Today was long, frustrating, difficult... but essentially good.
Happily Parker's temperature has been normal for a couple of days so there were no counter-indications for the surgery.
They left us alone in the room for most of the morning just holding him.
The speech therapist and ENT psychologist both came in and discussed cochlear implants with us. The bilingual issue is going to pose a challenge in the system at the beginning but we are looking at ways to work through this. The speech therapist is very optimistic about the prospects of him being able to speak and hear, if not normally at least at a level that most people won't notice it. This will depend in large measure on what damage has been done to the communication centers in the brain which we won't know for a very long time.
After one week in the USC we are now off to new places. We felt a lot less attachment to the waiting place and the staff there as our interactions were much more limited. We packed up all of our posters on the wall in a black backpack and a polka-dot tote, took Parker's car seat filled with our coats and helmets and walked Parker over to the operating bloc. He was nestled in a baby stroller with his pacifier and they let Mehdi-bunny accompany him as well. They even unhooked his vital signs monitoring equipment so he was completely unattached for about 40 minutes.
He was scheduled for his shunt surgery at 12 but they didn't take him in until 1:35PM. They indicated that the surgery would take 25 minutes. After a very long 2 hours and 15 minutes they allowed us in the recovery room. It was disorienting at first as there are twelve beds or cribs around the room with various aged children in them on top of that we weren't really sure what he would look like or what state he would be in. We saw him across the room with a full head bandage -- like an american football helmet with a chin strap but no face guard. He was very agitated and alert, grabbing at his tubes and lines and sobbing his hushed cry. He calmed down a bit once Renee put her hands on him and we gave him his pacifier. We then started to try and figure out which variation of the surgery had happened. In addition to the head bandage he has a bandage on his stomach so we supposed that the internal shunt was implanted. Later we noted a tube under his skin running down his chest. While disconcerting to see him in pain, Renee and I both noted that he seemed to have more movement, and range of movement than before. He also has an iv in his right hand and right foot-- Renee says this is a good thing as they were considering putting a central line back in. Refreshingly, he still has no tubes going to his face.
The recovery room is not a happy place. Various children with various ailments all waking up, some to find one or both parents there, some finding themselves alone. There is a sign on the door asking parents to respect the privacy of the other patients, but there are no curtains or doors, everyone is hooked up to a machine filled with children crying. For that moment I was glad that PJ could not hear. The two hours in the hall waiting for the surgery seemed short in comparison- it is a place where I will need to better prepare before our return.
When we left the recovery room we thought we were going to the neuro-surgery ward upon arriving there they re-directed us to surgical ICU (previously we were in the medical ICU). It is difficult to put the blue blouse on again, it is also difficult that we can no longer hold him.
Oddly, even though we are in the ICU they are only monitoring his oxygen level and blood pressure -- up to this point they have monitored his heart rate and respirations as well.
We finally met with the neuro-surgeons just before 8 PM (they had been very busy) and they let us know that all went very well and the build-up in the brain was just liquid. They will check the shunt placement tomorrow with the CT scan and they left 5 cm behind the ear for the cochlear implant surgeon. She also told us that we were in the ICU mostly because there is a shortage of beds in neuro-surgery and they share the same floor.
After not eating for 10 hours, having limited pain meds and the effects of the surgery and anesthesia wearing off--he was a very upset little boy tonight to the point that he ended up vomiting mucous a few times. It is difficult for all of us. At one point we reminded ourselves that we could see the pain because he was awake and could cry, and cough, and vomit-- and this was a good thing- a hard thing- but a good thing.
Parker is pushing us along. I am not sure if we consider we are enduring this "well" yet but we are at least keeping up the fight and learning that endurance takes mental, spiritual and physical effort.
