Week in Review Oct 12-18

This week we actually have had some FUN. Ashlie gave the little ones her balloons from the hospital and they had a blast with them. Some game was invented that involved jumping off the couch at the same time and grabbing onto the string handles.

We also made carmel apples and tried to make them the "gourmet" way with sprinkes, nuts and chocolate chips on the outside. Didn't work all the way, but very yummy. Maybe we'll try them again before autumn is over and make them smaller this time.

Ashlie had her first post-op visit with Dr. Williams in Pocatello. ( I am so glad we didn't have to drive to SLC for it.) Her incision had opened up a little (we need to watch for infection, but I think it's fine) and keep her out of school for two more weeks, no lifting and try and take it easy (the heart needs time to get used to working normal....we don't want it to over-worked at this point.) Everything sounded great...what a normal, healthy heart should sound like. Hurrah!!!!!

We're Home

Sunday, finally Ashlie's chest tube came out.

She slept for about 4 hours after wearing off the Morphine they had given her. She had a bath (wonderful according to Ashlie) got into brand new jammie pants and slippers and then went for a walk unassisted and felt pretty good. After that there was no stopping her getting out of there.

They let us go Monday after the x-rays still looked good.

She has done amazingly well at home with hardly any pain (only using Ibuprofen or Tylenol). She even wanted to go to achievement day today. We are trying to make her rest a little to allow her heart to heal. She has to stay home for awhile to let everything heal (getting bumped or sick would not be fun), but well visitors are always welcome and will be nice break.

We are extremely exhausted, didn't realize just how much until today; but also elated that everything has turned out the way it has. We are overwhelmed by the blessings we have been given in finding out about this when we did and being able to get it fixed.

Change

I can't sleep for some reason, don't know why.

While Ashlie and Alan snoozed today, I got to hear part of conference. Pres Monson's talk today at the end of the first session sure hit home. Change....it's all around us whether we like it or not we have to accept it. Time can not be turned back or slowed down. Soooo I need to enjoy each moment and not look back or always turn to the future. It's all about now. I don't know if I make any sense and some day when I read this, I hope I can remember.

Pretty deep, huh? Well, it did affect me and hopefully for the better.

Perfection????

The word from the cardiologists is x-rays look great and echo looks great, which means, could it be possible? Ashlie's heart is PERFECT!!!!

Making Progress

Pace maker wires out.....chest tube OUT!

Oxygen staying up most of the time.

Most of all Ashie's spirits up!!

There is a Silver Lining

I feel like I have to ammend my previous post. Things are looking up. After a blessing last night, a restful night for all, and some insight from very smart nurses, we are now turning a corner. Ashlie's chest x-ray this morning showed the lungs looking much better. Her heart looked and sounded swollen, so they did an Echo this afternoon. The report is a totally perfect heart....music to my ears and heart.

Dr. Burch came in and checked her out and played a little with the chest tube; (that really hurts). After he left she had a bit of a melt down (tore off the oxygen, stomped a little, screamed and demanded she go home now. After that she has started going to the bathroom much easier, eating a little, (and keeping it down), and has been able to keep her oxygen up for most of the day. We've had a few smiles (l0ts when brothers and sis came to visit) and even has been able to talk on the phone. I really feel like Heavenly Father recognizes his children's cries for help, however it comes. He knows Ashlie is not happy and we understand it is not going to be easy to get over but it will come.

ROUGH WATERS

We are continuing to work with Ash to get the lower lobes of her lungs to inflate. She won't take deep enough breaths to make her lungs work properly. This makes at risk for pneumonia, not a happy thing with a cracked sternum and ribs. Her fever goes up and down but not too high.
In order to get the chest tube out she needs to be eating a regular diet. The surgeon wants to make sure the milky colored discharge (sorry that's gross, I know) won't leak into her chest cavity when given fats, so for now it stays in. We have started only giving her "easy on the stomach" foods for now. The doctor has also given her something for the nausea and lowered the heavy duty pain killers to ease up on her stomach.
She has gotten up three times today (still has one more today). Sound familiar Lisa Marie? Hopefully tomorrow she will have a little more energy to venture a little further than the bathroom.
Garrett, Justin and Hallie are coming to visit tomorrow and I CAN' T WAIT. I've missed them so. It's hard to hang up the phone when Hallie just wants her mom and dad. I'm glad they are together.

TAKE THE BAD WITH THE GOOD

Throwing up everything you eat.......bad, bad, bad.
Chest tubes....very bad.
Ordering what you want to eat any time you want....good.
Dealing with nurses all day....good when you have such nice ones.

