.

Paypal Donations

First off, this is not Carolyn or Ray.
This is Lacey.
Some of you may know me as Carolyn's running buddy. :)
I just want to say that I love this family so much.
Carolyn and I have been running together almost every morning for the last two years.
We have been through so much together.
We have laughed at each other as we have fallen on the ground (I will let Carolyn tell you that story one day) shed tears of sorrow, rejoiced in each others joys and so much more.
We like to call our time out on the road our therapy sessions.

I know that this family would never ask for help even if they really needed it.
I know how hard it is "living" at a hospital and I know the bills expenses that can come from it.
I know that the expenses that they had planned for are far more than they expected. I have set up a paypal button on the right hand side of this if anyone is willing and would like to donate. Every little bit counts. I know that it means a lot to their family. They are very thankful for all of the support.

Ashton, you are a fighter! You have been since day one. KEEP FIGHTING BUDDY! We can't wait to see you back up again.

Bump....

Well he has had an xray, two ultrasounds and a ct scan now. To have the ct scan we had to tske him downstairs to do it. Wow, what a production. It takes longer to prepare him to go and then get it all put back together than it did to do the scan itself. They even switched him to another bed for it. Thank heavens for sedation. They can still see fluid in the left side. Now just waiting for the surgeon to look at it and see what needs to be done. Everything else looks good. Praying we can get this fixed quickly and as easily as possible.

Holding On

We were included in the dr.s rounds to see what they decided. For now they are going to give him medicine to try to stop the bleeding. A type of clotting medicine. If it doesn't work they may have to go back in, ugh. We so hope they don't have to do that. They sre worried if they put in another chest tube because they would risk hitting a colateral.

A Long Night

Ashton was doing very well most of the night but around 2 he started having a lot of drainage from the chest tubes. They did zn xray and can see fluid around the left lung. They think it could possibly be a collateral that they nicked. There are 3 options: open him back up again, go in and do a cath, or angiogram, or put in another chest tube in the area where there is fluid.

I know we've already asked for a lot of prayers but we need more please.

On the Road to Recovery

We finally got to see him. He actually looks a lot better than we thought he would. All the nurses and dr.'s are pleased with how he is doing. Now we are just on the road to recovery.

Warning: some people may not like to see these pictures.

The Surgeon

We talked to the surgeon a few minutes ago. First let us say he is amazing. Not only does he have great medical knowledge but he is so kind to us.

This is for those of you with medical background or knowledge....he had to be really careful going in because the aorta was right behind his sternum. He saw that on the CT scan. Thank heavens for all the testing that was done previous to surgery. He enlarged the right ventricle so that he could put a conduit, with a valve, on. The conduit is actually a jugular vein with a valve from a cow. He had previously explained to us why he likes to use those. He closed the VSD, the hole between the ventricles, ot lower part of the heart, and made the hole between the upper chambers adjustable.

The surgeon had just checked on him again and said his pressures in his heart look good and he is SATing at 98-99. He is on 60% oxygen. He expects his crit to return to normal after some time. It was at 61. It should be at about 40. The high crit count was one of our main concerns.

We want to thank everyone for all the fasting and prayers offered on our behalf. We know we were guided to this surgeon. Even thouhgvits hard being so far away we know we were meant to find this surgeon.

Please forgive all the spelling errors. We are finally going too see him. Thanks again.

Amazing Team

We just want to say what a great cardiologist we have. He just called Ray to see how everything is going. The funny thing is, the surgeon here had already called our cardiologist to give him an update:). He didn't know some of the fine details but he said the surgeon was able to do evderything he wanted to do. Ashton did very well and so far hasn't even needed blood.

Off Bypass

He is off the bypass machine. Such a relief. He is doing well but it will be probably a couple more hours. Things went well and no excessive bleeding.

Waiting Room

Here we still sit in the waiting room. Its a really big waiting room where everyone waits. Its hard because some people who are waiting are waiting for someone who isn't having a real critical surgery so they are all talking and visiting and even laughing. Don't get me wrong. I'm glad they're happy but its hard for those of us who are sitting here all day on pins and needles.

update.....

They have all the lines in and are in the chest. That can be very challenging when they are going in for the 3rd time (or more). They have the scar tissue to deal with and bleeding. He is still not on the heart lung machine yet tho.

surgery

Here we sit, still waiting. We haven't had even one update yet. Ugh, its killing us.

surgery

They just took him back. We thought it would be easier as he got older. We think its harder. What do you say to your son when he says "why don't you try doing it" or when he's worried he will wake up during surgery, or worse not wake up from surgery. Such hard questions to answer.