Our 19th Post; Since we've been Home

His John Deer from Clark and Alisha. Loooves it.

I know its been a while since I posted. Since leaving the hospital we have been home trying to keep Ayden from running all over the play. Hard for a 4 year old. He needs to be on a very low activity schedule for now until his incisions heal and the rest of the fluid in his lung, that had the whole, heals. We saw our Cardiologist yesterday (Dr. Kao) and got a good report. Although Ayden is swelling again, his surgery was a success. Everything seems to be working fine and she couldn't see any problems from the Echo we took yesterday. The swelling she believes is from Ayden's body thinking there is still something wrong so it swells as a defence mechanism. Its just taking his body longer to get use to having half a heart and more fake parts. Other then that he is doing very well. Grumpy from being swollen and all the medication he is on. Plus making him sit around the house all day isn't his ideal day as a 4 year old.

Cookie Bouquet from his Aunt B and Uncle K

 He says he's going to share with sis

He's got deer season on his mind.

Cardiologist Appointment yesterday

 During his Echo



Our 18th Post, Heading Home

I cant believe this but we are going to be heading home today. This has never happened before. Ayden has done so well even his doctors and surgeons are surprised. Thank you everyone for everything you have done for our family. All the uplifting words help our spirits out so much. We are just finishing up breakfast and waiting for our discharge papers. Already got out final beads for our Beads of Courage necklace. YEAH!!!

I just love this smile. I hate when I dont see it for a long time but love when it come back.

Our 17th Post, Its been busy and exhausting.

MONDAY

Yesterday we started early with the traumatic experiences for the day.

6:00 AM Ayden had all his chest tubes out and we also got the Central line out as well. Ayden was even unhooked from the pace maker but just not the wires to it. He still has those in his chest. For all this he had to be drugged heavily.

Also on that day we had to have a Wound Care Specialist come and see us. Ayden's skin has decided to become allergic to the tape that they use for surgery and afterwards and he has broken out. He also has a huge sore where the pace maker box was taped down. So we had to take all the tape off and redress everything and get on some steroids.

TUESDAY

Tuesday morning Ayden's gas came back lower then they expected from his blood work taken earlier. Usually to get blood from Ayden they would just get it from his central line so he doesn’t have to get stuck. Well since he got his central lines out this means he had to get stuck. Not once but twice because his blood was clotting. UGG!!!!

But to reward him we took a trip off the Cardio Unit in a wagon. First stop was outside, maybe hoping he could escape. Then on to the caterpillar; next stop - of course - the cafeteria. He wanted to see all the food. Fun stuff! Then he went to the playroom and found the trains, tools (where’s the hard hat?) trucks and even bowled!

By the time we go back to our room they wanted us to pack up and move out of Cardio and up to recovery - so excited! This is a BIG step closer to leaving here.

All packed up and ready to go to recovery

To recovery floor we go. Our new room is 617D!!!

WEDNESDAY

This morning I have already talked to the nurse and she was going to be talking to Dr. M about getting these pacers out ASAP. If we get those out there is a good chance we could leave here TODAY.

I can’t believe it.

Our 16th Post, No Holding Him Down.

It's Saturday, I think and I am so sorry for the time between my last post. It has been a couple of eventful days with Ayden. He is still looking great, especially after his blood transfusion he had yesterday. It brought back his nice pinky color. He is also on no oxygen at all and breathing fine. He still has a hole in his lung that is causing it to fill with fluid so we keep trying to make him walk to work alot of that fluid out. He hates to walk yet he has been attempting to climb and sit up and get down from his bed. Which is not good since he's still hooked up to about 20 different things. So now Trav and I are on a shift schedule right now since someone, besides the nurses need to be in the room at all time for fear of Ayden breaking free. As soon as I get my laptop up here I am going to work on posting more pictures of him. Thank you everyone for all your prayers and thoughts and positive words.

Our 15th Post, recovery begins.

It's a new day and he is madder then he could ever be. Over the night he slept very well. They were able to take out one of his chest tubes that drain fluid from his lungs. This afternoon they are hoping to take out his RA line which is an IV that goes directly into his heart. As soon as they can get that out he can try to start drinking again. His blood pressure is up and down but we are able to manage that with medicine. He does still have some oxygen running through his nose and he seems to be breathing very easily with that. He still has a drain in for the other lung and a drain for his heart. Not sure when he will be getting that out because he is still drain quit a bit. All in all he looks good. We are just wanting him to rest as much as possible. It's hard for him to do that because his body is already so use to all those pain meds and sidation meds that they don't really work on his for very long. He usually goes thru those meds with in 5 to 10 minutes. I really hope to get pictures up here soon. That is my next thing to do, find a computer and upload pictures. Thank you again everyone for all the prayers and positive thoughts.
Also I was just informed that this blog only send out the updates over night and not everytime I post. Ugh sorry abou that.

Our 13th Post, HE'S OUT OF SURGERY.

He's out if surgery!! 8 hours later and the best part about it is he was able to breath in his own this time. He has never been able to come out of an open heart surgery without a breathing machine. So this is great news. He is getting situated in the PICU for the next hour or so with his nurses. We should be able to go back there to see him soon. He will be sleeping for the next day atleast.

Our Twelfth, still mopping up.

Well he is still doing great but Dr. M is still mopping up. Which means cleaning him up on the inside before they can close him up. He is having to do alot more mopping up then normal just because of his previous surgeries and plus this surgery being so long. We are going on the 7th hour now, but everyone here is still doing good.

Our Eleventh Post, heart is beating again!!

His heart is now beating again and he has been coming off the heart lung bypass. After that they will "mop" up and start the closing procedure. Maybe another hour or so.

Our Tenth Post, nurse came out for another update.

The nurse Cathy came out for another update. Ayden has now been on the heart lung bypass for about 40 minutes now and is doing great. They are now starting to sew close his tricuspid valve and after that they will place the long tube that bypasses the right side of the heart.

Our Ninth Post, Nurse came out

The head nurse Cathy came out to give us an update. They made their first insition at 8am and they are still going through scar tissue. It may be another 10 to 15 minutes before they can get all the way through and go onto the heart lung bypass. But other then that ayden is doing great they said.

Our Eighth Post, Surgery.

They took him early this morning then they had originally planned. He was given goofy juice and his Anastasiologist carried him back to the OR. Ayden didn't have a care in the world. We won't hear from anyone in the OR for about an hour and a half. Still expecting the surgery to take around 5 hours or less hopefully. So far Trav and I are doing good as well.

He had just gotten his "goofy" juice right here.

Our Seventh Post, Pre-ops at Medical City

Pro ops are done. Dr. M wants to start alittle earlier in the morning tomorrow. We are going to be getting to the hospital about 6am and Dr. M wants to get started about 7:30 this time. When we spoke to Dr. M he really seemed confident about this surgery. And it made Trav and I calmer just speaking with him again. We are as ready as we'll every be to get this done and on with our lives. Thank you again for all your prayer and positive thoughts. They really do help Travis and I.

P.S. As soon as I figure out how to post video I will post the videos from last nights Pickin for Preemies Concert where Ayden sang on stage twice. Rock Star Style with his favorite Bart Crow.