Well, here I am starting a blog that I swore I would NEVER do! When the boys were born and we knew they would be in the NICU for several weeks, a nurse suggested we start a caring bridge page to keep our friends and family up to date with news etc. I instantly thought of 'cancer' and refused to do one. I just longed for normalcy and didn't want anyone to think the boys had 'problems.' Looking back, it would have been a great thing to do and little did we know we would be faced with a journey for Preston that a blog or caring bridge site could have saved us so much time keeping everyone informed on his surgeries etc! After a year of avoiding it and now that we are traveling to seek opinions for Preston out of state, we decided it is a great time to share our story and keep everyone informed as we make big decisions for Preston's near future and decannulation (trache being removed). I plan to share Preston's story in more detail but for now, i will start with the latest update on P and our next bigger trip since returning from Iowa.
Looks like we are headed to Cincinnati after all for a 3rd and final opinion of P's airway! We leave in 4 short weeks and we are VERY anxious to hear what Dr Rutter thinks! We originally planned to go to Ohio in the first place when Tim and I felt it necessary to seek a 2nd opinion after learning the Cincinnati Children's Hospital is #1 for airway. But we were led to Dr Smith in Iowa City and we put our plans on hold with Cincinnati and traveled to Iowa last week instead. What a total blessing this trip was for Preston's future! We learned so many things that are necessary for P to be decannulated. We were very impressed with Dr Smith and he suggested we go to Cincinnati after all to see Dr Rutter (who P was going to see originally) for a 3rd and final opinion. Turns out the surgery Preston needs will be very invasive and Dr Smith would like us to have no regrets with our decision for his surgery. That tells you what kind of a dr he is by suggesting this. The amazing part is that Dr Smith is friends with Dr Rutter (i couldn't believe this......isn't God amazing??) and Dr Smith would like to discuss with Dr Rutter what he see's and thinks and they can come up with the BEST plan for Preston's surgery. We are in the best hands! This surgery will more than likely require Preston to go on bypass (a heart and lung machine doing this work for him since they will have to shut his airway down to perform the surgery and will also require cracking his chest open). I may need to get a double dose of anxiety meds! I will be spending many hours in prayer over this procedure! Tim and I try not to worry about this and have faith it will all turn out great but after everything we have been thru, it's hard to not think of 'worst case scenario.' Then it is ultimately up to us to decide which Dr will perform the 'Tracheal Resection' surgery he needs and where to travel to. So many pros and cons with each location. Hopefully we will know more after our trip in a few weeks. They plan to cut out the extremely damaged part of his trachea (lots of scarring from it being emergent) and piece the two ends of his trachea back together. It will be 2 weeks inpatient no matter where we go (we are really struggling with the idea of being away from Reid for that long) and they will decannulate him at the same time. Can this really be happening?? I have DREAMED of the day we no longer have to worry about Preston having his trache. Dr Smith said he can do the surgery this summer (yes you read that correctly) and now we will find out if Dr Rutter shares the same opinion and care plan for Preston in just a few short weeks! Lots of prayers for guidance of the doctors and us, safe travels, HEATLH for Preston, and good news from Dr Rutter would mean the world to us! Preston's story will be coming shortly! Stay tuned! :) Have I mentioned that Tim and I would be LOST without our family, friends, and nurses who are by our side every step of that way?? We are SO blessed and we know it and do not take it for granted!!!