This weekend we learned of the loss of a sweet PURA soul, Harriet. This princess was not even yet 3 years old. When pneumonia struck for the second time this summer, she simply did not have the strength to fight anymore and gained her angel wings. This is a brutal reminder of the uncertainty of life with a PURA baby. How fragile it can be. Yes, life in general can be thought of this way that is certain. Every parent has fears for their children. However, life with a medically complex PURA kiddo is an entire different world of fear. One that frankly you cannot understand unless you are in it. Much like we didn’t understand before August 2018. I can only imagine the heartbreak of her family as they watched her decline, knowing there was nothing they could do for her other than hold her hand. Nothing they could have done to prevent it from happening. It is reminiscent of a pneumonia-based hospitalization of our own from which Ryker recovered, and morbid reminder that Ryker may not always be so lucky.
Every slight oxygen drop, cough or runny nose makes us hold our breath as we wait to see how bad it will get. Something as ‘minor’ as a common cold for a typical child has landed Ryker in the PICU with intubation orders signed ahead of time. Every pulseoximeter alarm makes you wonder if he’s okay or if it is the start of his demise. An endless, solitary eggshell walk which we careen through blindly on a daily basis.
Hospital admissions are terrifying, draining, sleepless experiences. Sticking out an illness at home is also terrifying-but keeps us from having to split up our family so someone can stay with Ryker and someone can stay with Chase. I remember the first time Ryker was hospitalized after his initial NICU stay. We went from the ER to the PICU at the time as a ‘precautionary admission’ given his respiratory vulnerability to ‘observe’ him. Within 12 hours his chest X-ray went from clear to a collapsed lung. At one point his oxygen level dipped into the 20’s, prompting a somewhat hurried intubation. We remember how puffy his little face got. We remember how miserable he was when he came off intubation and had to withdraw from the strong medications. We remember the admitting doctor that we had spoken to on the phone prior to transporting him to the hospital telling us that we could expect to explain Ryker’s condition no less than 8 times from the initial hospital ER transport up to admission.
As PURA parents, we constantly have to have our heads screwed on straight- knowing that even in the most medically fragile points in Ryker’s life, we have to be able to advocate for him and explain his condition and his “normal” baseline to anyone he encounters. Reality? It sucks.
Ryker’s Rally Point 