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Friday, July 22, 2011

Been a long time.

We have been neglecting our posts. He has been doing a little better day by day, so the feeling the urgency to post has been absent for a while. Just because we know how he is doing doesn't mean that the rest of you who have been following do.

Here is what we have noticed since the surgery:

He doesn't sweat as profusely during play or sleep.
He has an almost inexhaustible energy supply.
He doesn't like all the attention he has been getting from everybody asking how he is doing.

Regarding the last post, we have changed the time of day we have been giving him his medication and he seldom has headaches and I don't think we have seen him vomit for quite some time. I don't know if this is from the fact that the medication time is different (which makes sense because he now gets it with a meal) or because he is getting stronger over time. Whatever it is, we will keep doing it.

Thank you all for the continued support.

Friday, July 1, 2011

Be as thou as a little child

From Shauna:
I have been struggling a little bit with Ashton's daily headaches and vomiting.Combine that with Wyatt and his 3 baseball teams. The frustration and anger with a coach who feels winning is the ONLY important thing no matter what it teaches his players. I was talking to my mom about a situation on one on Wyatt's tournament teams, very STEAMED!! When Ashton lying on the bed after severe headaches and vomiting said, "Mom, life is good, really good!" Wow!That hit me like a ton of bricks. I have been upset over such worldly, materialistic things like my son getting to play every game and every tournament. What an insignificant thing in the grand scheme of things to worry about!!!! It took a little child to remind me that, "Mom, life is great! Really great!" No wonder we are taught to be thou as a little child! We love Ashton and all that his trials teach us. He is still soooo far from well!! Please continue to pray for us!!!! I worry about him being well enough to go back to school. We need our jobs! We need him to get well!

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:)