Friday, September 28, 2012

3 years FAC

The other day I walked into our Family Advisory Council meeting and noticed a cake. Thought, hmmmm someone's birthday? In fact it has been 3 years since Phil and I, and a few other parents have been a part of the FAC at our hospital. We were picked to be on this council to help the hospital staff see what it is like to have a child going through so much, to be able to advocate for those parents, children, siblings and voice the compassion that needs to be in a hospital. We have seen so many changes, have voiced opinions and shared ideas on many projects including the construction of the pediatric ER and peds units, materials that are important for admission, discharge, and the many procedures that our kids have gone through, and of course my personal baby was bringing Open Heart Magic to the hospital. Driving over, I had thought what can I bring to the FAC anymore? Joey is 4, Josh has been with the Lord for 3 years, I feel like it is all slipping away. We take summers off of these meetings and maybe that was why I felt like I was so out of touch with things. In our meeting there was a discussion about pain managements and it is amazing how a topic can just be stated and memories flood back like it was yesterday, things you thought you had forgotten, not the memory as a whole but the nitty gritty details, oh how those are engrained in my head and heart forever. It is like a word association game: you say apple, I say banana. You say pain management I say call IV Therapy immediately. You say suction: I say don't go past 5. All it takes is one word and you are back in time, holding Josh (man was he fiesty, he didn't get his nickname of "manimal" for nothing!), watching his "popeye face", holding a pacifier in his mouth as he sucked feverishly, watching his tongue move side to side in his mouth as his eyes go side to side in wonder of when it will be done, the initially scariness of not breathing, the need to be suctioned, the kicking of feet ("straight kickin' boo" was another term of endearment), putting so many bean bags of pressure on him that he couldn't move. Oh I could really go on and on, you say pain management and I am there with Joshua reliving it all. And that is why these meetings are so important. We have lived through it all good, bad, indifferent, it has been hospital life, home life, and all that can be in between. We are still advocating for Josh, for any other child that might have a stay long term or short, heck it doesn't have to be a kid with a chronic illness or syndrome it could be any kid going to the ER that has the flu or broke an arm. It my chance to make the stay shorter, the anxiety lessened, and the hospital not so scary. As I told the FAC as the bottom line of pain management. All I wanted to do was be mom, to be the one to comfort to be at the head of his bed, to show that I wasn't scared so that he wouldn't be, and to know that my opinions were taken into his plan of care because I am his mom. Thank you Josh for allowing me to always be your mom.

1 comment:

Christy Gumbach said...

You said word association, so you lost me at cake-what kind was it?! Just kidding, you guys are doing great things for all kids at CDH.