Friday, November 6, 2015

Home really is BEST MEDICINE

We were discharged yesterday around 11:30am.  We got home and Alexis settled back into her normal recovery mode.  She played with Piano, she played with toys.  She contented herself to roll on the floor of the living room when those two things exhausted her.  She visited with her afternoon PCA.  

She took a bath, and then fast asleep at 6pm.  At the hospital on Wednesday, she had slept hard when they gave her morphine (one of the things she is allergic too - a subject for another day).  And then she woke up hungry and was awake from 10pm-midnight.  Then she woke up Thursday at 6:30am.  That's really not Alexis' typical sleep cycle.  So I wasn't surprised when she fell fast asleep at 6pm, in the comfort of her own bed.

Especially because I was right behind her!  I fell asleep at 8pm.  Of course, I'm now awake because going to bed at 8pm for me is a rare treat!  But to give the body 6 hours of continuous sleep after being in the ICU the night before - I already feel like a new woman.  And the best part, once I go back to sleep in one hour (or so)--- my body will think that's a nap.  My body loves naps.  

Wanted to give you all an update of where we are.  Alexis is out of school today to give her another day of rolling around and playing around.  Yesterday she still had moments where her nose would drain blood - I didn't figure her school, her teachers or her classmates would consider that a 'perk'.  They have excellent nursing staff, but I'm sure it's not a great day for Alexis just to sit in the medical area. So she will have another day at home to relax - then the weekend - then back to school on Monday.


Wednesday, November 4, 2015

Today's Work

Alexis dragged both parents in for a marathon waiting room stent.  If we were athletic (ok, restatement - if I were athletic), we could have finished the Boston Marathon in the amount of time we've been in the waiting room.

We're here at Boston Children's Hospital for Surgery #??  I don't remember.  We haven't been here for Surgery for Alexis in 5 years.  I had almost forgotten how much fun it is.  Well, it's fun because we have some of the best people in the world looking after Alexis.  It's not so much fun that well - surgery just takes a long time.

And we don't do things easy - if Alexis is going under general anesthesia then we're going to have everyone who is anyone look in at her.

First up was ENT to clean out EARS and ear wax - so that Audiologist could get an ABR.  The ABR (hearing test while Alexis is asleep) showed significant improvement in Alexis' hearing on the right side.  This is fabulous news - it is almost 'good enough' hearing in the high frequencies for Alexis to hear without hearing aids.  Very curious!  But really great news.  Even the audiologist had to check and recheck the results she was seeing.  

Next the ENT got back to the Choanal Atresia surgery - removing the blockage that prevents her right nostril from being patent (Passing air through as a normal nostril does).  If you want to know what Alexis has been doing all of her life, push on your right nostril and hold it there.  Yeah, no air passes - that's what she had.  So he opened that up and then he called for a discussion with us.  He said "Catherine, we really need to take out her huge adenoids".  I said, in my normal-can't-be-serious-about-anything, "Take out anything you need, but please don't take out brain cells"  He confirmed because he's a great guy, "I promise to stop before the brain."  Great guy!  We got to talk to him already.

The last person working on Alexis - Dentistry - they were going to do X-rays, cleaning, fluoride treatment and THEN extractions of the front baby teeth that she grinds.  So hopefully she will not be in too much pain.  Evidently we'll 'luckily' get to keep her baby teeth.  And the nurses told me we gotta get ready for the tooth fairy!!!!

So here's a photo of Alexis 'relaxing' in the pre-op holding area.  She was pretty chill, but then again, she's always pretty chill.  The BCH music therapist stopped by to play before she went back - but Alexis was more focused on the fact that we had skipped several meals at that point.  Grumpy Girl.

Hope this update makes you all happy.  Take care!  We'll be in overnight!
Almost Happy!

Grumpy about no Food.

Additional update:  they extracted 8 baby teeth!!!