Thursday, September 11th – A big day…a new look

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Got some more cleaning done this am before coming into the hospital around 10:00am.  Riley had another good night, only having one desat requiring moderate stimulation, which happened during a feeding.  Per the night nurse, Riley’s nasal cannula spent more time in her mouth than her nose, and she didn’t seem to have any issues.

During morning rounds, we discussed taking Riley completely off O2 again, and seeing how she does.  I continued to explain that I didn’t feel Riley’s desats during feedings are related to an oxygen issue, but rather it’s either an episode of her forgetting to breathe or choking.  The med team said “Let’s try it,” and if she needs O2 during feedings, then we can give it to her as needed.  Perfect!  I also asked about when the MRI was going to be completed, and they said “Let’s do it tomorrow, because we’re getting close to discharge.”  There’s that “d” word again…the good “d” word.  Riley may have some b’s and d’s after the MRI depending on how she reacts to it, but the med team explained they “won’t hold that against her, as we’re the ones causing those b’s and d’s.”  Sounds good to me.  Finally, the plan is to increase bottle feeds to 100% over the weekend as Riley tolerates and then hopefully discharge next week!!  YAYYYY!!  But remember, lets not get our hopes up.  One day at a time…anything can change at any moment…

Except for the many Riley expressions…

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“Ninja” Riley
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“Sleepy” Riley
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“Not to be trusted” Riley
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“I don’t know what I did wrong” Riley
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“Up to no good” Riley

So immediately after rounds the nurse came in and removed Riley’s nasal cannula, leaving it within reach just in case.  It was also time for me to give her her first bottle feeding of the day…without oxygen.  I wasn’t too concerned about it, because again, I personally don’t feel Riley’s issues during feedings are related to whether or not she is receiving enough O2… then again, I’m not a doctor.  Well, Riley rocked her feeding.  She just needed a little pacing, but didn’t have any d’s or choking.  Another celebration took place!  So proud of you Riley Mae…keep up the good work!!

Turns out Riley did need a little oxygen during her 2nd feeding (again, what do I know), as she tended to dip down into the 60s and 70s, although I hardly noticed because I was so busy watching her for color changes and helping to pace her, that she’d dip down and come back up so quickly…too quick for any dings or alarms to go off.  Riley was a little more tired during this feeding session as well, and I certainly am all about giving her a little extra help if she needs it and don’t want to do anything to cause her to have a bigger setback.  Maybe this is how it’s going to work for Riley…she might need a little bit of oxygen during her feedings for a little while so she doesn’t get too pooped out.  I’m okay with this…whatever we gotta do.

Ian and I attended a memorial service that was held at the hospital for one of the well-known doctors at Magee, as it was our neighbors father.  When we came back to Riley’s room, Ian could barely wait to get in the room and see Riley’s face without the nasal cannula, as pictures just don’t do it justice.  Then I noticed something else was different.  Wait…it can’t be…her nasogastric tube was pulled!!  No more orange mustache!! No tubes or wires on her face AT ALL…just the little stickies on the side of her face remained in place just case they needed to give her O2 again.  A new look for Riley Mae…her face without any medical contamination.   Amazing.

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Talked to Riley’s nurse afterwards to find out the reasoning behind all this excitement we walked into.  Turns out Riley had tons of boogies around the nasogastric tube, as well as in her other nostril (which she suctioned out), so the nurse thought it would be nice to let her be free for awhile.  She also said that Riley did awesome during her 4:30pm feeding, not requiring any oxygen, and that she might try to do all bottle feedings with her as long as she’s up for it without pushing her too much, with approval from the  medical team.  Sounds like a great plan:)  A plan that’s getting us closer to discharge…so close, Riley Mae.  Beginning to see the light at the end of this long ass tunnel…

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