Pre-Op

Hi!

We had a long day at the hospital today. Surgery time tomorrow is 7:30am and we have to be there at 6am. 

We had a pre-op admissions thing - so many questions. I can tell I've done this too many times.  I am starting to lose my patience.  I really wish after so many surgical experiences we could earn some kind of card.  Or at least some kind of alarm on her medical record that says this isn't our first rodeo - it is our 70th or so.  For real.  I can't believe I have to be treated the same as a person who is preparing for their kid to go under anesthesia for the first time.  The anesthesia part of our day feels like a joke.  He actually said they take her back and put her under using her trach and then they would give her an IV, that way she won't feel it.  

Huh, so when she's under anesthesia, she can't feel anything?  Interesting. He also said they would be there with her - the whole time!  Whew, that's a relief!  Thanks, doctor. 

I have to sit there patiently and politely, listen to him and let him do his thing. Probably because there is some policy that says he has to - regardless of how many times the poor parents have had to sit there and listen to the same thing.  And I'm not poking fun of this particular person.  Or first timer parents.  Although I did feel bad for him.  My face might've been talking, even though I wasn't.  Ugh, I promise I don't want to be crappy.  I know we are not the norm.  I'm guessing most parents aren't career hospital parents like us.  

He asked me/us if we had any questions.  He had to ask Tom twice because he wasn't even listening. Haha!  I probably sound horrible, but I can't help but laugh.  It feels like when you're on a plane for the 100th time - and you can hear them doing the safety procedures in the background.  You've heard it all before, how much focus does it really require?  Anyway, I thought to myself, when was the last time I had a question for anesthesia?  Years.  Like 14 of them.  I'm pretty sure I've never asked a single question.  I can promise you I've never asked if they are going to just leave her there while they go eat breakfast.  Although, tomorrow I should ask our anesthesiologist (we will have the same one we've had since August 2017 and we're buds now, haha) for some "good" questions I could ask the next one at her next surgery.  Something very doctory - something hard.  Haha!  That would be so funny.  Ahhh, medical burnout humor.  Okay - for real though - no sarcasm in this statement - I fully trust that the anesthesia team is fully capable of taking care of her.  This is why I joke and poke fun.  All in good humor and to keep me from losing my shit.  Haha!  

Anyway,  she got an echo.  

Darnit, she still has the same heart defects she had last time.  Nothing new there.  And she had to have labs done, which actually was the best it has ever been.  Whew, this girl can put up a fight!  But, she was way better today (and the nurse was amazing) and I hope that's a good sign for the future.  

This is her feeding herself, just because.  She's really so cooperative and patient.

She had to have a Covid test.  Funny, they don't test if you've had it within 90 days.  Her positive test was like 92 days ago.  But, she didn't complain.  Anyway, that must have been negative because they say they only call if it is positive. 

She also got an EKG and had her pacemaker interrogated.  She has about 16 months left on her pacemaker battery.  Alexa, remind me to follow up on that in ten months...  At the end of the day, a nurse came in to do a "trach safety check."  Okay - I will admit that I had to talk to myself and tell myself not to take it personally and be nice.  She asked me all these questions about Harlie's trach size, etc. and filled out this form.  I know this form well.  It gets completed and posted at her bedside - at every single hospitalization.  Anyway, she told me with a real energetic and excited attitude, that I am supposed to carry this clipboard around with me "just in case the trach comes out while you're here, this will help in an emegency."  

 

Wow.  So, that form on that clipboard will help me reach in her bag, that I have packed appropriately and carry with me, grab the spare trach and put it in her neck?  Fascinating.  I don't know how I've managed to keep her alive without it.  

You know, the root problem (pretty much in life right now) is that you - meaning anyone - is assumed to be too stupid to take care of yourself.  

That form isn't for me. I'm not the one that needs it.  I already know all that information.  That form is for nurses/respiratory therapists who need that info to properly stock her room with the supplies she might need in an emergency.  So, I don't need to be carrying it around with me.  Especially on a clipboard! They will fill one out tomorrow.  But, what did I say to this young lady who seemed so excited to "help" me?  Thank you.  Serenity now, insanity later. 

Anyway, Harlie came downstairs one morning a while ago and found Tom and I doing yoga to a you tube video.  She took over my mat and did the rest of the yoga session in my place. I didn't argue - I don't love yoga.  Since then, she sets her alarm to get up early and do her yoga.  She figured out that she can't hear her alarm in the morning.  She's tried several.  So, she got this one from Brandy (her nurse) and now she puts it to her face so she can feel it alarm.  I love how she problem solves and goes on about her day like it is no big deal.  

Well, that's it for tonight.  Tomorrow morning will be an early one. 

Thanks for the love!

Christy xo