In A Perfect World, There Would be More Answers and Less Questions

 


I am beyond grateful to have my sister, mom, aunt, and mother-in-law's constant contact and their help behind the scenes, being my pillars, supporting me so that I can better support Jayde. It truly does take a village, and these women are my tribe. I know my post from last night was not easy to read. It was challenging to write and share. Yesterday was mentally and emotionally messy. In life, sometimes, you need to create more chaos to clean up the original mess. Jayde is still struggling to process everything happening inside her body right now, but she is mentally doing somewhat better. Witnessing lifeline helicopters flying in and out, at all hours of the day and night, helps keep her current circumstance in perspective. Regardless, we are secure in knowing she is where she needs to be to receive the best possible care.

To help everyone following Jayde-Rhiannon's journey better understand how we arrived here, she has lost twenty-four pounds in the last three to four months. Her body had begun breaking down. I do not think we realized just how bad it was until we were here for a few days. Her tests from yesterday were all excellent. There is no issue with her port or the SMA compression worsening. Because of this, her surgical team has tapped out. Her amazing primary surgeon Dr. Jelin is still checking in but medical has now taken over her case. 

Our nurse, last night, Anna Lou, was new to us, and she was precisely who Jayde and I needed. This morning we met part of Jayde's new medical team. We will meet the rest this afternoon. This young man possessed qualities every doctor should strive for, attentiveness, compassion, and thoroughness. More testing is scheduled for tonight and tomorrow. The field of what is wrong with Jayde has widened. It seems bizarre to look at the possibilities and say, "I hope it is this one," knowing it may not be any of those options.

After my post yesterday, we ventured off the 10th floor for a change of scenery. Though it was a short adventure, it was definitely needed. We enjoyed dinner outside and enjoyed a few brief moments at my favorite place in the hospital. In the meantime, it looks like we will be here a bit longer.





Comments

Post a Comment

Popular posts from this blog

Allies of Love

Image
While running errands a few weeks ago, I ran into an old acquaintance. We were catching up with the usual pleasantries. “How is your son? Does he have a steady girlfriend?” I replied, “No, but he and his boyfriend have been together for more than a year and a half.” With a horrified and shocked look, followed by a snarky reply, she inquired, “Well, how is that?” I gave a quizzical glare until she finished. On some level, my mind knew where her comment was going, “Having a gay son?”   After what I am sure was an equally, if not more, shocked look in my eyes, followed by an image in my mind, playing out like a seventies cartoon of a baseball hitting her upside the head. I replied with, “I don’t know. What is it like having a heterosexual son?” My response left her speechless, and we soon parted ways.   Since that afternoon, I have not been able to shake the insensitive encounter from my thoughts. I am unsure if it was the underlying tone of her question that offended me. Perhaps it w
Read more

We're Off To See the Wizard

Image
  The elevator speaks with the sweet voice of a child. The brightly colored art is familiar, like an old friend. While we walk in together, as we have countless times before, she voices, "I am nervous." "I completely understand. After your last experience several weeks ago, of course, you are." She expresses her anxiousness again as the nurse asks questions and takes her vitals. I assure her, "Momma Bear is here. We've got this." Sadly, this was once the only place, other than home, where she felt comfortable...at ease. The place where people did not stare, question, or judge. A place where she knew she could be among her own kind. This morning, while getting dressed, the phrase, "We are off to see the Wizard," was streaming through my mind. Go ahead, try reading that again without singing it. We have always thought of Jayde's cardiologist as the wizard of her medical journey. He has opened doors we never could have as a parent and patien
Read more