Breathing easier

Brace yourselves, this is going to be a long one but I promise to include pictures to make it more fun. 😉

It's been a week, y'all!!!  

Tuesday/Wednesday this is how she looked...

Margaret had a rough couple of days this week as the IV meds were being weaned off.  At one point she hadn't slept more than a few 10-15 minute restless naps in a 24 time period.  It was awful.  Clearly the snails-paced weaning was not working and we had to switch to more of a glacial pace.  We also ended up adding a new oral medication as the IV med was decreased to help with lessening the discomfort that and it seems to be working well.  Yesterday and today have been so much better and Margaret looks and feels a lot more like herself.  She's still pretty unpredictable and we can tell that she's experiencing some discomfort but not nearly at the same level as she had been.  

loving the swing

On Wednesday the NP and Cardiologist let Margaret try hanging out without the oxygen support.  She was able to keep her sats within an acceptable range AND she made it through the night without needing it!  We were pretty pumped to see her sweet face without the nasal cannula.  Next up was the line in her foot.  Margaret hated having that one in and it randomly started not working so it was able to come out sooner than expected.  The only line left was the neck line and that one came out today!!!  🎉

Thursday Margaret was feeling much more peppy and we even got to get her dressed in her jammies.  She insisted on having a bow, too.  Such a girly girl.  😜  We were able to get her into a swing and a high chair and get some actual playing in as well.  Margaret was excited about the change in routine - things can get pretty boring around here...I even was able to get a little giggle out of her while playing in the high chair.  SO fun to start hearing her make noises and facial expressions that she had been making prior to surgery. 

dressed, playing & watching Moana

Today, Friday, was a good day.  Margaret is still a little more irritable than normal but that's to be expected when weaning off of the type of meds she's been on.  We stopped the continuous feeds and have started working on getting her back into her bolus feeds.  She's done okay so far and unfortunately still refluxing pretty bad.  We can handle reflux.  Often we are asked what her baseline is and it's refreshing to be able to say "yep, this is what she was doing before surgery" and then it doesn't become a concern for the team.  We just need her to be at baseline in order to bring her home.  

The age Margaret is at can be hard.  Why?  2 words: stranger danger.  Margaret is typically extremely social and LOVES people -- seriously, I have videos of her trying to reach out to and play with strangers at the grocery stores.  She LOVES people.  It's been a bummer seeing her go through stranger danger here, though, but it's totally understandable.  This place can be scary when you're too young to understand why you hurt and that the nurses and doctors are actually helping you.  When someone takes a bandage off your tummy and it doesn't feel good, wouldn't you scream when you saw them, too?  As a result, Margaret has become even more of a mommy's girl and the poor nurses struggle with keeping her calm when I'm not here.  Thankfully we shouldn't be here too much longer and we are hoping Margaret becomes a social little butterfly again soon.  

more playing

We also discovered that Margaret seems to be teething more and we think her bottom two teeth will pop through soon.  Go figure, her body chose now, right after open heart surgery, to put her through teething!!  

Overall she's had an extremely busy but productive week.  We are very optimistic that we will be able to go home soon.  

helping update the blog

mommy's girl