Parker had a good day. He seems to be a little bit more alert each day and today everyone seemed a bit less stressed and a little more happy.
We were glad to be back to weekdays and have the weekend over. This morning the staff was in full force and there seemed to be a good rhythm about the place.
Renee felt comfortable enough to leave for a couple of hours this morning to help the kids go back to school (they have been off for two weeks). While she was gone the nurses noted that he was looking more intently with his eyes open as if he could see you. Up to now he had blinked his eyes open and shut but sometimes they would roll back in his head and honestly he looked a little bit disconcerting (so much so Renee was trying to close his eyes). When Dr. Oualha examined him he was very alert and he would track the movement of his little bunny with his eyes -- the doctor was visibly pleased.
They also took off the EEG monitoring equipment and washed his hair a bit. With it on Hannah thought that he looked like he had a ballerina bun in his hair. Now he looks like a little boy.
After Renee returned the neurologist was examining Parker and was very inquisitive about the fact that he tracked the bunny (at that stage PJ was sleeping). Then he opened his eyes again and tracked Renee as she moved her head to the left and right up above and down below. The neurologist was very encouraged.
Now the staff is starting to see him a little more clearly-- they even correctly noted that he looks like his mom (although his hair seems to be coming to the dark side).
The nurses also say that he physically responds better to them when they speak English but they told us they will only speak French to him when we are in the room as their English wasn't up to par.
Although we anticipated him having his surgery today, it now has been pushed back to tomorrow afternoon. They assured us that it wasn't because of Parker's condition that it wasn't going to go forward-- but that they just couldn't fit him in today. While we are anxious to get this procedure done (especially to have him taken off the respirator) we are trying to not be impatient and are kept zen by the reassurance that scheduling delays mean that it is not an emergency.
The afternoon/evening is always a bit more difficult for us he seems to get agitated and flails about while coughing. It is difficult to watch as you don't hear anything you just see him with wide eyes and red face heaving his little torso to get stuff out of his lungs.
His fever comes back in the afternoon and they are trying to find what the cause of this is.
The neuro surgeon spoke to us and she was slightly concerned about the fever and thought we could delay again-- Dr Oualha and I both expressed that we were keen on pursuing the surgery as that would allow him to be extubated shortly thereafter, which allows us to see how he progresses without sedation and all of his tubes.
Dr Oualha also gave us some timing and scenarios-- in the best case we are still here for another week or so although we may get to move from ICU to a different service in next couple of days if things go well.
Renee and I discussed how we have both grown over the past days. I always convinced myself that I had a lot of faith but we both realize that our faith has taken an expansive leap. 10 days ago if I was told that my son had a 50% chance of having a disability I think I would have gone through several stages. The statistician in me would have rationalized that there was just as good a chance that there wouldn't be a problem. At some point, doubtless, there would be a feeling of being the victim-- why would this happen to my child. Then eventually I would have got around to some semblance of faith-- but more of the pleading call of distress having already worked through those options. Even after the results of that process were known-- if it was a positive outcome my reflex might be to assume that we turned up on the right side of the coin. A negative outcome would have brought a level of doubt and possibly a reinforced feeling of being victimized. My faith would not have grown and quite possibly would have weakened.
Now we are looking at that exact same situation and I feel an abundant amount of faith. Faith that if there is no disability that it is only through the power and mercy of God at the humble request of his parents, family, friends and many other people who have prayed so diligently. But also faith that if there is a disability that it was the will of that same powerful and merciful God who heard those same prayers and decided to answer them differently in order to allow us to learn something else-- something greater. And while we continue to earnestly pray for his full recovery-- I can say, in honest faith, "Thy will be done".
The concern we have is that such a galactic increase of faith in a short amount of time is bought at a difficult price. It is still painful for me to fully return to last Wednesday evening when they were asking us to start to consider several very dark choices. Even past those somber questions they were telling us the probability that Parker would have any kind of normal life--a life with the ability to have meaningful personal relationships or human experience-- was small; the chance of him returning to the state he was before was extremely small. While Renee exercised faith that, beyond the dire predictions, all was possible, it was only through participating and witnessing in the power of God putting Parker back in an positive progression that my faith was solidified and expanded.
We are now looking for how we can grow faith more proactively and progressively without having to pass through such seismic events.
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