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Thursday, June 30, 2011

Two Weeks Already.

It's so hard to believe we have been home for two weeks. We spent two Thursdays ago travelling all day long. We had a weird experience at the airport in Minneapolis. We had just heard the call that our plane was boarding, when one of Ashton's nurses from St. Mary's came walking by. Rochester is about a two hour drive from Minneapolis, and the nurse had decided kind of last minute to visit some of his family in Atlanta. It was kind of good he came by, because Ashton had been throwing up all morning, which he has a tendency to do from time to time, usually after eating just a bit too much. He had had nothing that morning, nor was he running a fever, so we were pretty sure it was not the flu. Upon talking to the nurse for a couple of minutes he told us that this surgery fixes the heart, but screws everything else up for a while.

The plane rides were short, the layovers long. I was reminded, once again, that I absolutely hate landing in Vegas in the summertime. The heat really throws the plane around (one landing there a few years ago was not a three point landing, but rather a great bouncing hither and yon; that's the closest way to explain it). It was amazing that we could leave the prairie lands, forests, and cool weather of Minnesota in the morning, and end up in the hot, arid deserts 1200 miles away later that afternoon.

From Vegas it was only a short shuttle ride back to Utah's Dixie. Ashton was so excited to be heading back home that he jabbered and sang the whole way. The kid has a set of lungs. I was feeling bad for the other people on the shuttle. We reminded him to keep quiet, but he was just way too exited.


When we got to St. George we were greeted by numerous family members. There were baloons, welcome home cards, and cousins and aunts whom Ashton had never met (his dad's sister was in from Ohio). We were sent home with strict warnings against his falling over. Doing so could break the sternum which had been wired together much as a farmer would mend a fence with bailing wire. The first thing he did when we stopped the van was to fall out of the vehicle. Everyone's heart stopped, I think. Thank goodness he was all right. He caught himself with his knees rather than his hands. One of the Physician Assistants stated that in her 30 years she has never seen anyone have any re-break the sternum. That's our Ashton, always trying to tread off the beaten path.


So, how's he doing? Well, the fluid on his lungs is all gone (hooray!), and he is able to do more things day by day, which means we have to ride him to keep him down. However, he wakes up almost every morning with a headache followed by bouts of vomiting. The headaches are generally bad enough to have him bawling. He wants relief, so we give him acetaminophen. Because of his nausea he quickly rejects that. There is a chance that he may still have problems with blood sugar levels, which means we will have to monitor this, too. Oh boy, more blood tests. He will be thrilled.

Wednesday, June 15, 2011

Coming Home!

We are leaving Minnesota early in the morning. We will be home by 7 p.m. We are excited to be home, but there are many things we will miss here, and a bit of our hearts will always be in Minnesota. In Ashton's case this will be literally speaking (sorry).

Our last day at the Ronald McDonald House was full of fun. The kids got to make "Cookie Monsters"



For Ashton, this apparently meant an excuse to squeeze the chocolate syrup bottle.

There was pet therapy as well. Ashton loved this because he has been missing his Pughetti. The dogs were awesome.



Anyways, off to bed to be up super early.

Tuesday, June 14, 2011

We are out!

So when they told us we were free to go, we were so excited we forgot to blog about it, and this post has been a couple of days in the making. They let us go late Saturday. We had a potpourri of free-roaming doctors, nurses, physician's assistants, x-ray technicians, and the like poking and prodding him for the entire day, but luckily, no blood draws. The poor little guy was fed up with health care professionals. Everyone at the Mayo works as one big team so this would explain why we had so many people in and out, but it sure makes it hard to keep track of who everyone is. Here are a couple of the cardiologists who would frequent the room.

An interesting thing about the doctors here is the fact that when they are not in their scrubs or white coats, they are fully dressed in suits. Highly impressive.

