Road to Recovery

7.27.16:

Last night was NOT fun.  Ellie was coming out of anesthesia and as it wore off more and more, her pain was increasing rapidly.  She was writhing in pain.  I’d asked a nurse if we could get her something for pain – our nurse was attending to a code at the time, so things were a bit slow.  While we waited, Ellie would cry and suddenly stop.  Her apnea alarm on the monitor would go off, startling her back to crying again.  She’d stopped breathing for 22 seconds the first time, 20 the second time.  She continued the cycle of cry, stop breathing, cry again before we hit the call button and brought the attending, nurse, and resident in to help assess the situation.  We've dealt with sleep apnea before (related to her small airway), but never episodes of her forgetting to breathe when awake.

Of course in the midst of this, her O2 sats would drop (happens when you don’t breathe) and her heart rate would increase because she was so upset.  It was scary stuff.  We put her back on bipap so that if she stopped breathing again (which she did), it could take over and make sure she kept a decent respiratory rate.  At least this allowed her some rest. 

Thank goodness we hadn’t given her morphine yet or we might have really been in trouble.  For the next several hours, she continued the same pattern, but was no longer upset.  She would be breathing okay on her own for a minute or two, then stop and bipap would take over for 4-5 breaths before she'd kick back in again.

Through the night, Ellie was able to get some rest… Brandon and I were, too.  Dayton Children’s has the best parent sleeping arrangements (unless you’re in IMCU) of any hospital we’ve stayed in… hands down.  So that was a happy note on the night.

When I got up this morning, Ellie was awake and looking around.  She wasn’t upset and she didn’t seem to be in pain.  She can only have Tylenol and Ibuprofen for pain management.  I’m pretty sure I’d be throwing chairs at people if that was my pain management after what she’d gone through yesterday… but she’s much stronger than I am.  I got a little smile out of her and she liked that I was playing with her piggies.  Brandon is laying with her now playing with her animals.  She’s pretty darn happy about that, but a little violent as she kicks at him sometimes.  I think she’s mad that her arms are in immobilizers and she can’t suck her thumb or play with the toys we brought.  She’s also pretty mad at her IV pump when it alarms at her.  Fortunately, she’s no longer used to these background noises.

All in all, this morning is starting out much better than last night ended.  I’ll post again later today within this post to let you know how today has gone. 

Thank you, again, for all of your thoughts and prayers.  She sure keeps us on our toes.  Let’s pray for smooth sailing moving forward.

2:00pm update: Our little champ is really showing us what she’s made of today… in the best way!  She was awake this morning as I played peek-a-boo with her puppet and got some genuine smiles out of her.  She gave kisses.  With her arms still immobile, she reached her flexible little legs all over the place to play with her toys… kicking them all over her bed.  A therapy dog came in and she loved petting her ears with her piggies.

After mid-morning rounds, they decided to take Ellie off bipap and put her back on the cool mist machine.  She’s done great on that ever since.  So she’s breathing just as she should be.  Celebrations!

Speech therapy came in (the same therapist that worked with Ellie when she was a month old) and we were able to sit Ellie up in her bed and let her eat some food.  She was very ready to take some food by mouth and did great.  That’s my sweet girl!  Right now, she’s snoozing.  When she wakes up, she’s going to get a bath and some trach care.  Once she’s all cleaned up, I’m allowed to put her in her own clothes.  There’s something about babies in hospital gowns that’s just too sad.  Once she’s in her own clothes, I know she’ll instantly look like she feels so much better. 

Today is a great day.  

Sitting up enjoying some lunch.  She tried jello and string cheese for the 1st time today.

She liked yogurt the best (as always).