Austin's November surgery was a bust. The doctor (Dr. Grey) who tried to do it was so disappointed. He did not want to have to put Austin on the heart and lung machine again to replace the valve, but he knew he had to cut him open this time. This doctor was amazing! He went to work on a plan where he would open him up, put the valve in on a beating heart and close him up. He spent 3 months figuring out his plan. It was amazing, but scary.
On February 16, Austin went in for his pulmonary valve replacement. It would be done with a new, hybrid procedure. The cardiac surgeon would be there to open his chest.....it would be the the lower half of his sternum this time and the incision would not be as long as usual. Then he would cut open his beating heart right below the pulmonary valve. Then they would turn off his pacemaker/defibrillator so it would not go off during this part of the surgery. Then they pumped him full of oxygen. They saturated him to 300%. Then they stopped his breathing and they inserted a sleeve through an inch long incision just above his belly button. Then Dr. Grey inserted through the incision in his heart the new valve and stint using a catheter and using the sleeve as his guide. They did some other things to secure the valve etc, but I don't know it was too much info. After that, they turned his breathing back on and he wouldn't have brain damage because they had saturated his body before hand. Then they turned back on the pacemaker/defibrillator (ICD) and did some other work. When it came time to close the incision in the heart they had to turn the ICD back off because the tool they use to stop the bleeding can set it off. They closed the incision in the heart and in his chest and placed a chest tube. The surgery took 4 1/2 hours.
The doctor said it turned out exactly as he had rehearsed it in his mind. He said it went to well and it was so secure they were going to try it out on other patients! We were so happy. Austin was in ICU for 3 days and then on the floor for one. Then they sent him home for a 6 week recovery. He was pretty sick for about 2 weeks and then he started to get better. He could not lift anything over 5 pounds for 6 weeks. He lost about 15 pounds, but it is back on now. The doctors learned a lot from this. Austin's nerve damage in his chest was more than they thought. It is because they usually don't open just that lower part of the chest where the muscles are different, thus causing more damage than normal. With time though his nerves have gotten better and they should continue too. This valve should last 10 years. They told him he should expect 6-10 more surgeries in his life time, but they were very hopeful (as this surgery proved) that technology would just get better.
Austin also had a panic attack in the ICU and right before the surgery. He had a bad one in his surgery in November too. They diagnosed him with PTSD, which is not surprising, considering all the trauma he has been through in his life. He is currently in counseling and doing very well. I think he started with the PTSD in 2008. Wish they had known earlier. They learned that too since then, that kids with as many surgeries as Austin often suffer from this. I am glad we have a reason for his anxiety and he is getting help now.
We were and are so grateful for the prayers that were offered in his behalf and for the faith that was given in his behalf. I know the Lord heard and answered.
On February 16, Austin went in for his pulmonary valve replacement. It would be done with a new, hybrid procedure. The cardiac surgeon would be there to open his chest.....it would be the the lower half of his sternum this time and the incision would not be as long as usual. Then he would cut open his beating heart right below the pulmonary valve. Then they would turn off his pacemaker/defibrillator so it would not go off during this part of the surgery. Then they pumped him full of oxygen. They saturated him to 300%. Then they stopped his breathing and they inserted a sleeve through an inch long incision just above his belly button. Then Dr. Grey inserted through the incision in his heart the new valve and stint using a catheter and using the sleeve as his guide. They did some other things to secure the valve etc, but I don't know it was too much info. After that, they turned his breathing back on and he wouldn't have brain damage because they had saturated his body before hand. Then they turned back on the pacemaker/defibrillator (ICD) and did some other work. When it came time to close the incision in the heart they had to turn the ICD back off because the tool they use to stop the bleeding can set it off. They closed the incision in the heart and in his chest and placed a chest tube. The surgery took 4 1/2 hours.
The doctor said it turned out exactly as he had rehearsed it in his mind. He said it went to well and it was so secure they were going to try it out on other patients! We were so happy. Austin was in ICU for 3 days and then on the floor for one. Then they sent him home for a 6 week recovery. He was pretty sick for about 2 weeks and then he started to get better. He could not lift anything over 5 pounds for 6 weeks. He lost about 15 pounds, but it is back on now. The doctors learned a lot from this. Austin's nerve damage in his chest was more than they thought. It is because they usually don't open just that lower part of the chest where the muscles are different, thus causing more damage than normal. With time though his nerves have gotten better and they should continue too. This valve should last 10 years. They told him he should expect 6-10 more surgeries in his life time, but they were very hopeful (as this surgery proved) that technology would just get better.
Austin also had a panic attack in the ICU and right before the surgery. He had a bad one in his surgery in November too. They diagnosed him with PTSD, which is not surprising, considering all the trauma he has been through in his life. He is currently in counseling and doing very well. I think he started with the PTSD in 2008. Wish they had known earlier. They learned that too since then, that kids with as many surgeries as Austin often suffer from this. I am glad we have a reason for his anxiety and he is getting help now.
We were and are so grateful for the prayers that were offered in his behalf and for the faith that was given in his behalf. I know the Lord heard and answered.
Waiting room. Morning of 5:30 a.m.
Pre-op exam. All smiles.
Dr. Grey the miracle man.
Playing cards during the LONGEST 4 1/2 hours ever.
We get to see him for the first time.
This chest tube caused him so much pain. After we were home, he had a lot of pain where the tube was. We found it had given him a hematoma under the skin.
Day two in ICU.
His nurses loved him. They enjoyed having an older patient for once that could talk to them. He had it at the Children's Hospital where he has had all of his surgeries.
Working on that dang chest tube that caused so many issues.
Getting up and going for a walk for the first time.
They had these signs placed around the floor to motivate kids to walk. Austin thought they were hysterical. They helped him walk too even though he is older.
Breathing treatments for lung problems. They couldn't get him off oxygen.
Talking on the phone to this girl he was dating. He is now engaged to the said girl.
Brother comes and takes him for a walk. I love this.
Maylin was not allowed on his floor because it was RSV season, but the security guard let us sneak her to the lobby right outside his floor. He gave us 10 minutes.
Brother has your back......love this pic.
A mural inside the hospital. Austin loves nothing more than his Savior.
He is pretty super!
Getting some of his IVs out! He hates IVs.
Finally on the road home. We always take a pic of him as we are driving home from the hospital. He is such an inspiration. We love him so much.
Nights were really rough. We had to set the alarm for every two hours for his meds. He could not get comfortable and really struggled. He put him upstairs in Kenzie's room so he was close to us and I could help him in the night. He slept a lot on the couch during the day. This pic was taken about 2 weeks post-op. He couldn't wear a shirt for the first week. He loved sitting in the sun and napping.
Bed time. The least favorite part. We finally started giving him Tylenol PM and that really helped.
My parents came to see him 2 weeks post op. They love him so much.
Alex was getting his Eagle Scout award soon so my mom brought his blanket she made for him.
My sister's sons came to see Austin for a few hours the same time my parents came for a visit. It was fun to see them all. Some of them Austin hadn't seen for 4 years. They live all over the U.S.
His battle scars. They dotted line shows where the worst nerve damage was. They doctor's marked it at post op 4 weeks to make sure it was getting less and less over time and not more and more. He looks so good.
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