Wes has been a busy little guy. He absolutely loves school. He woke Sunday morning asking, if I would get him dressed for school. He led the costume parade as Superman. Yes, this is very fitting for such a strong little guy. He is definitely my little super hero.
Past few weeks have been pretty busy. Wes had his ear tubes replaced. He saw the little tiger hospital gown and had a melt down. We were very thankful for the hospital music therapy. He loved playing the instruments and singing.
During his surgery, he had some breathing difficulty. Dr. Becker came out and sat down. I knew this was not good. She and the anesthesiologist are very concerned with his airway. His airway started to collapse and he nearly needed to be intubated, but the surgery is short and the anesthesiologist worked with him. She of course feels that there needs to be a plan for Wes that results in him having a safe airway. Until that can be accomplished she still recommends a trach. His breathing did improve after his tonsillectomy, but has again become concerning. Nothing like before, but then not like it should be.
Two trips to Gainseville in to weeks. First to see the pulmonologist, then the craniofacial team and have a sleep study. Soon heading back for a full cardiology work up to see if his obstructive apnea has done any damage to his heart. That is the biggest concern, permanent heart and lung damage. Damage beyond what I can even wrap my mind around. Dr Curry just says Wes has come so far to let this…
Thursday morning we saw the craniofacial team at Shands. Before I even started sharing Wes’ recent tube surgery, Dr. Seagle expressed how complex Wes’ case is and the fact that he needs some major surgery. The information about his tube surgery was just confirmation to this fact. I asked specifically about his experience with these specific type surgeries, which this team does not see very often, one case a year. This is probably why no one has offered a plan for Wes until now. Six months ago, I put the pressure on for a plan. I got nothing! The surgery is huge, more involved than his original neurosurgery.
Why does it take so long to be heard? I was not speaking alone; I had Wes’ pediatrician and local ENT behind me the entire time. Wes was 7 months old, when his breathing became an issue. Nearly 3 years later and 3 plastic surgeons, to finally get a validated plan.