MAYLIN2007

We slept great last night. It was wonderful, however we woke this morning to Austin patiently waiting for us. He said he had been awake since 4 with terrible pain, but didn't want to disturb us. Okay, is he sweet or what? But, man, we felt terrible. We told him not to do that again. He is so happy to be home and is doing well. We have the medicine schedule all set up, his bathing (sponge bath) schedule down and he figured out how to do his own shirt. He can only wear button up the front ones, but has figured out how to do it one handed. We have to still help with pants and socks, but the shirt is a TERRIFIC thing to accomplish. He has taken two naps today and in between people have visited. His class from school came....he loved that. He goes to a private school, thus the small class size. Another friend also came after nap #2. He loves being with his family. We love having him with us too. Some great neighbors and friends decorated Maylin's room (that is where he is staying un...

Pictures and update to follow. Too pooped to post! Except HE IS HOME!!!!!!!!!

Austin's 3rd surgery was completed tonight at 7 p.m. It was a little over 3 hours. The doctor said every thing went well and said Austin must have angels looking out for him because the lead the surgeon put in during his last open heart surgery worked perfectly. They were worried since one had never been placed like this before and since it was sewn in, they couldn't change it. I know he did have angels....thanks to all who prayed for him. We put balloons on all four corners of his bed so it would be like a parade down to surgery. He was embarrassed, but actually it made the trip to the OR more relaxing. Here are pics of : waiting for surgery, the trip into the lab, back to the room after recovery and in his room. We are so excited that we are rounding the last lap of this very long race! If all goes well through the night, he will get to come home tomorrow. YIPPEE!!!!        

I feel like I have already done this. Could it be another week already? Okay, it actually feels like an eternity. We are out of ICU and on the surgical floor, again. Surgery for the defibrillator is scheduled for Monday afternoon. Hey you stole my drink!

Hard day today for Austin. His bottom half of his lungs have collapsed again, he has a fever and few other slight problems. Mainly, he is tired of it all. Jay and I are exhausted. Maylin is struggling. She said to me yesterday when I got home from the surgery, "No mom, just grandpa." How do you like that? Alex has cried all day today. I had him come up to the hospital and they were trying to get Austin to stand up. The nurse had Alex hold some of his lines and tubes. After a few minutes, Alex said, "Mom I can't take seeing him like this. I want to go home." This is what started the tears. Kenzie is helpful, but has a hard time at night. That pretty much sums it up. No new pictures. These were taken a few days back. Austin looks pretty bad this time. Will post some in a few days when he looks a bit better.

After a 5 and 1/2 hour surgery, Austin has a new valve. He also has two defibrillator wires. Due to a lot of bleeding, he was still on a ventilator for 3 hours after the surgery. Jay and I got to hold his hand when they took it out. He looked at the doctor and said in a whisper. "Thank you." The doctor said to me, "I can tell he is a very good boy." We will watch and wait to see how his progress goes. Surgery is scheduled on Wednesday to install the defibrillator and the last wire. Thanks again for every one's support.

Had an echo this morning before the difibullator surgery. Found the value repair didn't work. Difibullator surgery on hold. Open heart surgery number 2 is being scheuled. Not much else to say.

Today started out great. Austin felt better than yesterday, he ordered a custom built pizza, watched a movie, had a few friends up, and I gave him his sponge bath...okay that wasn't fun for him, but it made me feel like I could take care of him again and shelter him from the world. I missed having him be my baby. There is no greater joy for a mother than to care for her children. He is totally dependant on me. He hasn't been for a long time, well since his last surgery. I like him being independent and I am sad when he has to have my help getting dressed or putting on his shoes, but for a short while, it brings back the sweetness of when a child needs their mama. This afternoon the surgeon and 3 cardiologists met with us. Two of the cardiologists will be doing the surgery tomorrow. They met with us to tell us the concerns they had with putting in the defibrillator. The biggest concern comes from the surgeon. When they do the surgery tomorrow they have to put one of the lead wir...

We are out of the ICU!!!!! Woot Woot! We are now on the floor of the surgical unit and guess what? Since we had the same surgery date as last year, I guess fate had a hand in keeping things the same, for we now have the same room as last year! Crazy isn't it? Austin is so thrilled to be out of ICU. He gets to walk. He can't go far due to his telly (portable heart monitor) and he is to tired and weak to really go anywhere, but heck he was thrilled with a lap around his room and a walk to the front of his nurse's desk. His friend came to visit and accompanied him on his "big" walk. All of my posts during this time have been pretty depressing, so tonight I thought I would share some of the funny things. Isn't it great how life can be hard and horrible, yet somehow humor finds its way in, to enlighten the spirit? You are all probably wondering why I took and posted a picture of whip cream and strawberries. Well these two things (actually cherries, but the hospital...

