Sunday, April 14, 2013

Shared Perspective

I'm someone who likes to read articles in medical journals on a variety of different topics. Sometimes I'm looking for articles that are specific to Jack's disease or issue at hand, but mostly I enjoy reading articles that deal with the issues of parenting a chronically ill, medically fragile, disabled child.  I'm always intrigued by studies of kids like Jack and parents like me. I like to see how my experiences line up with the experiences of those similarly situated.  

Recently, I came across a PubMed article that I wanted to read, titled Experiencing the pediatric intensive care unit: perspective from parents of children with severe antecedent disabilities.  Because I could only get the abstract on PubMed, I emailed the physician who authored the article and asked if he could send me the full article. Within fifteen minutes of sending the email, I received a response from this physician via his iPhone that said he was currently out of town for work, but he would send me a PDF in the next day or so.  As promised, he sent me a copy of the article a couple of days later.  Impressive, eh?  

I read the article and it was spot on from my perspective as well.  What was remarkable to me was how some of what parents shared in this study mirrored what I shared in my "Dear Future Physician" letter. Definitely, a shared parent perspective.  It's heartwarming to me that the medical profession even does studies like this - that they care enough about how parents feel to want to ask the questions and make changes based on what they learn.

Here is a link to the ARTICLE if you are interested in reading it.

Segueing from the PICU experience to the hospital experience in general, for those not on Facebook - St. Louis Children's Hospital has been part of a six-part docu-series called "The Frontline for Hope" that "takes you behind hospital doors to share inspiring stories of the doctors, nurses, patients and families" at SLCH. The series follows the journeys of several different patients and their families.  It's a remarkable series that is aired locally in St. Louis, but the 20-minute episodes (sans commercials) are available online the day after the show airs.  As strange as it sounds, watching the series really makes me miss St. Louis Children's Hospital.  Being at the place that has cared for Jack most of his life and where I spent so much time the first year of his life, gives me such a sense of comfort.  Every time I walk through the doors of St. Louis Children's Hospital I feel like I'm "home". I'm at a place where the doctors, nurses and staff are the very best, where they know my child and where they know me.  Becoming attached to a hospital isn't something most people experience (or ever want to experience), but those of you with chronically ill children completely understand where I'm coming from.  It truly makes me sad that we've made the decision to not make any more trips back to SLCH with Jack.

In any event - if you are interested, you can watch the episodes HERE.

And, just because I'm feeling nostalgic, here are a few pictures of Jack taken during his five month PICU stay at St. Louis Children's - where decisions were made that sent us on this journey that is beyond anything we expected, but which has enriched our lives beyond measure.

I think Jack was the only kid in the PICU who was vented via an ET tube and was not sedated. At the time, we didn't realize that the reason he never tried to pull his ET tube out was because he didn't have the strength to do it (the wrist tie-downs weren't necessary, but they didn't realize that at the time either).

The day he was trached 

(if you only knew how long it took me to make that decision - one of the hardest decisions of my life)


ssouth said...

143I'm really enjoying the Frontline for Hope too, though I don't think I've made it through a whole ep without tears. In the last pic of Jack on his trach day he's giving a look I've seen from teenager Jack. I'll have to read the article the doc sent though in general, reading medical journals sounds like work. It's usually Greek to me. Love you and hoping calm rains down on you today.

Anonymous said...

Love those pics Ann. I don't think I have ever seen them. Hugs to Jack, Whitney