Of course, many new pills were added to Ashton's pill regimen. Due to the fact that he was getting a bit irritated about all of the unwanted attention, he stated that he would not be taking any more medication. He had one more to take for the day, but he claimed everyone was trying to give him dog pills, and he would never take dog pills. Here is what a "dog pill" looks like:


We realized that in a strange way, we would miss the hospital. We wouldn't necessarily miss the sounds of medical machinery making noises all night, the terribly uncomfortable cots that will make end up making a chiropractor independently wealthy, or the carts rumbling by every ten or fifteen minutes while we were trying to sleep, but we will miss watching the reflection of the Mayo-One helicopter take off and return, the top-notch care our boy received, and the Minnesota accent held by all of the nurses (which is something that should be federally mandated, in my opinion, for all nurses; it serves to be both reassuring and soothing).

After being released, we made the trek up two unbelievably long blocks to the Ronald McDonald house. Mom and dad had been frequenting the place to take showers, but Ashton was enthralled by all that is available for kids to do. There is an incredible play room for the kids, as well as regularly scheduled activities; If Ashton had been out earlier on Saturday he could have joined everyone on a trip back to Minneapolis to see a Twins game. Here are some pictures of Ashton in the playroom. We found out he is quite a pinball wizard.




As you can see, he is feeling much better. It will be a major chore keeping him down while he heals up this summer. Anyone have Duct Tape?

Staying at the Ronald McDonald house is quite an experience. There are people here presently from six different countries. We see nuns here, as well as the Amish. We are surrounded by people so different from what we are used to, but we are all connected. There is a great feeling of family and togetherness as we are all drawn together by the trials we are all facing in different ways through our young family members. Everyone is responsible for keeping up the house. There are no chore lists, but everyone busies themselves with their share. This experience serves to remind us daily that our lives our forever changed by our trials. You have choices in how you deal with what comes your way. It can either build you up, or crush you down. This is building us up, all right.

Friday, June 10, 2011

I Think Ashton's Had Enough

Today Ashton started his morning with an early morning wake up call for a chest x-ray and echo-cardiogram. They wanted to get some medicine in him to start with, so they kept him in the room for a while.

While he was waiting for the pain medicine to come up from the pharmacy a couple of ladies came in to do a blood draw. The one he had on Monday was a truly traumatic experience. He absolutely hated it. He climbed into my arms afterward and would not let me put him down for nothing. This time we had them use a numbing cream so he wouldn't feel it. That did absolutely nothing for the anxiety he was feeling, he was expecting a replay of Monday's experience. The numbing cream takes an hour to reach full effect. The ladies applied it and left. Ashton spent the whole hour telling me to get him out of here. He even got up on his own to try to escape a couple of times. He made it a ways down the hall and got tuckered out, so he came back.

They finally came back for the blood draw, and he screamed until the needle went in and he didn't even feel it. He was so proud of himself that he survived the ordeal that we actually heard something we haven't heard for a few days: he laughed. It was music. We sure have missed that. The rest of the morning was filled with tests up until 2:00 when they finally let us have a break.


He asked us today if they had done the surgery yet. We told him they had done it on Tuesday. He didn't remember it (thank goodness) and would not believe us until I took a clearer picture of his incision and showed it to him.



They took the chest tube out yesterday. The tube started a couple of inches below the incision and ran almost the all the way to the top! He screamed when they yanked it out, but can you blame him? That's a lot of tubing.

Thursday, June 9, 2011

Wheel Chair Ride!!

This is the Ultimate Ride!! Way better than Disney Land!! I have to work for it though. They make me pee:)

Feeling Better!!

We are feeling much better!Here is my day nurse. His name is Mike! He makes me take walks:( I get a sticker every time I go for a walk.

Wednesday, June 8, 2011

Recovery

We have kind of left everyone hanging. Sorry. This is the first time Ashton has been awake for an extended period of time. When he was sleeping, it kind of all hit us at once and we realized how exhausted we were. We have been sleeping almost as much as he has. They let me go back with him as he fell asleep, but not without making me look like a goon.


