The sound of a G-tube exiting a body comes with a small pop! Like the kind that happens when you put your finger in your mouth and curl it around your cheek and then out your lips…*pop* Did you hear it in your head?
Well, that was part of my week last week when I accidentally pulled out Nick’s feeding tube while transferring him from his wheelchair to the bed. It somehow wrapped itself around the handle of the chair and when I heard that strange little noise and I looked down and saw the tube not attached to Nick any longer I freaked out.
I lifted his shirt and saw a small pool of blood collecting around the hole in is stomach. Thankfully I just had a conversation with his Speech Therapist about what to do if this ever happened. I grabbed gauze and tape and taped Nick up and then I ran out of the house calling to my friend Lisa who was gardening in my yard. She was very calm and helpful (thank you Lisa) while my voice rose a few octaves. I called 911 and they actually calmed me down and told me that it wasn’t an emergency, but I did need to take Nick to the emergency room.
When Perry Nick and I arrived at the emergency room somehow it was the busy day of the year. We waited 5 hours and by that time the doctor couldn’t put the tube back in because our miraculous bodies heal themselves. So the next two days I had to find a surgeon/gastro doctor and without getting into how frustrating that was Nick had surgery last week and a brand new tube was placed in his belly.
Lately, my life has been about convincing people who work in cubicles that Nick is worthy of services. It used to drive me nuts when I had to do that when I served the homeless or even more crazy when I had to convince my superiors when I was a police officer that the help I gave was a right and not a privilege to the poor that we served. It has been a running theme in my life.
I am burning up some crazy Karma around this right now.
This also brings up this very careful dance around pushing for what is right and needed and not pushing the buttons of the people you are trying to convince. Sadly, I know what can happen to the person you are trying to help when the other person in power is feeling backed into a corner and they really didn’t want to serve you. When I was a teenager I went to visit my mother in the hospital where she was detoxing from prescription drugs. Even at a young age I could see the corruption all around me and how nobody was going to help my mom get well. Finally, she gets into a program and I go and visit her, but I see she is in great distress and no one was attending to her needs.
I pitched a fit….in the way one does when you don’t know how to hold onto your emotions and use it to influence for good. I got my mother what she needed, but when I left that day they put my mom in a straight jacket. It was horrible beyond belief. It scarred her mentally and she refused any visit from me after that because she didn’t want to be victimized like that ever again.
My soul was crushed. I just wanted my mother to feel better and I totally got why she didn’t want me there. It was way to scary.
As I maneuver through the medical system with Nick this story sits in the back of my mind. I have to literally bite my tongue or step away for a moment to gather my thoughts.
Like when I received the bill for $18,000 for Nicks medical bed. It was approved through my insurance and it has been a great help in Nick’s healthcare. The insurance company said I made a mistake and they refused payment. Now I am responsible for this large bill and the story is long and drawn out and right now there is no resolution, but I do have the Attorney Generals office working on the case and they are pretty confident in the outcome.
When you are taking care of someone with a brain injury the insurance companies will fight you for a very long time because from their cubicles they don’t understand what is taking so long for this person to get well. I have many stories like this but I won’t bore you.
I have been trying to get Nick into long term treatment again. He has come so far and is doing so well that I know if he can be in therapy all the time he would make big strides in his healing. It is a BIG uphill battle but I need to try. The place we are working to get Nick into is called QLI in Omaha Nebraska. www.qliomaha.com They were recommended to me by more than one resource so that is where I am focused.
I have been interviewing other families about their journey with a loved one with a brain injury and so far the stories have been all over the place. Some earth shattering sad and some pump up the volume fantastic. One theme though is that everyone lost everything. Their money, their homes, their lives as they knew it.
It is a scary place.
Things happen because you spend so much time in battle with the insurance companies all the rest of your responsibilities get lost. People in your circle can only hold you up for a little while and then they need to get back to their lives and like I said brain injury recovery is super slow.
The entrepreneur in me is refusing to go that route. I woke up the other day and said “Fuck that Noise” I will not succumb to someones reflection on how this should play out and since then I haven’t been able to take a full breath :-)
Panic attack? Maybe.
When I was interviewing an awesome mother of a 22 year old daughter with an anoxic brain injury, I heard about a personal training studio called Pushing Boundaries in Washington state. http://pushing-boundaries.org
I am seriously considering gleaning as much as I can from this studio and possibly sending Nick there for a bit so I can hopefully with a little luck open up a studio like that here in Chicago. I had worked in the gym industry for over 17 years and have developed programs before why not try now? Why should I let the insurance companies beat me into the ground. Why not be the proactive entrepreneur that lives inside of me and create a space, program, experience that I want for my son.
Now onto some milestones:
Stander arrived at our home and Nick has been standing in it and making great strides! His muscles in his legs are firing which means his brain is sending messages. His trunk is getting stronger which means he is getting stronger overall. If he ever learns to hold up his head on his own he could begin learning to walk again.
He passed is swallow study so we are eating food by mouth a little and it’s going real well. Next chewing and building endurance because it is hard to eat after not having solid foods for 7 months.
Nick will be receiving botox injections in his wrists and his feet which will help with spasticity and he will be able to unfold his hands and we can work on getting them working again.
He is going to have a 3 day EEG to make sure he doesn't’ have seizures so he can be taken off this medicine that clouds his nervous system a bit.
We are meeting with a company next Wednesday to get Nick a communication device he can use by scanning his eyes. I am very excited for the possibility to communicate with Nick on his own terms.
Lastly, our friends who own the Candlelite in Chicago are having a Night For Nick on August 8th from 5pm to 2am. All proceeds from buying yourself drinks or dinner or both go to Team Nigro and will be put aside to purchase a Ford Transit Connect Van that we already have in the works. So if you are around and you want to do a good thing and have some good food in a great atmosphere come on by!!!! Here is the website so you know where to go
Love to you all from our family to yours.