A few days ago I wrote about my son who was having his shunt replaced; brain surgery.
Tonight I dropped him off at his home, with his friends, his housemates.
A few days ago I was in dark place, exhausted and worried.
For weeks he had fought through what are relatively common ailments, made more complex by his underlying conditions only to have, after few day of good health, new symptoms or a return of previous ones. We joked it was like a ongoing house episode, without the Sarcoidosis diagnosis.
Although he cannot talk, he can communicate and his strength and good humor and patience helped us through the multiple hospitalizations.
Those of you who commented about your own experience with shunts know what can happen when a shunt fails. I'm no doctor, but his case it was lethargy, a change in mental state, in eye function, in ability to communicate.
At first we thought the tiredness was explained by his other recent issues, and in fact we returned to the hospital to reexamine his previous diagnosis. It was there we noticed he was not focusing and tracking properly, and realized the issue might be neurological. By the time it was confirmed and the transfer to MGH initiated his ability to communicate was failing.
8 hours after arrival, in the wee hours of the morning the surgery was done.
By the time I wrote the diary we knew the clinical signs of pressure were gone. But it was not clear the strength, good humor, patience and communication would return. And with all of my son deficits it was a dark time waiting for his strengths.
Fearing they might not return.
But they did, at first simple communications, then more complex and by the time we waited for discharge today the good humor and smiles.
And tonight he used his communication device to say what he always says when he rolls through the door of his home:
Hi Everybody.
And I must say:
Thanks Everybody. Reading Your well wishes really helped.
Of course there are still risks, still healing to be done, but we are back to our normal.
Almost.
Something else changed.
I found my voice when I wrote that diary. Thanks