I am overwhelmed with the amount of support, ideas and outreach coming in from my last post. We live in an amazing community and are so blessed to know each of you. Since I have received so much interest in assisting with the idea of the chronic unit I wanted to expand on what it would actually mean to Bella, us and those following our path.
The idea for this did not surface with me. It has been an idea that has been expressed by nurses and parents that came before us. I only know from a brief meeting with the Director of the NICU about a few details of how it could become a possibility sooner rather than later. I have no idea what the needs are to get it done, why it hasn't been done already or where the project currently stands. I was told that there is a wing of the hospital that is being used for over flow from another floor but actually belongs to the NICU where this idea could easily be facilitated.
For Bella this new wing would hopefully mean reorganization of a care team that gives us more continuity. It would hopefully mean that she is only cared for by a staff that is comfortable with her chronic issues. It would mean that she would not see a new Dr every 2 weeks and there would be a care plan created and oversaw by just one person. It would give us a team that celebrates with us her progress which cannot be compared to that of other babies her age. It would mean a larger room for her where we would have room for swings, toys, activity mats and developmental devices to help her improve. It would give her a space where she can not only be a hospital patient but a baby. It would be a nursery, not a small space created for short term stays where the walls start to close in on you. Most importantly it would give her a long term option to manage her care if for some reason she is not ready to come home within a year.
For us it would mean that we can form long term relationships with her Dr's that we can trust. It would hopefully mean that every 2 weeks we do not get the "your daughter is going to die" speech from each new face. It would hopefully mean that they would just allow us to focus on being her parents today because we do not know what tomorrow will bring without the constant need to tell us she will not make it. It would give us a place to sleep so that we could spend the night with her. There are no options besides a small recliner crowded in the corner now. It would give us private bathrooms and a desk for work space so that we could work from the room or maintain daily tasks. It would give us a place to just be her parents and not just a visitor at her bedside. A place to play, a place to learn for her care, a place to build memories, a place to bond with our child....Don't get me wrong we are doing all of those things now but it is a challenge daily to work around the limited space and the constant coming and going since we are not set up to stay there with her.
The solution is simple and the results so rewarding. I don't know why this has not been done in the past. We can all speculate as to various reasons. I don't know why we have heard that "scope of care" is 1 year, the Pediatric ICU is not equipped to handle her needs and that our only option if she should not be ready to come home at that time would be to relocate our family to another state and take Bella away from all that has become familiar to her. I don't know why we were told that a facility with fewer specialists, fewer therapists and higher infection rates is in her "best interest." I think Vanderbilt would be selling themselves very short to say that they do not have the resources available to handle her care. I do know they have done it in the past. I don't know why it is met with such resistance...However I do know that I will do everything in my power to give her the best possible outcome, to enjoy being her Mother in the process of doing it, to give her a quality of life while in the hospital for however long that should be.
I want to be clear that this idea is something that has only been pitched. I am not directly tied to any of the process of getting it done so no idea of where it actually stands. I am simply stating the need for it from a parental view point and encouraging the community to reach out with us to try to get this done.
Thank you all again for your support, for your compassion and for your prayers.
Much love to you all
Telisha
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