If Eli was declining, a lung transplant would be a wonderful option to save his life and give him 3-10 years that he wouldn't have had otherwise. This is not the case with Eli. Clinically (physically and mentally outside of his lung function) Eli is doing great. With Eli being in a mostly stable place now, it is not an easy decision to do a transplant.
Up to this point, both of us have worked full time and visited Eli in the medical center at night. However, in order to give Eli the best chance at survivng and eventually coming home, one of us needs to be with him full time. Despite what Eli has been through, he has the highest spirits, loves life, and is constantly smiling. Eli is at his best, and completely without problems or episodes when he is with his Mom and Dad. This is why we know that if one of us were to stay with him, he would have the best possible chance at healing his lungs and lowering his vent pressures.
Eli's high spirits (hyperlink to a happy Eli video)
I, Eli's Mom, can take an unpaid leave of absence from my job at BP, where I have worked for nearly 11 years. We currently live in Katy, so we will need to move downtown so I can take care of our two dogs and Eli at the same time.
This is where we need your help. I will be losing my income and we have depleted all of our savings managing living an hour away from our son for two years.
Eli entered the world at 3lbs 15oz, gasping for air so desperately his ribs caved in and he turned blue. The hospital staff immediately intubated him and put him on a ventilator.
Eli at 2 months (click the hyperlink to the left to view video)
After 24 months in the NICU and 6+ months in the PCU, filled with constant struggles and uncertainty, Eli is still fully dependant on a ventilator that is set at the highest settings, higher than the hospital has ever had the ventilator set. Despite these massive pressures, Eli has been able to make it this far.
How We Are Going to Save Eli's Life
We are moving Eli from the NICU to the another unit in January of 2015. Eli will have his own hospital room that will have a private bathroom/shower and fold out bed for Mom.
Once we are settled in, we are going to work to slowly wean Eli's ventilator pressures, over the course of a year.
Eli will be able to handle vent changes better because he feels safer with his Mom and I will be watching him so closely that I can see warnings signs before he starts to spiral. I will also be able to prevent any uneccessary episodes from happening because of disconnections.
In addition to helping Eli's lungs heal, I can help him with all of his developments, working with him on Occupational, Physical, Speech and Music Therapies. Having a consistant person that he trusts will allow him to learn more easily.
If we are successful...
Eli will wean his vent pressures and be able to transfer to a home ventilator, and then he can come home. Over time, he will get stronger and require less and less support, eventually coming off of all equipment and living a normal life!
I wanted to send you an update to let you know that I have finally had a chance to make/update our blog website. Please take a moment to check out our website and read through the blog posts I have made so far. I have also updated the website with recent photos and videos.
Please find below all of the updated websites and contact information you will need to stay in touch with us and follow along our journey. Please feel free to share any or all of our story, websites and contact information.
Our Full Contact Information and Websites
Website & Blog Post Website: www.savingeli.wordpress.com
Facebook Page: www.facebook.com/journeyofsavingeli
Email Address: email@example.com
Blaine and I are beyond grateful and thankful for everything each of you has done to help us along this journey and look forward to your love, support, faith and hope along the way of our mission to save Eli!
Lots of Love,
Annie, Blaine and Eli