Ugh. It's so frustrating to have a plan in place only to have to make changes to it! I called the cath lab at MUSC this morning to get some answers to some questions hubs and I have about the procedure. I'm glad I called, but I'm very irritated to find out that although the information we received Friday indicated Chase would only have a sedative for the procedure, the schedule apparently says he'll be under general anesthesia. This is NOT at all what I wanted to hear! We had a horrible experience when he was under general anesthesia for a bronchoscopy at MUSC when he was 16 days old that resulted in CPR and chest compressions! I had a certain level of peace knowing he would get a sedative instead of general anesthesia. Now that's changed.
Also, I guess you just have to know what questions to ask and how to ask them. I also found out that IF they need to balloon or stent his coarctation (which I'm about 99% certain they will), he will be required to stay overnight at MUSC Thursday night. This obviously changes our plans significantly! We had expected to return home Thursday evening and now it will be Friday so we'll need to modify LO's childcare plans, figure out if we'll need a hotel room or if we'll be able to stay with Chase in his hospital room, etc.
I'm glad I called.
I have to say the ONE thing hubs and I have been most disappointed with MUSC about is COMMUNICATION. It's the easiest thing to do and yet it never seems to happen when it's most needed!
Ugh! How frustrating!! U of M is the same way with communication. I think to them it's just the natural way of things and they don't realize that we DON'T know and need to be told (and want to be told) the details. Keeping the prayers and heart hugs going your way... :)
ReplyDeleteThat is so frustrating. I'm sorry you had to do all the legwork to find out this stuff. They should definitely be more upfront with the details! I'll be praying for Chase!
ReplyDeleteUnfortunetly you can not hang on to what they tell you. You might be told one thing from one person and then something totally different from another. I don't know why things are not consistent, but I SO understand your frustration!!
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