Good Morning,I believe this is my first time posting to this forum, so please forgive me if I don't have everything dialed in terms of typical methodology for posting a topic. My son (3) was recently diagnosed with ARCAPA, the less-apparent cousin of ALCAPA, and we are looking to schedule surgery to get this remediated. We had a meeting with a surgeon at Denver Children's, which is close to where we live, and we felt that there were some things that were off-putting. The surgeon did not seem to know our names, nor our son's name, and was very blunt and somewhat aloof in how he answered questions. At times, this took on a dis-interested style. I come from a family with a lot of surgeons in it and immediately was reminded of my own father who I would imagine has a similar bedside manner, but my wife came away feeling very uncomfortable.Contrast this to how folks from a hospital in Austin, TX treated us. When we met with the surgeon at that hospital, they had CT scans ready to go to provide a visual aid on how the procedure would go, plus we were introduced to the entire supporting staff, from counsellors to nurses, and received a greater overall picture of the care that would be provided there. Granted, this felt a lot more like a sales pitch than our meeting with the surgeon in Denver, but the differences were stark enough to cause some doubt to creep in our minds as to the "right" decision.I'm asking for those that have gone through this, as parents or providers, is this something that should be concerning to us? We know the surgeon in either location would likely do a good job (at least that's what we tell ourselves), but have people had this type of situation occur wherein meeting with the surgeon created these doubts and would be willing to offer their insight on their experiences to help us understand and make a decision.
I also would like to hear what the recovery from open-chest surgery is truly like with a toddler. We've received the cliff notes version, indicating that a stay in the ICU will likely last for a few days to a week followed by some return visits before finally releasing us entirely to go about recovery at home. What are days in the ICU like following a procedure like this? What are the major pitfalls of the recovery for a toddler? What can parents do to better prepare for this recovery? Things of this nature.
I greatly appreciate anyone who wants to take the time to respond to these specific questions.