I hope that most readers of this blog have been thinking no news is good news all day. Sarah wouldn't want you worried. Mostly, we've been waiting to resolve the pacemaker question - but it's amazing how what you'd think was a pretty idle day can be so full and pass so quickly.
So get to the point, right? Sarah's going to need the pacemaker, and this will most likely happen tomorrow - hopefully early if she has to go without anything by mouth after midnight. A great deal of medicine is based on odds and percentages - the so-called evidence base for doing things. Oddly (so to speak), the odds don't always make the decision for you, because there are too many factors to consider. Anyway, when one of the risks is sudden death, the odds don't matter, because the safest course is the only course. So the decision becomes pretty obvious.
But, the challenge becomes convincing Sarah of the necessity of one more procedure, one more scary, lonely trip to the OR, one more painful site on her body - and convincing her yet again that she did nothing to deserve this. I'm going to need a pacemaker myself before we are home again! Or a heart transplant...
Health care decision-making is also like opening up a set of Russian nesting dolls or peeling an onion. So now that we have decided to have the pacemaker, do we want it just under the skin of her upper left chest (simpler to put in, less post-operative pain, easier to take out for battery changes) or deeper, under the pectoralis (chest) muscle (less visibility to the device, less vulnerable to bumps, less of a daily reminder of the nightmare that Sarah is still experiencing). On this decision, the doctors have no opinions of their own - totally up to us. How empowering! Needless to say, we haven't quite resolved that one yet - you'll have to tune in tomorrow to find out.
Now the good news - we're out of the ICU and back in the Intermediate Cardiac Care Unit where we started here on January 7 - back to a larger room with its own bathroom and nurses with whom Sarah began this difficult journey. It feels like an important step toward home.
But the Teddy Bear/Dog/Bunny controversy remains...Sarah seems to have no difficulty simply accepting a tri-species creature with features of all three, but others seem to have strongly held views. Scroll down to the bottom to view photos of Barry; weigh in or draw your own private conclusion...
So get to the point, right? Sarah's going to need the pacemaker, and this will most likely happen tomorrow - hopefully early if she has to go without anything by mouth after midnight. A great deal of medicine is based on odds and percentages - the so-called evidence base for doing things. Oddly (so to speak), the odds don't always make the decision for you, because there are too many factors to consider. Anyway, when one of the risks is sudden death, the odds don't matter, because the safest course is the only course. So the decision becomes pretty obvious.
But, the challenge becomes convincing Sarah of the necessity of one more procedure, one more scary, lonely trip to the OR, one more painful site on her body - and convincing her yet again that she did nothing to deserve this. I'm going to need a pacemaker myself before we are home again! Or a heart transplant...
Health care decision-making is also like opening up a set of Russian nesting dolls or peeling an onion. So now that we have decided to have the pacemaker, do we want it just under the skin of her upper left chest (simpler to put in, less post-operative pain, easier to take out for battery changes) or deeper, under the pectoralis (chest) muscle (less visibility to the device, less vulnerable to bumps, less of a daily reminder of the nightmare that Sarah is still experiencing). On this decision, the doctors have no opinions of their own - totally up to us. How empowering! Needless to say, we haven't quite resolved that one yet - you'll have to tune in tomorrow to find out.
Now the good news - we're out of the ICU and back in the Intermediate Cardiac Care Unit where we started here on January 7 - back to a larger room with its own bathroom and nurses with whom Sarah began this difficult journey. It feels like an important step toward home.
But the Teddy Bear/Dog/Bunny controversy remains...Sarah seems to have no difficulty simply accepting a tri-species creature with features of all three, but others seem to have strongly held views. Scroll down to the bottom to view photos of Barry; weigh in or draw your own private conclusion...
Now I may be a little prejudice but it looks like a dog to me! Kisses to Sarah!
ReplyDeleteWhile I'm distraught to hear what Sarah's been going through, I couldn't be more glad to also hear of the progress she is making! I'm sending all my love and positive energy her way and hope this gets better and easier for her every day. She is a truly beautiful person, with a big heart and a magical way about her. She'll always be Little Miss Diva, and the world is a better place with her in it.
ReplyDeletePlease give her love from all the Walls. She's in our thoughts and prayers!
Oh...and clearly, Barry is a Teduggy! :)
I know whatever choice is made will be best for Sarah! Lots of love and healing thoughts sent your way!!
ReplyDeleteYou are such great parents, you make great decisions, this is a good decision. Hang in there, we love you guys!!
ReplyDeleteSarah, our nephew, Joshua (Joey's cousin) has a pacemaker too. He had to be very brave just like you Sarah. Now, he sometimes forgets it is there :) You and he are two bravest people I know!
OK, so getting back to a very important matter....I truly think it is a dog :)
love, love, love you all!
Mary and the Emily Lane Gang
To Sarah and all the Cooleys. You are all truly remarkable people, especially you Sarah. Stephanie told me of this blog and I've been following it for the past few days. Sarah, you and your whole family are in my prayers. I have no doubt that you will come through all of this with flying colors, and then go out and teach us all some more very important things about life. All my love to you, Donna Young
ReplyDelete