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. 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 circumstances in perspective. Regardless, we know 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 several months. In hindsight, it probably started last fall after we returned home from her Make-a-Wish trip. Regardless, her body is breaking down. Because she is a master at hiding just how horrible she is feeling, I do not think we realized just how bad her health was until she and I were here for a few days. Her tests from yesterday were all excellent. There is no infection or issue with the functionality of her port. Her SMA compression has not worsened, and the anastomosis is still intact. 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. 

Last night, our new nurse, Anna Lou, was precisely who Jayde and I needed. This morning, we met with 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. I've advised my mother, "You really need to stop praying, I hope they don't find anything wrong and instead pray we have knowledgeable doctors who can figure out why my daughter is so sick."  

After my post yesterday, we ventured off the 10th floor for a change of scenery. Though it was a short adventure because Jayde's tachycardia is still out of control, it was a needed change. We enjoyed dinner outside and enjoyed a few brief moments at my favorite place in the hospital. In the meantime, we will be here a bit longer.


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