Surgery is finally done....

Colin finally got out of surgery around 7:30 pm. It was another 6 hour procedure. Dr. Bacha had to go into both the front and side incisions again to get out the clot and gather the collaterals. He did end up shunting those collaterals to Colin's aorta. Although this doesn't help lower the right ventricle pressure, it will help the collaterals grow that are off in the lung. Then in a year Colin will have another surgery to hook them up his heart directly, as they tried to do 2 weeks ago. The shunted the collaterals because the believed that they would clot again because they are so small. Colin is looking very pale right now and bleeding a lot because he is on a lot of blood thinners so he doesn't clot. He will be getting a blood transfusion soon. We will update more tomorrow on the progress.

A smile.....

Today, we got Colin to smile quite a bit after the drugs wore off after the cath. I was able to get a quick video of him smiling as you can see. Have you ever seen a child with a breathing tube down his throat smile? With all of this going on, he is still in a good mood.

PS - They keep saying that the red dot on his head is getting smaller and will go away. It better......

Surgery Update.......

Well it is official that the surgery will be tomorrow to remove the clot. We just spoke with Dr. Bacha and they will remove the clot and either hook it back up or put a shunt in. Yes the shunt doesn't reduce the pressure in the Right Ventricle, however it will help the collateral arteries in the lower left lung expand as it will provide higher pressure to "stretch" them out. The other drawback is they would have to complete another surgery in 1 year or so to the hook them back into the heart and remove the shunt. That will be a gametime decision by the doctor. They will being doing a cath while they are doing the open heart. The other issue is he has to look weather he should go through the chest or back or both.... I will post again tomorrow when final decisions have been made.

Well we hit a big pothole in the road......

Colin is out of his cath and doing well. He was in there for about 2 hours. It was much quicker than we expected so we knew something was up. They noticed that a bloodclot formed just past the conduit that they put in during the surgery 2 weeks ago. They are not sure exactly why it clotted but do have to do something about it, soooooo, he is going back into surgery tomorrow morning to remove the clot. They are also going to either do a cath during the surgery or a day after the surgery. That is to be determined. We have not yet talked to Dr. Bacha yet but he was in the cath lab when it was completed. He had another surgery to go to, but will stop in later so I will have more specific details later. As our Syracuse Dr. mentioned, we hit a pothole but we have not bottomed out the car yet.............

Quiz of the day.......True or False......Colin has had more drugs go through his body than Keith Richards, John Belushi, and Eric Clapton combined?????

Wednesday Update......

Sorry for the delay in the updates. It has been a crazy few days. Well Colin just went back to the Catheterization Lab beacuse they noted in a lung scan that there was very little, if any, blood flow to the lower left lung. They are going to go in and try and open the narrowed vessels. The doctor said that this is a riskier cath due to the extent of work that they are going to do, and there is the possibility of tearing an artery, which would require immediate surgery. The good news is Dr. Bacha will be on standby to do so. Hopefully they can open the vessels up to allow blood to the lung so that it can reduce the pressure on the lower left side. I will update as the day goes on.

Still on the Vent....

Colin is still hooked up with the breathing tube. They completed the bronchostomy yesterday and did find a lot of mucus plugs which block the air from fully getting into his lungs, however they did also note a compression on the left lower bronchus. They were trying to get a CT scan of the area to see if it is because something is pressing on it or if it is just inflamed. If something is pressing on the area, there is a good shot they may have to go in and move whatever it is. Having said all that, his lung looks 100% better than it did yesterday morning and they continue to pull out good mucus plugs. A CT scan is scheduled for tomorrow so we will update then.

Another Step Back......

Well yesterday the CPAP machine did help open Colin's lower left lung lobe, it closed again overnight so they decided this morning to put the breathing tube back in temporarily. This time the tube is going down his mouth. Right now they are getting ready to bronchostomy. They have been pulling up a lot of junk from the breathing tube. We will keep you updated on todays events.

On another note - Please send some of your prayers for a child in the next room to us in the ICU as he was just put on an ECMO Machine, which is a portable heart lung machine.