Ruby Hope McKee Starling

( UPDATE: After writing this post Sunday night, Holly pointed out this morning that they actually did move her morphine back to a 6 hour interval, not 4 hours like I originally wrote.  That was just a temporary step.  So really, everything was a step forward this weekend.  It was just a very hard-fought step forward.   I also failed to mention that Holly spent the night with Ruby last night so she could be there to hold her when she cried.  I wrote this late last night on the couch and I fell asleep halfway through.  So that's my excuse! )

Yesterday we weaned Ruby's morphine to 0.2ml every 6 hours, down from every 3 hours.  This is similar to the most recent Versed wean.  However, Ruby wasn't quite as accepting of this wean as the other.  When we went home at 11pm last night, she was sound asleep.  But when we came into her room this morning, there were 4 or 5 pacifiers strewn about the floor, and the IV for her antibiotics that had previously been in her left foot for her was gone and a new one was in her left hand.  Immediately, we knew Ruby had been misbehaving.  Apparently, she woke up at midnight and was inconsolable until about 4am when they gave her extra morphine and Versed to calm her down.  This morning at rounds, it was decided to keep her Versed at every 6 hours, but split the difference on the morphine and administer it every 4 hours instead of 3 or 6.

She continued to have withdrawal symptoms throughout the day today, including sinus congestion, crankiness, and vomiting.  We went through about 4 different outfits because she kept spitting up on them.  Unfortunately, I didn't have the camera ready.  The vomiting wasn't great quantities, only frequent, and so she got plenty of calories today and managed not to spit up any of her medications.  Her PO volumes are down a little, but she's still very eager to take the bottle or breastfeed.

Meanwhile, she has made big progress with her respiration support.  As of yesterday, she has been on 21% oxygen -- "room air".  And today they lowered her airflow from 2 liters per minute to 1 liter per minute.  So basically the nasal cannula is just blowing a little extra air in her nostrils.  We didn't really put 2 and 2 together until later this afternoon, but these changes are in preparation for sending her home -- to see if she needs to go home with oxygen.  We don't know how soon she could go home, but it feels like it is getting closer and closer.  We think it will be 2-4 more weeks, but it largely depends on Ruby and how soon she's able to get rid of the Morphine and Versed.  But even through all of the withdrawal today, her oxygen saturation remained 100%.  This is huge, because the medications she's having so much trouble weaning from are a large part of why she's still here with us today.  The morphine and Versed weren't just for pain management, but to keep her calm and sedated in order to keep her pulmonary hypertension in check.  It was to help keep that SpO2 at 100%.  So the fact that the amount of oxygen in her blood remains normal even as we are removing all the support mechanisms really gives us confidence that she is truly cured. 

This is Ruby at a happier moment yesterday, sitting in Mom's lap, seeing what a finger tastes like or perhaps seeing what the inside of her mouth feels like.  Her hand is glowing red because the pulse-oximeter is on it.  This is what measures the oxygen in her blood, telling us that she's doing great.