ALMOST DAY 54, SUNDAY EVENING

O.K., so it is just me again. Sometimes I get on a roll and there's no stopping me. But back to the day that we were feeling pretty confident again, only to be brought back to reality pretty quickly. Robb was giving Joe's sideburns a trim. It is a good sign that Joe is beginning to think about his own body and starting to try to take care of it himself. He is able to help out somewhat with the daily sponge bath and can shave himself with an electric razor. He's been doing this without a mirror and just recently he saw his reflection for the first time. He didn't recognize himself, but we think he is looking wonderful. But, when Robb was doing Joe's sideburns, apparently he inhaled some hair into his trach, and began coughing and choking and unable to catch his breath. His nurse began heading for the wire clippers that have been hanging above his bed in an event such as this. She had them ready to cut the wires holding his jaws shut if he began to vomit or was unable to catch his breath. We managed to get to some deep breathing and then back to some normal breathing and things got back to normal. It was only after a few minutes that Joe admitted that he had actually spit up a little bit, but managed to swallow it back down the right tube so that it did not enter the lungs. It terrified the family and rattled his nurse, but it did serve as a reminder that we are not home free yet. It left us feeling grateful that we had a boring weekend ahead of us. We have learned that little or nothing happens in the hospital over the weekend.
So, in the meantime, I had called Dr. DeFatta, his Reconstructive Facial Plastic & ENT doctor, to see whether his next surgery might be planned in conjunction with the Plastic Surgery planned for next Friday, in the hopes of possibly saving one surgery. He was not in the office on Thursday afternoon, and then in surgery on Friday, but it did not worry me, as I thought I would have time to call again on Monday. Well, lo and behold, Saturday morning Dr. DeFatta showed up in the hospital room, pulled out the wire clippers and started cutting. We were so excited, Dana was snapping pictures for the family photo album. Joe was so surprised, he did not know what to make of it. And then, TA DA, the jaws were free!! Very stiff and painful, but free. Dr. DeFatta explained that the plan was to unlock the jaws and see what happened. He admitted later that he feared that the jaw would slack back into the former position, but it did not. He was surprised and thrilled. He said that he couldn't have hoped for a better result and certainly didn't expect it. He already had Plan B and Plan C in mind. But so far, so good. Now comes the work of rehabbing the jaw. It is very tight, but open a little bit - enough to put soft food into the cavity. Joe couldn't wait. He's also excited about yawning with his mouth open (you try yawning with your mouth clamped shut - it's miserable) and being able to sneeze. Very small pleasures. Dr. DeFatta made his own little manual CPM machine for the mouth by stacking tongue depressors at an angle and taping them together. His first job is to slowly force the mouth open one tongue depressor at a time. When he reaches the top of the stack, he will be at about 2.5 cm. He will need to work up to 4 cm. So he has plenty of work to do, but he is excited about it and feels like he is making progress. It was a Red Letter Day. The plan right now is that on the 19th, the arch supports on the roof and floor of the mouth and the screws holding them in place will be removed and bands put in place to hopefully hold the jaws in place. Very encouraging.
I'm headed back to the hospital. Todd is with Joe now - I think they were into the Patriots/Dallas game when I left. Dana left early this afternoon and by now Robb is probably back in Greenwich. Todd will be leaving tomorrow a.m. for a business meeting in Scranton and Stacy and Scott will arrive on Tuesday, I believe.
It will be a busy week with the Wound Vac girls in on Monday & Wednesday, and physical and occupational therapy in every day and lots of exercising in bed and with the "2" CPM machines. We will do as much as we can these next 4 days, as the plastic surgery will temporarily put a halt to the leg exercises for a while. So we are excited and anxious going into this week.
Thank you again for all of the prayers and good wishes. They are definitely helping all of us.
Love, Cindi