The Novalung Interventional Lung Assist (iLA) device is a ventilator that allows for oxygen and carbon dioxide gas exchange to occur by simple diffusion. It has been used in patients with severe acute lung failure due to severe pneumonia. It potentially helps reduce Ashton’s chance of going on the oscillator. Essentially, his vent has been sunk down in to his diaphragm and allows him to decide how much air he needs. It will hopefully aid in weaning him off eventually as it has been two weeks.
In other news, people are beginning to surmise that this is more GVHmotherfuckingD. Of the lungs now.
Sorry. I know I curse a lot here. I don’t generally walk around spewing obscenities. Well, not in mixed company, anyway.
I AM SO SICK AND TIRED OF HIM BEING SICK. I am sick of his own body attacking him every time a new day dawns. He never gets a break or a chance to smile. And “they” say I handle it well. They say other parents (parents?) hide and give up and don’t communicate or come to rounds and disappear. How much easier would this be if we DID have another parent here? I am the lead decision-maker and it has made me grow. But sometimes I do want to hand over the reigns because I don’t KNOW. I wonder what Scott would say? What would he do? Would he have run away? If it was overwhelming to be a parent of a well child, this is times a million. I choose to believe he would have moved his life to Cincy.
I do not CARE. I do not care how I am handling it. I do not care if I am praised for handling it. I do not care how anyone is handling it. I care how he is handling it EMOTIONALLY. How does a kid, a lively beautiful boy recover from this? Even if he is magically cured of all Gvhd tonight, he still can’t walk. He is almost six and cannot read. He may have hearing loss, vision loss. Most definitely behavioral problems will ensue. How do you learn to properly interact with the world when your world is 6 foot long by 3 feet wide and you can only point for what you want or need and you cannot have what you want which is so very basic: friends, water. Breath. Your underwear. Your dignity.
Subcutaneous emphysema. That;s the latest fear ten minutes ago. It’s twice a day, something something something something………STOP.
Air is leaking in to my son’s FACE.
The Chaplain came even though I said not to. It’s a bad omen when a person of the cloth is nearby. I told him I was agnostic and why.
So, that was depressing.
On a much nicer note, my dear friend, a professional in Chicago held a fundraiser in his office and I received two checks totaling $501 today. Thank you, J.T. <He’s kind of an anonymous type. J
Also, Ashton was elected for ALEX’S LEMONADE STAND www.alexslemonade.org
As an upcoming HERO to be featured on the site. Check it out. They do incredible things for children with disease.
I will post it when it goes up.
And, this is really cool, my friend, Helen, from Chicago is flying here for the AFTERNOON tomorrow.
I have not seen a very familiar girl friend face in sooooo long and it will be a balm on this tired, old heart. I am crying in anticipation, the effort behind it.
Not to mention my care package from Amanda today and some yummy, spiritual stuff to lean on. Also, Albuquerque Magazine J
Love to all and that anonymous donor today.
P.S. So much for the Super Nova. It wasn’t so super after all. They took it out shortly after I wrote this.
I’m very afraid. He is unrecognizable to me this morning and this nightmare has to stop.
Your mom says that today is not looking so good -I want to tell you that you have been VERY BRAVE,and I know you have been praying and bargaining with God,throughout this entire time. She also said that you have a DNR, and I think that is the way it should be-you brought him into this world and it’s up to you to release him from this earth,into the hands of God. I SO want you to know when that happens,part of Ashton will ALWAYS remain in your heart.I’ve heard it said that as long as someone carries your memory,you’ll never be far away…Erin,I have prayed for him,you,&your mom to get through this,and now I am praying for STRENGTH ,and for PEACE,and for LOVE .May the peace of the Lord be with you,and with little Ashton’s spirit
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