Extended Stay

Jared is out of surgery but things didn't go quite like we hoped.

First issue was that the leaflet was really stuck down, it took a lot of time to disconnect all the tendrils in order to do the "Cone Procedure" to correct the tricuspid valve.  After they completed this and plugged the right to left holes/shunting, they took him off the heart lung machine.  They then did an ECHO and blood work to see how the right side of his heart was handling the change.

His heart muscle was thin and weak.  We didn't realize how extreme his right to left shunting was; apparently only about 38% of his blood was actually going through the right side of his heart to his lungs before surgery.  This explained why he was so "blue".  With the corrections above there was now 100% of his blood flowing through the right side and it was more than his heart/body could handle so they had to go back in.

They put him back on the heart/lung machine and this time he needed two pints of blood (one of dad's and some kind stranger).  The procedure they performed is called the Glenn.  It re-routes all the blood from the upper half of the body directly into the lungs, by-passing the heart.  It sounds terrible but I'm told it is a very common procedure.  

He is tolerating now about 50% of his blood (a 15% increase) flowing through the right side of his heart.  However, it will now take longer to heal.  His heart has been traumatized and is now being expected to work harder, its a double whammy.  It will take time to heal and for the muscle to grow in strength. The upper half of his body is slowly adapting to the change in pressure also.

They have him in a drug induced comma for now, and is being fully assisted.  He will be like this for three to four days and then they will slowly, ever so slowly, start to wake him up.  He will be in the ICU at least a week.  In the hospital at least another week and we will need to be in Boston at least another week after that.  Therefore, we will be here about two weeks longer than we thought, but first he has to get out of ICU.  We are just taking baby steps forward, one day at a time, dealing with whatever comes our way next.  

He is far from being out of the woods yet.  I read to him this morning, massaged his feet and cried a bit.  Chris and Sue are headed over for a bit and I'm going to take the rest to the hospital playground we found, looks like the rain has stopped for the day.  

Thank you for all your prayers, forgive me for not responding, I'm in survival mode.  Please keep the prayers coming and I'll update when there are any major changes.

Chris FB Post:

Sep 5, 2012, 2:44 PM

Jared is doing well. He passed the 12 hour point after surgery with no issues, which is good news. An IV was removed from his heart which was monitoring pressure and his ventilator was reduced a bit. His skin color is fantastic. Keep praying, it is working.

Sep 6, 2012, 12:01 AM

My sister and I just finished visiting Jared. He's holding steady, which is a very good thing. If all stays the same, they will start to adjust his meds to allow him to wake up a bit Thursday. The transition from a comatose state to fully awake must be done over time to reduce the stress on his body. This is still great news.
Please keep praying. Thank you all.

Sep 6, 2012, 12:51 PM

Jared is doing great. They stopped the paralytic at 11am this morning. They said he would start moving around in 1-3 hours, but not be fully awake because he is still heavily sedated. Tina and I decided to go and eat some lunch and maybe do some laundry. Tina just called the nurse and of course he actually woke up shortly after we left and asked for water. Since Jared is still intubated, I guess the nurses are great at figuring out what kids are asking for. He went right back to sleep after asking. This is fantastic news. Jared is a strong kid. The nurse is contacting the doctors and they may move up the extubation. Keep praying!