Nurse’s Blog 15 - full of grace
Born November 12, 2011. Current date: December 12, 2011. That makes her 1 month old today.
This is my first Nurse’s blog since moving to the Rotary Flames House. For those of you that do not know, I previously worked on Unit 47 at the Foothills at the Intensive Palliative Care Unit (mainly for Adult End of Life, but also general/medical as well); now I have moved to the Rotary Flames House which is considered a community Children’s Hospice (on top of Pediatric End of Life we also do respite and transitional care, usually for kids with disabilities).
There have been so many wonderful kids and opportunities for me to write about, but I guess this one has impacted me the most.
She came to us from the ICU where they had tried to do everything within their means to keep her alive: Nasogastric feeding, intravenous treatment for hydration and medication, intubation and more. She had increased secretions and increased seizures right from birth. Placenta abruption causes much like a suffocation or loss of oxygen within the womb and a need for emergency c-section must be done…it was too late, due to such loss of oxygen there was severe brain damage and hemorrhaging. At this point mom and dad have to make a choice to continue all means, but also continue all the uncomfortable symptoms that come with it, or to do comfort care only. Understandably, this is always a difficult choice and everyone suffers differently, but we always hope that these choices are very calculated, thought out and supported immensely.
She came to our house (RFH) a week after trying everything they could for End of Life Palliative support, but it has been such a rough journey for mom and dad that they have decided not to stay while they wait for her to pass, while also deciding for her not to be artificially fed or hydrated. Nevertheless, they have visited a few times with and without family friends. We the staff have taken it upon ourselves to provide that extra love since she is by herself, watching her pass. She has been such a little trooper, with such a strong fighting spirit. Despite her agonal gasps, nasal flaring, changing in breathing, extreme weight loss, she has stuck in there.
Whatever this little angel’s purpose is in life, she seems to be doing amazing things in such little time. She has already changed the hearts of many, including my own. I feel like maybe she’s waiting for a certain someone to come and tell her it’s ok to go…whenever it is that she is supposed to go, I hope she isn’t suffering and that we aren’t undermining any possible pain due to her inability to tell us so.
Sometimes it’s hard to tell why people are born with disabilities or life limiting illnesses, but for me I like to think that they’re born not for themselves, but for us, to change us, to mold us, for life experiences and lessons. Thanks sweet pea.