Surgery went without a hitch. They found a mitral valve that had been damaged due to the existing anatomy of the heart. They fixed that, too.

He slept after surgery, clear through the night, and well into most of the day. This morning they removed the tube going into his femoral artery. This afternoon he got to lose the line into his carotid artery; he hated having both of these pulled.




He still has a chest tube which is draining fluids. He won't lose that until tomorrow. He has to carry a box around with him until they get this removed.



This box is acting as a vacuum to drain all the fluids from his chest.


Now he has a zipper running down his chest. Maybe when he wakes up he will want to see if it works

Tuesday, June 7, 2011

In Surgery

They took Ashton back to surgery about 2 hours ago. They Have him hooked up to the bypass machine, which is now pumping his blood for him. They have him opened up, things look just fine. that is all we have for now.

Monday, June 6, 2011

Funny things Ashton Said today!!

After getting his blood taken, Ashton said, "When am I going to get my blood back?"

A few minutes after that he said, "Blood is made from water and a few other ingredients!"
Ashton is our rock here!! The strong one! Everyone he has met here will ALWAYS remember him.

*Sorry if the grammar, spelling etc. is wrong. I am tired.


Reasons we are truly Blessed!!

1. Grandpa Ron and Grandma Karen showed up today!
2. They caught Ashton's heart problem at birth,diagnosed him at age 3.
3. Dr. Susan Ethridge Pediatric cardiologist from Primary Children's Medical center kept close watch over Ashton for 4 years.
4. When the problem became severe. Dr. Ethridge referred Ashton to, AND WAS ACCEPTED, by one the very best heart surgeons in the country.
5. Ashton is receiving a Septal Myectomy. Which is considered to be the "GOLD STANDARD" treatment for Hypertrophic Cardiomyopathy.
6. Our entire ward, families and community came together to raise the funds for us to be here!
7. We are now #1 on the Ronald McDonald house waiting list. We were #16 when we arrived here. Which hopefully means we can move there tomorrow.(Grandma and Grandpa Karen too).
8. We have met some amazing people while here and learned from them.
example: A group of about 10 Amish people visiting a beloved one. Many Muslim people, with their headdresses. Ashton played with one little Muslim girl at a park.
9. We have seen beautiful chapels, etc. from other faiths.( See photos)





10. My mom and dad Peterson who are with my special boys; Tyson, Wesley and Wyatt. Whom we miss so Much!!

Shauna's Thoughts

Okay tomorrow at 6:15 is the big day!!! We had to scrub Ashton's chest for 10 minutes tonight, with special soap and 10 minutes tomorrow before we leave for the surgery. He hated it and made us set a timer.
I have been fairly proud of myself for holding it pretty much together but today I didn't. They were taking blood from Ashton(both arms) and he was screaming bloody murder!!!! Part of the problem was that he was STARVING!!! He could not have anything to eat before this test and it wasn't until 11:00. Well, anyway after we got out of there I was MAD!!! VERY MAD!! Why is this happening to my little boy? Why him? He has always been such a kind hearted little one. Why am I not blogging the perfect life like many other blogs? Why am I blogging about my son's life saving heart surgery? And not bragging about vacations, new homes, the thread count of my new sheets(people honestly take the time to count the threads)!!!!
Then I saw many others going through so many heart breaking situations. Right before my own eyes!! It was like our father in heaven heard me, unimportant/trivial me,and felt my pain. And right then and there, I remembered.....
" My son/daughter, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;

And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes.

Thy friends do stand by thee, and they shall hail thee again with warm hearts and friendly hands.

Thou art not yet as Job; thy

friends do not contend against thee, neither charge thee with transgression, as they did Job.

