Thursday, July 15, 2010

Post-Op Day 2

She's awake!  She woke up right as we got in this morning.  It was so great to see her reaction to waking up and seeing us first thing.  She saw me first and then looked around looking for Tom.  He was supposed to leave last night, but extended his stay since she had not woken up yet.  Definitely worth him sticking around for that! 

She is really, truly doing great.  Way better than what I expected.  Which is how I would prefer it go down anyway! 

Here's what's going on:
  • She's being weaned off most of the drugs and being switched over to pain meds through her g-tube.  And they are starting her home regimen of meds.
  • They started her on slow, continuous feeds last night.  They are upping the rate per hour every six hours to get her used to having food in her belly again. 
  • They took out her foley catheter (pee tube) this morning.
  • Her white blood cells were higher on her last blood culture, so they took some trach, blood and urine cultures to see if any of those are the source.  And they put her on vancomycin just to be on the safe side.  All those tubes can be sources of infection, so they will start to pull them as soon as they can (which is why they pulled the foley). 
  • She's on her normal trach collar (heated and humidified air only) with lots of oxygen - but no breathing support.  So, she's completely breathing on her own and appears to be doing well.
  • She is coughing up blood, but that's not surprising.  She is requiring a lot of suctioning, but that doesn't surprise me at all.  She hasn't really coughed in a few days, so she's got some junk to get out after laying down and not moving around for a few days.
  • They turned off the external pacer again.  They are trying her off of it to see what she does.  She is in junctional rythm (which means the communication between her atrium and ventricle doesn't always work right). It can be intermittent or it can stay that way.  They said that one can live in that kind of rythm for a long time.  So, I guess it's not that big of a deal.
  • I spoke with her heart cath doc today and he said that she will need another cath in a year or so to look at closing the fenestration.  Again, I'll go into more detail about that later. 
Overall she looks really good.  She is less swollen than yesterday, which surprised me.  Her drainage amounts are within a normal range.  She has not signed yet and doesn't appear to want to communicate in any way (including her device, which she shewed away rather aggressively, I might add).  We asked her if she wanted to watch a movie, to which she completely ignored us, in typical Harlie recouperating fashion.  We started the movie anyway and she seemed to be enjoying it.  We then told her we were going to lunch and she wouldn't look at us.  Ahh, can you feel the love?  I'm thinking she'll be mad at me the rest of her stay.  She will probably begin to forgive us when we put on her shoes and we leave.  Until then, it's "abuse my wonderful, selfless, mother who has dedicated the past 3.5 years to helping me be the best I can be" time. 

It's so great to be me. 

In all seriousness, I really can't believe how well things are going.  I was way more scared than I let on (well, maybe not).  I much prefer getting beat up by her than worrying about her surviving another brutal surgery. 

The Plan:
  1. To keep her on trach collar for as long as she can handle it.
  2. To wean her completely from Dopamine and get her back on her normal meds.
  3. To keep her off the external pacers (that keeps her in the ICU). 
If all that happens okay and lasts through the night, I think they will send her to the floor (heart and kidney unit) tomorrow.  And for the first time ever, I'm actually okay with that.  The HKU definitely has it's benefits (assuming we get a private room). 
She will keep the chest tubes in until they deterimine its safe to pull them.  And once that happens, she can go home.  But, we're not even talking about that yet, of course.

Okay, you are all updated for now.
Thank you for all your support!


Rene said...

Everything sounds like it's going beautifully. I've heard the Fontan is the worst for kids because it's the age they become aware what's happening to them surgery-wise. But I guess Miss Harlie is wise beyond her years by now. Praying she stays stable and you're on the floor very soon. (((HUGS!!)))

Christy said...

glad to hear everything is going better than expected!
love, Christy

Anonymous said...

Glad to hear some good news. We are thinking about you all!! Mike and Marcy

ANewKindOfPerfect said...

What a great update! I am thrilled that she is doing so well. I hope she continues to zip along in her recovery. :)

Heather said...

wow! huge news and the best kind! well, almost the best kind. . we are on our way home would be the best kind! but I'll take it! she really is amazing.

Josie said...

Yay Harlie!!! What a trooper : ) Hope the next few days hold as much progress!!

Susan said...

That's fantastic! I knew she was strong and resilient but I'm amazed at the speed that she's recovering. Honestly I was a little worried too. This surgery was a BIG deal. I can't wait until you get home and have a chance to really evaluate how it's going to effect her. It's very exciting. Hugs!

Christamae said...

Awesome news! What a warrior! (((hugs))) to you both.