Being away from my sister and brother....beginning to be bad. (We miss them.)
Movies any time of day OR night.....good, (at least for me.)
Finally getting sleep.....very good.
Having a fever...bad.
Having worried parents.....very bad.
Sponge baths....good.
Being in the hospital.....bad, bad, bad.
Getting rid of a central line and cathater.....very good.
Having a good surgeon...very good.
Foot massages....very, very good. (I love love my nurses.)

The Day After

We made it through the night....a long, long night. We were able to get a sleep room across the hall from the PICU. I slept for a couple of hours, then Alan for a few and then me for another little bit (yep, I'm a pig.) Ashlie could not get to sleep with all of the comings and goings in the ICU. It was very noisy. Even from staff members that would forget it was someone's night time, not day time.

Last night she started having bad pains in her lung area on one side, so we turned her to try and let any fluid stop from pooling on the one side. They reviewed x-rays and thought it was all OK. She is continuing to run a fever which makes her a little edgy. She had an awesome nurse, Chad, who took such good care of her through the night. He was able to get her to do whatever was absolutely necessary without any drama and also kept things as dark and quiet for her to get rest. Got to love him! I was doing OK with everything until they had us leave for the hour of shift changes. Now my emotions are not so in check. Got to get tougher, I guess.

Later in the morning we got moved to our own room; what a difference that makes. It feels like the Hilton. Alan and I will both be able to stay in the room. Everyone is awesome here too. She likes the up and down bed and her OWN remote control. They are working with her today to get better breath sounds, getting her up and eating (she is now refusing everything except a little soda.) We had a wonderful visitor today that lifted her spirits even when she didn't want to move. Sister Lynn walked in the room today and visited for a few minutes with her parents. We are totally touched she would take the energy, time and risk with germs to see Ash. She got the only smile we've seen out of Ash since surgery. No fair!!

We know that today sleep, movement and food will make a lot of the not so great things a lot better. Ashlie said she wanted to go home and hopefully we'll be on our way in a couple more days.

SURGERY DAY!

Surgery day started out VERY early for us. We had to get up at about 4:15 this morning to be to the hospital at 6:00. Yep, then we sat around for almost an hour waiting for our name to be called. CRAZY!!!!!
A brave little girl went in to surgery....there were no tears and somewhat of a smile. (She was just glad she could keep her underwear on.)
The surgery went well. She was under for about 5 hours total counting the pretesting on her heart and after.
The actual surgery went as planned. Dr. Burch was able to use a piece of the paricardium sac around her heart to patch the hole and then stitch it together. After they took her off the heart/lung machine, she did experience some arithmia so they put in pace maker wires for a "just in case" moment. She DID NOT have to receive additional blood transfusions and is holding her own tonight, making her own new red blood cells. Amazingly, she has been quite alert (too alert if you ask me) all day, only dozing here and there. She has been persistent to the point of tears, wanting something to drink. She finally won and as a result, they are having to limit her liquid intake for the rest of the night. (This does not make her a happy camper.) We wish she would sleep.
Ash has already won over the hearts of anyone who has been in contact with her. Her nurse did not want to leave her tonight. Sounds typical of ourAsh.

We are exhausted tonight and are hoping for a little sleep. We sure appreciate G-ma and G-pa Beagley who have Garrett, Justin and Hallie and for G-ma Wimmer who came to the hospital. And of course all of the phone calls and worries on our behalf. We'll update more tomorrow and if I can figure out how the computers here work to get pictures on, I'll had some, otherwise I'll do it at home.

The Pre-op, yuck!

Spending a day at the hospital to get ready for surgery is not our idea of a fun day. We went to Primary Children's to have all the pre-tests done for Ashlie's surgery on Thursday. It was OK registering but then kind of went down hill. It was paper work nightmare. It seems no one knew what was going on. We started to think that maybe this wasn't such a good idea after all. Maybe it was a sign that if things weren't going as planned that maybe that was our cue to just go home and re-evalute the options. Each time the paper work would be messed up, a fantastic person would take care of Ash in x-rays or the lab (oh the lab), or in cardiology and it would make everything all right again. THANK GOODNESS!!
While waiting for a cardiologist to read the echocardiogram again we had those feelings of this wasn't such a great idea. Dr. Williams happened to poke his head in and talk to us for a few moments. I am so happy he did. He put us at ease and let us know that yes, we needed to be here, this should not be put off and definitely it is a good idea.

A big relief for us.
Thursday morning is surgery day. We will be at the hospital at 6:00 am for a 7:30 am surgery time. Hopefully everything will go as scheduled. Without any complications or any other findings, the surgery should take around 2 hours. She will be in the ICU until Friday morning.
We are so grateful for all of the love we have felt from our family and friends. It is very over whelming and appreciated. This would be so much more scary without them.