Once again, I can't even begin to tell everyone how grateful I am for all your kindness. Everyone has been so loving and supportive. I tell Austin every day who has called/posted/emailed and what they have said. Austin had a very good day today. They were scheduling the surgery for when he was stable and when the surgeon was available. Today we learned that he will have the defibrillator installed Wednesday. The surgeon will meet with us tomorrow and tell us all about it. Today they finally got Austin's lungs inflated, which meant that he was able to come off oxygen and they got all his chest tubes out. These are HUGE accomplishments. Austin has been very sad since he heard the news about the second surgery. He feels like he is being pinned, glued and band-aided together. He was so hoping he would be home by Wednesday instead of having another surgery. He keeps feeling like something else is going to go wrong and that he will never get to come home. Today he said he has worked ...

From my title I guess you can tell things aren't going well. Austin had a run of irregular rhythms in the night.....18. This is where the ventracle takes over and doesn't let the rest of the heart beat. This can cause him to die suddenly. So, we are having a difibulator installed in his chest. Sucks.

Austin is more awake today. You wouldn't think so by this picture. He is ornery today. Wow. Guess I can't blame him, poor guy. He is doing very well. No info yet on the value repair. He has been very nausea. Throwing up a lot. They gave him some thing to help, but he broke out in hives. They gave him benadryl and the hives are gone. He is itching a lot. His poor skin is just raw in areas. They gave him something for that too and we are waiting to see if it helps. We are facing a few challenges today: high blood pressure and no breath in the bottom part of both lungs. They will begin breathing treatments to see if they can help that. Last year his lungs did the same thing and his lung collapsed. This year they aren't taking a chance, thus the treatments. Sorry this is short. Got to get back in to ICU. Just needed a break. Thanks for all your concern and prayers.

Austin got out of surgery at 7:30 p.m. It was a 6 hour surgery. We were able to see him a little after 8. He is doing well. He is pale and swollen, but he looks good. The surgery was stressful. We will not know the outcome for months. Let me explain. To those who think this update is to personal, I am sorry, but we have family all over the country who use this blog as an update tool. Going in we knew we had 2 choices: Try to repair the value again, but this time with a ring or replace the value if the ring didn't work. We found out right before the surgery that the value replacement may involve a pacemaker too. During the surgery they told us the ring was going in nicely. We were thrilled. But about 1 hour later, the surgeon came in looking frustrated. He was talking to himself, had his head gear dragging behind and he took us into a private consultation room. My heart hit the floor. He told us he got the ring in just fine, but when they pulled him off the heart and lung the valve...

These pictures are really random. They didn't happen at the same activity or even on the same day. They are just some of my favorite shots that I have taken lately. I love my yard. I spend a lot of time in it. I love to go out in the evening when it is cooler (okay, when I can stand the heat)and weed, look, smell, marvel. Here are just two of my very favorite flowers in the yard. Some of my MOST favorite have not bloomed yet. My Hollyhocks just bloomed, but I don't have a shot of them yet. They have so many memories for me. I remember my Grandma T. taking an old wooden clothes pin, painting a face and hair on it and then sticking it through an upside down hollyhock so it looked like a dress. I would then play with the little clothes pin/hollyhock dolls for hours. This first picture has to be my all time #1!! It is of Maylin and Austin in time-out. What did they do? Well, it was really Austin, but he taught the naughty trick to Maylin so both needed a few minutes to think about ...

I know I have blogged a lot lately. I guess I am trying to fit in all the pictures of the activities we have done before Austin's surgery. For me, it is a way to keep track of what we have done to help with journaling and scrap booking. I know it was my b-day a couple weeks ago, and I appreciated all the well wishes on this very dreary year! I never got to post pictures of my celebration so here they are.... Jay had the kids decorate my car. Lots of steamers coming from the back of the car and lots of writing on my car, "Honk! She's 40." "Over the hill." "Our mom is hot." etc. Also all the windows on the front of the house had some message. There is one window pictured below. Aren't they sweet? Just what I wanted the whole city to know how old I am! Maylin enjoyed the cake. She smeared her fingers through the frosting. We spent the day at a local garden that had amazing/weird sculptures in it. We also ran through the dancing waters. Maylin was ...

We met Nate and Em and Tiffany and Eliza at a farm today. We had so much fun seeing the animals, visiting with each other and feeding the ducks. It is so great to see how these girls have grown.