Tuesday, October 28, 2014

What A Calamity

What can I say about this week?  If I had to say one thing right now... at this exact second... it would be, "Holy crap... it's only Tuesday........".  It can only go uphill from here?  Maybe?  Please?

Yesterday, Monday, Quentin (my three year old) had a doctor's appointment with his audiologist.  While on the way there, I had one of those moments.  It happens to us all at one time or another (I sure as hell hope I'm not the only one).  I felt this nagging, sick feeling like I had forgotten something.  I tried to tuck it away but I couldn't rid myself of it.  Until finally it hit me.  Like a punch in the gut that knocks all the wind out of you.  S***T!  Did I set up the scopes for Mallory that I've been raving to everyone about for like the past month?  By this I mean her airway scopes with ENT and pulmonary.  They were to be coordinated with her surgery today while she was already under anesthesia.  

I'm pretty good about making the phone calls I need to make when I need to make them to get everything set up.  So I kept thinking that it must be taken care of.  It had to be.  Right?  I call our trach/vent coordinator to see if maybe she can investigate this for me.  I left her a message and then spent the next ten minutes asking myself questions.  Out loud.

"Was I supposed to call and set that up?"

"Didn't I discuss this with someone and they said they'd take care of it?  That had to be it, because I wouldn't forget this."

Then I got angrier with myself... out loud.

"WTF is wrong with me?  How could I let this slip through the cracks?"

"How could I tell everyone under the sun she was being scoped but didn't bother telling the people who are supposed to do it?  Beat yourself silly!"

I took Quentin in for his appointment, where he received a new, brightly blue colored set of hearing aid ear molds.  He went through another hearing screening and we discussed what to look for if there's more hearing loss.  We also discussed when may be a good time to start considering cochlear implants.  The appointment went pretty well, although, I seemed to have forgotten that making an appointment at 1:30 when I'm 45 minutes from my house makes it near impossible for me to be home when my kids get home from school.  I didn't get out of there until 2:40, which is about when my first two boys come home.  I'm telling you, I think someone needs to come and beat me with a smart stick because I'm losing it!

Driving home, I found I had a voice mail.  The one I had been dreading.  Nope.  No ENT.  No pulmonary.  No one set up for a scope and at this point it's too late.

I get home and unleash my anger at myself on my husband's apparent inability to start dinner while he's sitting on a toilet.  Then, I found rational Cathy again and forgave myself.  No matter what, Mallory was going in for surgery and we'd deal with the scope stuff later.

Begin today.  I get up to lots and lots of prayers and thoughts on Mallory's FB page in regards to her surgery.  It always lifts me up and makes me feel a little less alone in this.  She's got an army behind her!

I get up early enough to give her a bath, do a trach change and take a shower myself.  She wasn't allowed to eat solids, so we were trying to give her some apple juice here and there.  I start packing her bag, followed by my bag.  I spent time straightening my hair... that's always the easiest solution for me when I know a morning shower won't be available and I need non-Ursula hair.  I made myself a tomato/avocado/cucumber sandwich and packed carrots and ranch dressing to snack on today.  I was proud of myself.  I got out the door right when I wanted to, 10:45 on the dot.  I needed to be at Children's at 12:30 but I knew I needed to stop and get gas first.  After the crazy that was yesterday, I was proud of my accomplishment to get out of the house on time and with everything I needed for an overnight hospital stay.

We made our hour long drive up to Milwaukee.  It was a peaceful ride, filled with some good music and fairly easy traffic.  Mallory took a nice nap too.  Check in at day surgery was short and sweet.  I answered all the questions and signed the consents.  I had Mal's go bag ready and her g-tube attachment all ready for her goofy juice.  I like when things roll nice and smooth.  And she was just chillin'... trying to take off her leg bands and playing with a pack of baby wipes.

Then, the anesthesiologist came in.  He started to tell me that there might be a delay in the surgery.  I was bummed about it, but as long as we still had a green light, I wasn't going to complain.  He explained his part in keeping her comfortable and sleepy and then walked out.

It seemed like forever before anyone came back in again.  I was worried that we'd be sitting there for hours before her surgery.  Then, amazingly only twenty minutes or so later, her hand surgeon came in.  He checked out her fingers and explained what he'd be doing.  She so nicely pushed his hands away each time.  Sassy pants.  As he was leaving the room he said, "shouldn't be too long now".  Famous. Last. Words.

We sat there for about another 45 minutes.  Mind you, Mallory hasn't eaten all day long.  She's getting tired.  She's getting angry.  I tried to hold her but she was gouging me with her evil witch finger nails.  The nurse would bring her some toys which would entertain her for a few minutes but then she'd just try to drop them through the prison bars.  She tried to choose this moment in time to learn how to roll.  I don't know if she was trying to escape, to make herself as thin as possible and slide through the bars... but of course I had to take a picture.  What it really boils down to though is that I felt so sorry for my little lady.  A little less when she repeatedly slapped me in the face, but yea... even then.

The nurse walked by our room and saw me bouncing Mallory on my hip.  She told me I could walk her around the hallway to give her a new view while we waited.  So I did that.  She seemed to perk up being able to look at some new things.  We went for a walk down the hall and as we were turning around to come back, I saw her surgeon and the ICU surgeon.  I'm not gonna lie.  They didn't look like they had a happy note to share.

They both explained that although the surgical team was all ready for her, there had been some unexpected intensive care patients admitted.  Which left Mallory with no bed post surgery.  Because she has a trach, she has to be in the ICU to recover.  "So it was a bad note." (Adam Sandler.. The Wedding Singer.)

I don't know if I was just feeling tired or my contacts were bothering me or if I was really weepy, but my eyes felt quite watery.  I tried my best not to cry.  After all, this wasn't anything life or death.  We just needed to reschedule.  Everything that leads up to these surgeries though always takes so much effort and planning, I think I felt really defeated with the news.  Mallory's face in this photo says it all.

An ICU lead coordinator (I think) came down and talked to me as well.  Apologized again and asked me if there was anything she could do or if I had questions.  Hmmm... yes?  Can you feed us?  Can I get like 20 bucks for gas?  Can you just please, please find her a bed so we don't have to drive all the way back home?  "No, no worries... these things happen."  That's what I said.  Or at least the gist of it.  She thanked me for not being angry.  I told her angry does no one any good.  I asked her if I was good to go and we left that place.

Is that the end of my troubled day?  No.  Only minor things came after that, but it was some salt in my open wounds.  I missed my exit on the high way because of a stupid construction detour.  I'm not quite sure how far that put me out of my way but it felt like the longest drive home ever (and I hadn't peed since 12:15 which my bladder was truly upset about).  Then, my 16 year old son called me to ask when my eight year old should get off the bus.  Usually it's like 3:50ish, but it was already 4:15 and he still wasn't home.  I called the school who told me that there was a new bus driver and I should call the bus company.  Well, on that phone call, I missed another exit because I couldn't listen to my GPS.  Fun stuff.  When I finally got home, I started to unload all of our meticulously packed things only to find that the bowl of oatmeal I had prepped for her breakfast in the morning had lost it's lid and was now spreading all over the bottom of her bag.  Yep.  True story.

To sum it up... this has been the most exciting two days of my entire life.  Let's hope next time is just as much fun?

(P.S.  Some have been asking about a rescheduled surgery date.  I don't have it yet.  Hopefully I'll have some kind of idea tomorrow or by the end of the week at the latest.  I'll keep everyone posted!

P.P.S.  No children went missing in the making of this blog.  They all made it home safe and sound... both times!)

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