Today was a recuperating day for us.
Parker had no appetite this morning but they were not concerned and thankfully did not put a feeding tube back in. They allow us to hold him but today he seemed to prefer not being moved around as much this morning.
Early in the afternoon they took him to get a CT scan and a head x-ray to check the placement of the shunt. For the previous two scans he had been heavily sedated. Now that he is awake they cocooned him again. He was relatively calm-- he is now used to machines around him.
Yesterday the speech therapist had recommended that we continue to talk to him while looking him in the eye as it would help him progress his language ability. I spent about 10 minutes telling Parker of details of my morning with his sisters and he kept his eyes firmly focused on mine the whole time.
He seems very tired but not sleepy today-- doctors say this is natural for post-operation. The ICU put a pad under his right hand where the iv is as a way to keep the iv in place. This limits the use of his digits on that hand and it reminds us of a bear trying to paw at different toys or his pacifier.
We tested some basic communication with him. He would hold up the pacifier with his left hand I would open my mouth and made a sucking motion. After processing for a moment he pushed it towards my mouth. We successfully repeated this a couple of times. Not sure if this means anything at all neurologically but it felt like communication to us.
The surgical ICU was a bit of no-man's land. Our interactions with the staff there were brief and formal but the overall environment was fairly hostile. I assume that it is the same in all situations where there are multiple specialties looking after a patient but there is no one person, doctor or nurse, which follows him through each service. In addition each service seems to have their own protocol-- including visiting hours. As such we have to build up a rapport with the staff in each new location. It is a tiring process when we are already tired. The USC was easier as we knew Dr. Heilbrunner-she was the first doctor we met here- for surgical ICU we were foreigners-- and just passing through.
In surgical ICU visiting hours are after 1PM up until 8PM--this didn't work for us and we expressed this repeatedly in the most polite, composed way we could. The nurses listened but noted they were not empowered to make exceptions. When we finally spoke to the docter on call, he arranged our transfer to neuro-surgery, some 20 physical steps away from the ICU but seems very different in terms of environment.
The room in neuro-surgery feels like a traditional hospital room. There is a television, closets, a closed bathroom, a chair that reclines and doors that close. There are no blue blouses, no knocking on locked doors to ask to be allowed to see your child. It is still the hospital but our stress level has dropped significantly since arriving here-- we still need to negotiate visiting hours. It is unclear how long we will be staying here or where we will be going.
Tomorrow marks the start of Parker's fourth week in the hospital. This is the 21st 'update' that we have sent out. It has become ritualistic. I write the updates while we sit in the room with Parker-- it is hard for me to write them at home or outside or in the waiting room. I then pass the Blackberry to Renee who corrects and suggests things to add or take out. Sometimes she reads then softly says "perfect". Sometimes, tonight, she cries and wishes that we didn't have to send an update. I push the send button just as we leave his room for the night.
The send list has expanded a little each day. I have no desire to know how many people are on the list or how many of those send it on to other people as it is terrifying to think of sharing such intimate, soul-bearing thoughts and experiences with friends-- strangers I can accept easier. Gradually more terrifying things made the update process easier, then necessary, then cathartic. There is much that goes un-shared-- too close, too difficult to express, too sacred. Still, the update has been necessary for us to communicate some level of information to our loved ones and vital for Renee and I to celebrate our wins and grieve our losses.
I have wanted to stop writing the update so many times-- wanted whole-heartedly to write that he is completely healed, thank you now feel free to resume your normal lives and we will ours. Wanted to stop writing because some days we felt inspired, uplifted, strong; some days we didn't. Three weeks was the maximum we thought we would be at Necker. Yet we remain for a fourth with no definite date in the future to leave and assured that even that anxiously hoped-for event does not provide the happily-ever-after. The updates will continue, I am not sure how long or how frequent they will be-- probably daily for a while but at some point typing for two hours with my thumbs will become impractical and we will be doing other things than sitting in a hospital room most of the day.
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