So lets just say I'm a little frustrated with Children's Hospital right now. I got a call yesterday around 2pm stating that they need to reschedule Raygen's surgery because the plan they had worked out for her airway issues got lost between conference and scheduling and now there isn't enough time between yesterday and Tuesday to have Raygen ready. Their plan for her airway is this: they will admit her 3 days prior to her glen, they will vent her through her mouth or nose and take her trach out, they will then close her stoma (where the trach enters her airway) and let that heal for 3 days, during these 3 days she will be pretty sedated to keep her from moving too much while she is on the vent and they will probably give her some stronger pain meds because the vent is very uncomfortable for her. So then after 3 days on the vent they will take her back for her Glenn and 4 or 5 days after surgery they will then take her back off the vent and put her trach back in. I'm not sure if putting the trach back in is done in the operating room or at the bedside. I do not like this plan. I feel robbed of 3 days with my baby but at least they have a plan. I'm nervous that these doctors don't have their game together since this is the second time we have had to reschedule surgery. But I have to trust these doctors and trust their plan their the only ones we got. So again I sit waiting with no date and no idea of surgery but I have this feeling that they could spring it on my next week and it be a whole hurry and wait situation. I just don't want them calling Monday morning and saying we need to bring her up that day. I still need time to adjust and get my mind around whats going to happen. I hate seeing Raygen on the vent I have seen her go through some pretty awful stuff while on the vent and knowing she will be on it for 3 days prior to surgery makes me panic. I'm not sure how I feel about the whole situation. I'm not really sure about their airway plan because we do risk damaging the right side of her vocal cords again and that scares me since they have healed so nicely and we do hear some noise. I am numb to be honest. I had prepared for the 28th and that got canceled, then I prepared for Tuesday and now thats cancelled so I don't know what to do or feel right now. I am going to enjoy my daughters this weekend and not let this put a black cloud over us. We are still going to do Halloween pictures so hopefully I'll get those posted tomorrow. Thank you everyone for signing up to pray on Tuesday. I apologize for the dates always changing and I hope you stick in there and are able to pray on the new day because she needs all the prayers she can get. Raygen is going to go through so much and the only thing we can do is pray. My Raygen in a survivor, fighter, and the most courageous, beautiful baby I have ever known and I know with all the love and support in sent her way she will be fine more then fine.
I would also like to thank the students in Mrs. Witt's third grade class at Edison Elementary for the wonderful cards that they sent Raygen. Thank you so much. You are all so wonderful to think of her and pray for her. Thank you to Alannah Riggs who told her class about Raygen, you are so sweet and it was so very nice of you. God Bless all of you.