We went to Seattle yesterday and met with Dr Rubio (cardiologist) and Dr. Perkins (trach doc) and now Randy and I both know the surgery plan and I took very detailed notes. The plan is the same checking in on November 17th and taking Raygen's trach out and placing her on the ventilator on the 18th. Dr Perkins will then close her stoma either with a couple stitches or fully close it by having to cut some of the skin away and stitch from the inside out. The way he closes her stoma will be based off of what Dr. Cohen (surgeon) feels is best. She will then have her Glenn November 23rd (yes the day before Thanksgiving, this makes us a little nervous too.) With the idea that she will will be taken off the ventilator either that Friday or as late as Monday depending on how Raygen is doing in her recovery process. They plan to take her back to the operating room to take her off the ventilator because the plan is to see if she can breathe on her own before performing another tracheotomy. I just pray with every fibre in my body that she can easily breathe on her own and she will no longer have the trach. If Raygen does need to have the tracheotomy (which I am trying to prepare myself and think that she will just so I'm prepared) this will happen at this time. The healing process from the tracheotomy will be determined on how her stoma was closed. It could be as little as a day in the ICU or it may add another week. I am not concerned if we come home with the trach because I just want to bring her home and we are used to the trach. We know the trach is not a forever thing. Raygen may just have to wait till she is about a year and a little bigger. We will also have to adjust her pain meds and really make sure they do not wean her from any medicine too fast or without pain services permission. We have so much to think about and so much to worry about but I'm trying not too let it ruin the time we have now together as a family. I love the the quote: "God gives us a spirit of faith, not a spirit of fear." I'm trusting our God and giving my fears to him. Surgery is going to come so fast. Please pray for our heart friend Emma who is experiencing some difficulties after her Glenn. Please pray for her family as well.
Raygen has a cardiologist appointment on Thursday for a echo and ekg. Other then that no doctor appointments till surgery. Raygen also did not get her 6 month vaccines. Dr. Rubio said to wait so YEAH no shots for Raygen. Thank you everyone for all your love and support. Here is to a lazy weekend at home and I will try to post some pics.