Be Brave

Yesterday was all about being brave, for Nick,myself and Perry.  Nick was taken off sedation completely yesterday and was tested with a breathing test.  He passed part way meaning he was breathing on his own through the vent (it was turned off) but he wasn’t totally awake.  He would respond to commands but you can tell that he has “checked out.”  This can be for many reasons like the drugs are still rolling in his system like when you are someone who has a sensitive system and you took a benydryl instead of a sudafed so it knocks you on your ass and you basically have to sleep it off.  However, the doctor and myself think its Nick’s survival skill to not freaking out on the ventilator.  This as a parent is super hard to emotional grab hold off ,but I know for myself I would do the same thing.  We want to make Nick as comfortable as possible while he is healing so he received a Tracheostomy yesterday which means he is still on a ventilator but through his throat not in his mouth.

Fun facts, did you know that your trachea doesn’t have any nerve endings in it so you can’t feel pain.  The incision is about 1 inch long and he has stitches so that is where it would be a bit sensitive.  He is also getting a G-tube which will be placed directly in his stomach so he won’t have any tubes from the neck up. After his surgery seeing Nick’s face for the first time was wonderful.  He looked so peaceful and less uncomfortable.  The tracheostomy is a bit harsh to look at and I felt woozy looking at it I am not going to lie, but I am just going to have to “woman up” and get a grip.  Another fun fact is about your brain.  The last cat scan showed some fluid on his brain but the neurologist said it is now fluid that any other 23 year old would have.  So I asked, “does that mean when you start getting older you become dry in your brain?”  She said, YES. Your brain becomes like a raisin………………

Ugh.

Nicks x-rays have come back clean.  He now has normal lungs which is excellent but the infection is still landing in different places in his body.  Curses to the West Nile Virus!  Nick has been spiking fevers at night which suck because we can’t get rid of his bed of ice which makes me nuts quite frankly and sad because he shivers so much that his body starts reacting in negative ways. His heart rate rises and his blood pressure rises. It is all natural stuff but that is when I want to scoop him up and hold him close to me and sing lullabies to him.

Yesterday, we started talking about long term acute care.  Which means he needs to stay at a rehab center until he learns how to do basic things again.  He will learn how to talk, walk, and clean his own ventilator.  One day he won’t have that thing but it takes a while before they reverse it.  Although, the surgeon did say that he has seen people who have checked out one day just respond and wake up but that is rare and mostly in the movies.

It will be a very long road indeed, but one we will not be taking alone because the Nigro’s feel all of you out there.  Eventually, I will be able to ask for things from you because many of you have offered help and assistance and I know in the future there will be things we may need.  Right now Perry and I need to start checking out long term care facilities.  One is at Holy Family hospital and the other is called Kindred Chicago Lakeshore.  I will be seeing if my insurance will allow others like a big gun like the Rehabilitation Centre of Chicago.  I have seen so many people go through there successfully it makes me want to get Nick in there.

Lastly, thank you so much for all of your prayers and positive thoughts, mantras and candles being lit everywhere.  It is working and I really couldn’t have done this journey without all of you.  November is the month focused on gratitude and I have immense gratitude for each of you.  I hear that the fundraising page that Jackie and Zen put up is gathering steam and for this I truly thank you.  Our medical bills are gigantic but necessary to keep someone I love and you love here with us.  As one of my friend says to me when things get very HUGE….”It is what it is Lisa, deal with it.” It looks harsher on the page then when she says it to me but basically it means, at least to me, this is your journey and you have the abilities to deal with it as only I know how so with love and support and a bucket full of faith we will pull through even if this is for the rest of my days.  They are mine.  They are Nicks and they are our families and we will survive.


Love to you all.