July 30, 2017 10:00 pm
It was a rough day for Josh -- and his parents. We went to church this morning and stayed all three hours. Bad idea. Josh was agitated because he felt insecure that we were gone for so long. He was relieved when we finally returned to the hospital.
Due to the hydrocephalus, we believe, Josh was very disconnected today and seemed to take another step backwards. The sunken skull he has had over the last week is now completely gone, which means that his brain is all swollen again. He is almost entirely incontinent. He is lethargic and wants to sleep all day. He can barely keep his head up off of his chest when he's sitting in his wheelchair. He quickly gets caught up in some meaningless repetitive move (slapping his leg with a strap, pushing his fork into his food, hitting the same button on the iPad). And we mostly have to feed him now. These are all setbacks compared to how he was just a few days ago. We have been assured by the medical personnel that this is all part of his recovery and nothing to be alarmed about, but we're alarmed. We have the all-important "family meeting" tomorrow at 11:00 and so we are hoping that this issue -- and a lot of other important issues -- get addressed then.
After dinner and a shower, Josh did rally a bit. He and Paul spent an hour or so playing with an old hockey game before it was time for bed.
The one big change today was Josh's right eye. It is now almost completely open. Unfortunately it is still sightless and doesn't line up with his left eye when he looks around. But we are hoping this might be a step in the right direction.
We hope to have more helpful (and possibly hopeful) information for everyone tomorrow. Thanks for your ongoing love and support. It is appreciated.
It was a rough day for Josh -- and his parents. We went to church this morning and stayed all three hours. Bad idea. Josh was agitated because he felt insecure that we were gone for so long. He was relieved when we finally returned to the hospital.
Due to the hydrocephalus, we believe, Josh was very disconnected today and seemed to take another step backwards. The sunken skull he has had over the last week is now completely gone, which means that his brain is all swollen again. He is almost entirely incontinent. He is lethargic and wants to sleep all day. He can barely keep his head up off of his chest when he's sitting in his wheelchair. He quickly gets caught up in some meaningless repetitive move (slapping his leg with a strap, pushing his fork into his food, hitting the same button on the iPad). And we mostly have to feed him now. These are all setbacks compared to how he was just a few days ago. We have been assured by the medical personnel that this is all part of his recovery and nothing to be alarmed about, but we're alarmed. We have the all-important "family meeting" tomorrow at 11:00 and so we are hoping that this issue -- and a lot of other important issues -- get addressed then.
After dinner and a shower, Josh did rally a bit. He and Paul spent an hour or so playing with an old hockey game before it was time for bed.
The one big change today was Josh's right eye. It is now almost completely open. Unfortunately it is still sightless and doesn't line up with his left eye when he looks around. But we are hoping this might be a step in the right direction.
We hope to have more helpful (and possibly hopeful) information for everyone tomorrow. Thanks for your ongoing love and support. It is appreciated.
Hang in there Baby. You know I can't do anything to solve this problem, but if having me there would, or could.
ReplyDeletehelp in any way, let me know.....I'll be there.