As I type this post Nick has headphones on and is listening to a story that is his sister Emily recorded for him. Every day now I will be putting head phones on him so he can listen to family stories or short stories narrated in the voices of everyone he knows.
I went to see a long term care facility where he will be going and it brought up a ton of emotions in me. It isn’t as bright and cherry as this hospital ,but it has a good nurse to patient ratio and he will have his own room. I am hoping my insurance will contract with them because if they don’t I have no idea where I am going to take him. Home health care is a possibility, but that was to be after this long term acute care phase. Our next goal is to get him off the vent so he can proceed to the Rehabilitation Institute of Chicago. It is one of the best in the nation and they do take people on ventilators like Nick, but those people aren’t in a semi vegetative state like Nick. Nick at this moment can’t respond to any type of commands. There is just tiny moments where he will do what I ask but its few and far between.
The spinal fluid test hasn’t come back yet with more information about if the West Nile Virus or the spirochetes from Lymes disease attacked his brain. Nick’s white matter has a ton of problems which isn’t encouraging at all however, I am about to research as much as possible on ways to rewire that area.
I met with the physical therapist and she taught me how to move all of Nick’s joints and legs so I can keep him mobile and not stiff. Your body naturally wants to contract when it lays in a bed so long. Every hour now I will be moving his arms and legs.
His EEG’s are showing less brain activity which makes me crazy and I am going to call around to find a neuro physical therapist. He needs so much therapy from swallowing to muscle therapy.
This is where I need my army. Many of you said you would like to help and this is the phase where I could use that. If you feel called to be on Team Nigro in any way for things like cognitive exercises or helping me with his physical therapy please email me at Gabby61@gmail.com. I need to get back to work because I am the only income our family has and I can’t be here at his bedside 12 hours a day. I don’t want to leave him alone very often for example when he coughs his body moves in such a large way he ends up in all kinds of uncomfortable positions and the nurses won’t find him to readjust him until much later. I am currently unable to live with that.
Thank you once again to the people who have given financially it has already helped us. Pray that I figure out how to balance all of this because right now I am swimming in a financial nightmare which I am well aware that we are just one family in Illinois doing the same trying to care for their disabled child.
Keep sending positivity.