The three of us did our 2 month stay in Cincy. Even though there was a long hospital stay we enjoyed it, outside of the hospital we got to do alot of walking throughout the city, saw a lot of sights, and made lifelong friends. Vivian's surgery was done May 24th, 2005.Laryngotrachealplasty with 2 grafts, one in the front and one in the back of her airway. It was done as a 2 stage procedure, meaning the trach stayed in afterward. There was a problem with her healing after surgery; it's unsure if she lost part of one graft from a coughing fit or if it just didn't work, but the end result was a flight home while still trached which totally wasn't expected. We went home with the assertation from Dr Cotton that we would look into possibly another surgery in the summer of 2006.
We were sad, but made the decision that we would look towards life with a trach and if it ever was removed we could be overjoyed. We continued with speech therapy even without any vocal sounds. We got a Vantage plus, a box that held many pictures that Vivian could push which would be her voice to anyone that didn't know sign language. She continued learning sign language and by 2 years old knew more than 200 signs.
Then, around January first Vivian had a cold and it was another sleepless night for her and mom, which was always the case when there were any upper respitiry issues to contend with. Only difference is that this time, while she was having a huge coughing fit, I tried to just slip her trach out for a few minutes, with the thought that everytime she coughed her trach tube moved inside her airway and made the coughing worse, "tickling" her trachea as she coughed. So I slipped it out. Vivian lay her head against my chest and breathed without a trach for about 3 minutes for the first time since she was 2 months old. A moment I will never forget. Then reality set in and I knew the trach had to be put back in until we contacted her local ENT, Dr Lundeberg and discussed options.
Dr Lundeberg was willing to take the trach out, while she was hospitalized, so that we could monitor her closely. He said he was cautiously optimistic that it could work. We scheduled it and took her in to Emanuel hospital on January 25th. We took out the trach and she smiled at Dr Lunderberg. Sadly, Eric's dad, Vern, whom had been diagnosed with Lung cancer the preceding November collapsed at home and Eric got the call while on his way to the hospital where Vivian, Levi and I were. We put the trach back in, with the plan to reschedule later when it was a better time in our family. Eric drove to Bellingham to be at his Dad's side. Grandpa Vern passed away that day, about an hour before Eric arrived at the hospital that he had been sent to. We schedlued decannulation again. Valentine's Day sounded like a wonderful day. We packed Vivian's Valentine pajamas and dressed Levi and Vivi in there "Love stinks" skunk shirts and headed to Emanuel hospital. Dr Lundeberg called to let the nurses know he would be there shortly and that I was allowed to take her trach out when I was ready. So I slipped it out. She smiled and continued to chase her brother around the hospital room and in and out of the crib. She looked at mom and she said "Hug" She SAID hug!! A word! It actually took me a few minutes to realize she was talking!!