change of plans AGAIN

Well, we went in for pre-op testing yesterday morning. We arrived for our 10am appointment and starting doing everything necessary for pre-op. We did a chest xray and that actually turned out really well. It showed that his chest looks even better than last time we checked! Yay! I was really relieved to hear this since he still has that nasty wet cough. At least we know things are improving! Then we had bloodwork and his INR showed that he's at 3.7. That's really good for him since our range is 3-3.5. A little high for him is preferred to try and keep any clots away. :) We met with the surgeon again, filled out paperwork, got all our arrival/medicine change instructions, and ordered and received the Lovenox injections for the weekend since we had to stop Coumadin before the surgery. While we were waiting for the medicine Dr. Stewart (surgeon) saw us in the hall and said we have to talk. Uh-oh.

We went back in the room and Dr. Golden (cardiologist/cath doc) and Dr. Stewart came in to chat. They said that all the docs didn't sign off for surgery. What?! Apparently they need all six to approve it and they wouldn't. They want to do one more attempt at something before opening his chest.

We now are scheduled to have a heart cath on September 24th. It will be a similar procedure to one we've discussed doing in the past. We haven't done it in the past due to the high risk of something going wrong though. They are going to go in and put a stent in his conduit instead of doing the surgery to remove and replace the conduit. This will open it up from 8mm to 12mm hopefully. There is a big risk in this because 2 years after they put the conduit in it started to calcify. Now there is so much calcification and it is brittle. There is a chance of the conduit cracking or breaking when they're trying to open it and place the stent. If that happens they will either have to put a wrap on the stent or take him directly to the OR and crack his chest after all to replace the conduit and control the bleeding. If they get perfect placement of the stent and it works as they think it will, then we can hopefully buy another year before needing more intervention. If they don't get perfect placement or his stenosis continues, then we will have to look into surgery or something else again soon. We just don't know what to expect from this as far as the longer outcome. The docs did mention that they only expect to raise his oxygen saturations into the 70s instead of the 80s that we were hoping for with the surgery. He's currently in the 60s while resting. We'll see.

All the doctors apologized profusely for doing this again. They explained how embarassed they were and how this just doesn't happen. They've scheduled two surgeries and canceled them both at the last minute just this summer! Their reasoning is that Ethan is "one of the most complex if not THE most complex child that they have". They reassured me that even though he's so complex and they're still trying to constantly figure out the best method to treat him they do know what they're doing. We have excellent doctors who love him and care about him so much! I know it's frustrating for them too but they just want to do what's best for Ethan. Still it's very emotionally draining to get all prepared and set for a surgery only to change it last minute. I also had to deal with taking off work, changing school schedules, people coming in from out of town, etc. Oh well, all that is fixable and at least Ethan can start school on Tuesday now! That's a bright side to this! :)

So with that said Ethan is going to school on Tuesday! He's VERY excited! We had open house this morning and he was able to meet his teachers, see his new classroom, and play with some of his new friends. :)

                                           Ethan outside his classroom

                                       Ethan on the rug in his class

                                               Ethan sitting at a table in his classroom

Then this afternoon we were invited to see the Blue Angels practice air show through Make-a-Wish! We were all so excited and it was a great show! Ethan loved it! He was even able to go out to meet, get autographs, and get pictures with all of the pilots! They were so nice and Ethan had a great time!

                                    John, Callie, and Ethan before the air show

                                           Ethan and one of the Blue Angels pilots

                                    Ethan and another Blue Angels pilot

                                All the Make-a-Wish kids and the pilots after the show

Needless to say, please continue to keep us in your prayers. Please pray that Ethan stays healthy even though he's going to be exposed to all these school germs. Also please pray that plans don't change again and this cath goes perfectly! I would love to be able to have this buy us another year before open heart!