April has been a full month for us. We had some heavy moments, and some every-day-amazing ones. (Hint: the pictures are from the good ones. Hah.)

It started on the 3rd, with a Surgical Consult in Atlanta. We got to meet Chase’s surgeon, and he went over the pro’s and con’s of the two surgeries we are considering.

Pause for a little back story: there are two possible fixes for Chase’s heart. The first one, the Rastelli, has been the go-to procedure for years. It is a faster, simpler procedure with almost no mortality associated with it. There is also a lot of long-term data on Rastelli patients. The down side to this surgery: it requires several further surgeries, and I am not really loving the long-term prognosis. The second surgery, the Nikaidoh, is newer. It is a longer, more risky procedure, but it requires less surgeries in the long term. (In fact, it is possible that further procedures could be done with a catheter instead of surgery. Barring any complications, of course.) There is not as much long-term data, though. Needless to say, it’s a tough decision.

Anyways. The surgeon discussed the issue with us (although most of the information we already knew, since we haven’t been sitting idly by as far as researching goes.) He made his official recommendation: the Nikaidoh. He’s one of the more experienced surgeons in the country with this procedure…and to date, he’s only done six. We were a bit disappointed that we didn’t get anything concrete (like a time frame) especially since it’s a bit of a drive into Atlanta, but overall the consultation went well.

Then, we had Chase’s monthly cardiology visit on the 9th. Dr. C was very impressed with Chase – his saturation levels are still hanging out in the low 80’s – high 70’s (although the nurse was able to get a reading of 85 – yay!) and he is growing and gaining just like a “heart healthy” baby would. His color is great, his energy is up, and he’s overall amazing. (That last part might just be my interpretation, heh.) After we got all of the gushing out of the way, Dr. C suggested we start thinking about setting a surgery date. His reasoning was this:

• Chase is six (almost seven) months old, and his heart will not grow significantly between now and one year (which is the latest they would like to do the surgery.) Therefore, there is no real benefit to waiting.
• Chase is now healthy and happy. His recovery time would be potentially faster than if we were to wait until his health “started to go downhill”.
• Flu and RSV season is over, limiting the chance that he could catch either while in recovery.
• Right now his surgery is considered “voluntary” (as apposed to “emergency”. This surgery must happen at some point, so that part isn’t voluntary, unfortunately.) This gives us an opportunity to chose the date and prepare ourselves, as opposed to being sent up there without notice in an emergency situation.

We told him we would want the surgery to be in June, and he offered to send the notice up to Atlanta immediately. (The summer slots go quickly, as all of the school-aged children prefer not to miss school.) Luckily, Chase is doing so well that Dr. C doesn’t feel anything will change with his health to force us to go up before that.

Then, on April 16th, we heard from the scheduling team in Atlanta. We talked for a bit, they asked us what we had in mind, and we quickly decided on a date: Friday, June 14th. (It almost seemed too easy. Shouldn’t there be more to booking your child’s open heart surgery?) And so, barring any unforeseen events, we will head up to Atlanta on Wednesday, be there for prep on Thursday at 8 am, and then…Friday.

Obviously this is a lot to take in (which explains the delay on this post) but we are doing our best to stay positive, filling our time with friends and family as often as possible. Thank you so much for your continuing support, it does wonders for our state of mind.