Meeting Dr. Dearaini Ashton's heart surgeon

Today we met Dr. Dearaini Ashton's heart surgeon. We were so impressed!! He was so confident and talked to us about everything!! They will be going through the aorta and cutting the troublesome part of his heart out. Dr. Dearaini and the Mayo team has performed 2000 adult septal myectomies and 150 pediatric septal myectomies. So, he was very confident which made us very confident, that Ashton is in the very best hands!!! Here is a picture of Ashton and his surgeon. This is a before shot. We will be posting an after shot too!

Day before the surgery

We spent the entire day at appointments getting ready for Ashton's surgery.

Saturday, June 4, 2011

Ashton's tour of the Hospital

The staff here are ALREADY amazing! They have a program called "Child Life." The nurses there are only for pediatric patients. They introduce the child, the brave dad, and the ALREADY crying mom to the hospital and what's going to happen. Then they stay connected to us the entire time we are there. Today they gave us a tour of the ICU, the floor he would be on and talked to him about what tubes, etc are going to be hooked to him. He was very brave, but he admitted to being a bit nervous a few times. We were very proud of him. He was very knowledgeable, and the nurse was impressed with the amount of understanding he showed. He had some very grown up questions and answers. We wish we were as confident and calm as he is. He is doing great!


We have to admit that by Child Life talking to Ashton, mom and dad are feeling much better about everything

St. Mary's at the Mayo Clinic

This is the hospital where Ashton's surgery will take place. It is an amazing,

VERY peaceful and beautiful building. The green EVERYWHERE here in Minnesota is unreal,so beautiful.

Friday, June 3, 2011

Update

Haven't posted for a while. We are in Minnesota. It's hot and muggy. Hard to believe them when they tell us they had snowstorms barely a month ago. It was like 92 today. We are, however, enjoying the great expanse of greenness. Beautiful!

Anyway, got our rental car to get us around for a day or two. As Shauna was crawling in she pointed out a weird smell. We looked around and realized that the car was fairly new, so it must be a new car smell. Something neither of us are familiar with :)

Here's a photo:


We spent the following few hours at the zoo.


This morning we took Ashton to Mall of America. There was a Nickelodeon Universe in the middle. All of the rides were not recommended for those with heart conditions. His special little heart was broken. We took him to Build-A-Bear instead, and he LOVED it. He has been missing his dog, Pughetti, and cried a little as we were leaving here. He got a dog at Build-A-Bear, and named it Doggy.


We are now in Rochester, Mn, staying right across the street from the hospital where he will be getting his surgery. It is St. Mary's, which is about 10 blocks from the main Mayo building. The hotel is a great old hotel with the fine Norwegian name of Fiksdal. Our room reminds us of Mike Brady's office. All we need is olive green shag carpet. This will be our home until a place at the Ronald McDonald house opens up. We were number 16 on the waiting list. We talked to a lady who said it goes surprisingly fast, though. I will have more pics up soon. I have yet to take any of the hospital or hotel.

Keep checking back.

Wednesday, June 1, 2011

WE ARE SICK OF SITTING!

All day either riding to airports, sitting and waiting for planes, or sitting on planes. Ashton had a blast, though. He spent almost the whole ride looking out the windows of the airplane. He was amazed that we were up above the clouds, but also a little disappointed that the clouds looked the same from the top down as they do from the bottom up.






Leaving

Up early this morning. Bump around the house for a while and then start getting ready to make it to the airport shuttle by nine. Plane leaves at noon Nevada time. Full day of travelling/sitting in airports. Arrive in Minneapolis this evening.

Ashton's first appointment is Monday, but we need to get there and get settled. Hopefully there is room at the Ronald McDonald house there. Plus, we want to do some fun things with him so that the whole trip isn't about having doctors pick on him.

I will be posting updates and pics soon. Keep checking back.

Oh, and if anyone saw the article in the Spectrum about the young lady who needs a heart transplant, she has the same thing Ashton does. Her family has also set up an account at Southwest Community Credit Union. See her blog at http://abbyninja.blogspot.com/