4th Birthday Photo Session

4th Birthday Photo Session

Saturday, December 1, 2018

Cautiously Optimistic

Recovery yesterday from surgery was as to be expected.  Uncomfortable, trying to master pain management, clingy, whiny, mopey, and overtired.  We sat on the couch together for the majority of the day.  Something I can't remember doing in far too long.  Just sitting and being.  Every time I got up, I had to justify where I was going.  If it was the bathroom, she wanted to come with so she could talk to me. Repeatedly, I had to tell her, 'no sweetie, I'll be right back.'  If I wasn't back soon enough, she'd call out to me.  She mainly wanted to sit right next to me, under the blanket.  And I was quite content with that.  In fact, I think I fell asleep several times while she tinkered through a ridiculous amount of videos on her two different iPads.  By the end of the evening, we both were tuckered and she fell fast asleep as soon as I crawled into bed with her.  She wanted to be close, she wanted to be with someone, she crashed hard.  In the middle of the night, she sat up straight in the bed and proclaimed, "I need water!"   This is not unusual, but it startled me.  I figured it was a good time to redose on the Tylenol, and then I laid there for awhile after wondering if that was a foolish mistake on what is surely an empty stomach.  Luckily, she did just fine.

A few things I'd forgotten about, since it'd been such a long time since we'd done a true surgery.  (I consider ear-tube placement a procedure, more-so than 'surgery!')  That would mean that prior to yesterday, Andi had seven surgeries and two procedures - since those last two (#8 and #9) were ear-tube placements.  In any case, when they took me back to recovery and she was still coming out of anesthesia, I forgot how spastic that can be.  She would have her eyes closed, and then suddenly, open them and sit straight up in the bed.  Her eyes would be open, but it's not like she was really there yet.  It was totally bizarre.  By the 4th or 5th time this happened, she saw me and I got a little wave before she laid back down and closed her eyes again.  She had an IV and all the leads attached to her for the monitor, and she would get all tangled in this mess of cords or wires. Another thing I forgot about was when I first saw her.  I leaned in and kissed her repeatedly.  That's when it hit me -- the smell!  The smell of blood was pungent and it took me back to the early recovery from open heart surgery.  The wave of memories flooded over me - instant transplant to those first few days of serious unknown.  One thing from then that still weirds me out was how cold she was. Her skin was very cold -- although they promised me, her body temperature, what she felt - was normal.  They explained, it had to do with the sedation medicine, but she was fine.  It was so weird though - it was like kissing the cheek of someone in the morgue cooler.  Creepy.  I've never shared the photos from that surgery, because it's one instance I don't want to share.  There were so many leads, wires, connections, pumps, monitors, and doo-hickey's -- it was the scariest and the most awe-inducing experience.

This is just a fraction of what we stared at those first four months of hospital living.  Especially when she was in heart failure, and we constantly watched her high heart rate, coupled with a low O2 reading.  

In any case, Andi had a great night's sleep.  She awoke and proclaimed she felt great.  We laid in bed together and just snuggled and talked.  I signed that it was raining outside.  I gave her the old 'over-the-ear' hearing aid (which we wore yesterday to keep the soft band from hitting her stitches, and we tested to see if she could hear the rain.  She sat up and said she could hear it.  I cringed knowing she could hear more with the Ponto, but I just don't want to push it yet with the stitches.

This morning, she has proclaimed she does not want to take any Tylenol or Ibuprofen.  We put the antibiotic ointment on her stitches.  I took a picture of one side, and then realized after I took it - that I didn't get the full incision ... so I took a picture of the other side.  These are dissolvable stitches.  We are to wait until Monday to wash her hair - so first thing Monday morning, we'll be taking an extra long, extra soapy bath and cleaning this rat's nest of hair.  In the meantime, we're laying low and relaxing.

Lastly, the ENT was able to place two screws on each side.  One of those on each side are what they refer to as a "sleeper" -- it's just inserted into the bone at the same time, so that if 5 years down the road, she hits her head and dislodges the post, they can simply go use the sleeper and not have to go through the whole six month waiting for the bone to grow around the screw.   Smart.  Different parts of the bone were soft, (she said this is due to age, not because she has CHARGE), but she was able to get them all in and she noted which ones would be the best to use.  For Andi, her BAHA's won't be totally symmetrical on her head, because one post will be higher than the other - based on the stronger of the two screw placement.  Luckily, with her long hair - it probably won't even matter.  Even yesterday, when she was whining about her own discomfort - we talked about why we did all this and even she agreed, she wants the best possible opportunity to hear as well as she can.  So, we're on the other side of step 1 in this two-stage process.  To quote something we heard early on in the dark days of unknown, we were then and are again today, cautiously optimistic.

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