Parker took his next steps today and we are looking forward now.
He was very congested during the days leading up to the surgery and we had the respiratory therapist work with him each day including Thursday morning before we checked into the hospital.
He was very active on Thursday, holding his head, arching his back and even doing some ab-crunches. The movements are still brusque and unsteady but slowly he seems to be gaining more control.
At Trousseau (the hospital), PJ smiled almost constantly and would laugh when tickled. There was a hospital strike so there were few people, either patients or staff so it was almost like a retreat.
He has a pull-out bed in his room and one parent is allowed to stay at the hospital overnight and I took first shift.
At 1AM the nurse came in to wake us to give him his medicine and his last bottle. At 6:30 she woke us again so that we could bathe Parker and get him ready for the operation.
Around 7:30 they gave him a suppository sedative and Renee held him until he fell asleep. At 8 they took him to the operating bloc.
We were still unclear how long we would be waiting; if they did one side it would be 3-4 hours, both sides would be roughly double. With prep time and the rest they told us minimum 5 hours before we would see him again.
We were sufficiently tired that we both slept for a couple of hours in the morning in PJ's room. They finally called us just after 1PM and told us that one of us could go to the recovery room.
Parker was the only patient in the recovery room when I arrived. He was very much still asleep and the two nurses were trying to draw blood from him for tests and were struggling to do so. He had the familiar head-bandage on but I noted that it was a bit larger on the right side, as if they had wrapped a golf ball to his head. His face looked puffy and his hands and feet showed evidence of a struggle to get an iv in.
The anesthesiologist came a few minutes later and indicated that everything went well on her end but given the level of congestion that remained she almost recommended postponing the surgery. She also reiterated that he was very hard to get a line into.
Because of the congestion his blood-oxygenation levels were desaturating rapidly when they would take off the oxygen and that this might require him to stay up to 24 hours in the recovery room. As other children started arriving I started praying that he would be able to leave. At one point when the nurses were trying to draw blood from PJ again, a boy who was about ten in the bed behind us, vomited into the air, some of it landing on the nurse.
Dr. Couloigner came into the recovery room for a brief visit and was very positive about the outcome. The ossification was not severe and they were able to work around it and he indicated that they did a test of the equipment and all seemed to respond as anticipated. They will leave it turned off until the scarring heals and we have an appointment to activate it on May 27.
After about 2 hours in the recovery room his oxygenation level had stabilized and I went to give Renee the update. When I returned there were five people in blue standing around Parker's bed but they quickly reassured me saying they were trying one last time to get a blood draw. After about 15 more minutes of me waiting in the hall, they told me they had succeded and that he was very brave during the process. Soon after, they released him to his room. Renee counted the places he looked like he got poked and stopped at 30.
The doctors are currently saying he will get his head bandage off tomorrow and he should be released on Sunday.
He is a tired little guy right now and we are letting him rest as much as possible. Post-op he has moved all his arms and legs, arched his back in defiance several times, finished off a two small bottles of milk and flashed us a couple of coy smiles-- I don't think we can ask much more from him today.
Renee's mom is here again and Abby came home from her school trip. Our dear friends and family have once again rallied around us and have allowed us to feel lifted up and sustained-physically & emotionally.
After Renee left to pick Abby up from her trip, an older man dressed in medical garb came by with a rather large box filled with all of the external equipment that goes with the internal hardware that PJ had surgically attached this morning. He walked me through all of the different contents of the box, the magnets, microprocessor, batteries, infant adaptation package, sport module, external microphone for his teachers, external listening device for his parents. He told me that it was important to send in the warranty card as soon as they turned it on, where I could go to get insurance, how we needed to de-humidify the material every other day, how to charge the batteries, etc. He then stacked everything back in the box as neatly as it was before and left me there pondering for a few seconds before he came back in and presented me with a large-ish Koala stuffed animal complete with its own imitation cochlear implant that velcros behind its' left ear; compliments of the Cochlear corporation in Australia.
On the box and the yellow and white shirt worn by Parker's new friend from down under is the company's tag-line "Hear now. And always".
This is one of those days that we hoped wouldn't come. Not just to spare PJ the pain of an operation but also because from this point there is no turning back for at least one of his ears.
As with so many things, it is better now that we have taken the step than it was when we were consumed with the questions of whether or not to do it. Although daunting as the whole day has been, and the reality of adding new tasks to future days to work with all the new equipment will require adaptation, it is somehow refreshing to see that the dreaded monster in the closet, is now out, is less dreadful than we thought and we can actually deal with it.
PJ is sleeping now, he looks like a little warrior wearing only his diaper but with little bruises and pin holes all over his skin, bandages on his head, hands and feet. He is surrounded by his guardian animals that have made so much of the journey with him. Some; Mehdi-bunny, little-frog pacifier holder, gigi the giraffe, he holds tightly in his arms, near his face. The newest furry mate sits at the bottom of the bed where PJ gives him a few furtive glances when he wakes up. I don't think Parker has become sufficiently accustomed to him yet to embrace him (or even name him)-- but the Koala is starting to grow on us.
