Sunday, August 21, 2011

My Day

Get up at 6:30am and drive forty-five minutes to my Aunt's house.  Drive my Aunt to Cracker Barrel and enjoy a nice breakfast with her. Drop my Aunt back at her house.  Drive home to pick up the girls to take them out clothes shopping for college (because, you know, they don't have enough clothes already).  Spend a couple of hours shopping. Take the girls out to lunch and then head home.  Once home, clean bathrooms, do laundry, straighten up the kitchen, suction Jack (after washing my hands, of course), feed Jack lunch, more suctioning.  Around 3:30pm, start getting Jack ready to go out to meet my family for a sending-Mary-off-to-college dinner.  Get Jack in his wheelchair.  Notice Jack turning purple.  Bag Jack with oxygen until he is pink again.  Hook Jack back up to his vent and watch him turn purple again.  Pull out Jack's trach while he's still in his chair to see if he has a plug.  No plug.  Put the trach back in and continue to bag Jack.  Change out the vent circuits because the Peep valve is making a strange noise.  Hook Jack back up to his vent and watch him turn purple again! See Jack look at me with eyes that say "please do something ... I'm dying here" (literally).  Bag Jack again and decide that Jack is not going out to dinner with us.  Get Jack back in bed and lay him down flat.  Color starts returning to his face.  Mark and I look at each other and are thinking ... want to flip to see who stays home with Jack and who goes?  Decide that I should go because it's my family.  I send Mary ahead with Hilary and Eric otherwise we are going to be late to the dinner that I planned and asked everyone to come to.  I wait about fifteen minutes to make sure Jack is going to be okay.  I look at Mark and say "it's pretty bad when you are afraid to be home alone with your own kid".  I leave to meet my family for dinner, trying to hold back the tears as I drive.  Have a nice dinner with my family, keeping a close eye on my phone the entire time just in case Mark calls.  Arrive back home.  Jack is pink and happy! Vacuum the floors, do another load of laundry, get Eric in the shower and then to bed.  Exercise thirty minutes on my stationary bike.  Get Jack fed, suctioned and ready for bed.  Mop floors.  10:30pm .... sit down!

Yep, I'm definitely living in the moment these days!

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As for what the heck is going on with Jack - I haven't a clue.  Worse yet, I don't have any confidence that there is a doctor in this City who can help me figure it out.  But, I have to try. I'm starting with the ENT because I want to rule out any granulation tissue at the end of his trach tube given that his episodes appear to be positional.  If it's not that, I guess we'll see the pulmonologist next.  If I don't get anywhere here, we'll be in St. Louis in seven weeks and maybe someone there can help us.

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Pictures from dinner .....







Have a great week everyone!


4 comments:

Christy said...

Oh, Ann. That sounds very scary! And it sounds like you had kind of a sucky day. I really hope whatever is up with Jack is an "easy" fix. I can't imagine that kind of stress.

I hope you were able to sneak in a drink at some point during the evening. I say live in the moment if you need to. Whatever gets you through the day. And I will send positive vibes that you get some easy answers and soon.

Hugs to you, my friend.
-Christy

Rachel said...

Wow, definitely living in the moment! I'm so sorry Jack is having issues -that is very scary, and I hope you all are able to get answers.

Susan said...

Oh Ann, it's no mystery you are exhausted at times. The emotional tole alone of that experience, let alone all the other things you did and do on a daily basis. I'm so sorry that Jack and Mark didn't get to come. I am glad though that he was fine when you got back. It's sounding like a trend that needs to be addressed. I really hope the doctors figure it out. Hugs.

ssouth said...

Yikes! Scary stuff. It really does sound like granulation or something flopping over his airway. Does it happen when sitting upright in bed? Does the chair vent need a tune up? Sorry, I'm sure you've already thought it all through. I hope you find a solution soon so that Jack can be a part of family fun without added stress! I wonder what it would take to fly the STL docs out to you for once? And put a mop in Eric's hands! :)