The day has come! Olivia’s direct bilirubin finallycrossed the <2 threshold. Today’s labs show her direct bilirubin at 1.9. Her total is still above 2.0, but seeing her direct down this low is fantastic news. Keep in mind at one point this was 17! I’m not sure if we’re safe to cross hyperbilirubinemia off her problem list just yet, but it sure feels like we’re close.
As a result of the steady decrease, the team is discontinuing two medicines: her Ursodiol and also her Actigall vitamin. We’re excited to get rid of the Actigall, as it regularly has given Olivia an upset stomach. In its place, she’ll receive vitamin A and D on a daily basis. Discontinuing the Ursodiol is a bit of a test. We’ll keep an eye on her direct bilirubin week over week (via her Tuesday labs), and if it begins to creep up again we’ll likely start the Ursodiol again.
In respiratory news: Olivia sprinted for 2 hours last night, and will continue more exercise today. She’s due for a 2 hour sprint this afternoon, and a second sprint this evening around 8PM. In addition to monitoring her CO2 via an end tidal during these sprints, we’re going to advocate for an x-ray at the end of each sprint to see if she shows any signs of atelectasis. Because she had her first lung collapse so earlier in her extubation trial last week (after just a couple of hours), we’re curious to see if she show signs of atelectasis during sprinting as well.
Nana and Grandpa Prior visited yesterday before heading back to Maine, and Luke and I spent the day and evening with Olivia, per our usual routine.
Most often now a days Luke will arrive first thing in the morning – usually before 8AM and spend the early hours one on one with Olivia. This gives me some quiet time to either sleep in (which I’m quite good at), putz around the house, or run errands. When I head in to the hospital mid morning, we’ll overlap for a few hours, have lunch, and hang out with Olivia together as a family before Luke takes his turn to get outside. Depending on whether it’s the week or weekend, he’ll either go into the office, head home to take care of things like lawn work and house projects, or get outside for a round to relax. It took us over a month before we decided to try this routine, and while we don’t take shifts every day, it’s brought a little bit of balance to our lives, and provides us each some alone time.
Today Olivia has both PT and OT sessions planned, and will likely restart a sprinting regiment this afternoon.
PT and OT continue to work on range of motion and strength, with new fun activities like sitting up! Pictures below show Olivia practicing this new position with mom and dad over the weekend. She doesn’t always “actively participate” – sometimes she likes to relax and let us do all of the work – but on occasion we can feel the smallest bit of engagement from her neck muscles. Steps in the right direction.
Sprinting was discussed this morning as a possibility for this afternoon, depending on today’s weight. The team wanted to wait for today’s weight to see if Olivia was up again from her last weight. Turns out she is up 30 grams from yesterday (now 3030 grams) so we suspect the sprinting will be cleared. While small, the incremental gains day over day are appropriate signs of growth, and hopefully enough to get her back on the growth chart. She was born very small, so we’d be happy to see her back around the 3-5% mark, but ultimately the team would like to see her catch up more and land around the 20-25% range.
Good morning. Olivia had a peaceful night. She completed a 3.5-hour sprint this morning.
Today, the pulmonary specialist team will [re]consult on Olivia’s case for ventilation extubation. We have a full week of positive sprinting data for them to consider, so Mom and Dad are optimistic. She has a known hurdle with her capabilities to manage secretions and protect her airway. Doing these tasks requires swallowing, coughing, and using muscle groups we can’t readily assess (due to ventilation). Given her overall muscular picture, these areas are likely weakened. We’ve observed some affirmative signs strength in OT. We don’t expect a decision from Pulmonary today – but would be delighted with one. They’ll stop by today around 3:30 PM.
Feeds. Her volume (20 MLs/HR) remains the same. She’s increasing to 2 teaspoons of pregestimil (from 1.5).
Respiratory. She’s going up to 4 hours today. This may change based on her pulmonary consult.
Labs. Results came in early, as they combined the blood draw slated for tomorrow. Direct bilirubin is down to 3.9. Other results were normal, including her blood gas.
Good morning. Olivia had a great night with one of her favorite nurses. She awoke early for a jog from 5:30 to 7:30 AM.
Bilirubin is down to 5.1. We’re loving the continuous slide here with 6.1 & 7.0 in the prior two readings. Her goal is sub-2.0. Based on Dad’s very fancy (10th grade) math skills, he’s projecting she’ll get there by June 16th.
The team continues to push her on respiratory. Her sprints are ordered to increase to 3 hours, 3x/day. She’ll start that this morning.
Feeds remain constant. Her weight is up another 50 grams.
Ms. Olivia will be entertaining guests today and asked to be dressed for the occasion. Mom helped her out with the selection. Charise and Lindsay (Maccie) arrive from Connecticut and Massachusetts, respectively, this morning. Olivia (and Mom) are very excited.
Good morning! Olivia slept soundly last night. She was exhausted from a multiple hour play session with Mom yesterday.
No lab updates for today. Sprinting continues on the respiratory front. We ran for 2 hours to start the day. Feeding remains the same. We’re not starting bolus-style feeding, as mentioned yesterday, instead focusing breathing and OT progress.
Olivia had a great night and a fun morning with Dad. While sprinting we jammed out to Yanni, then wrapped up with Rumpelstiltskin and The Little Engine That Could. I put her in pink flamingos for the festivities, check ’em out below.
Respiratory. Sprinting sessions are ordered to increase to 2 hours, based on stellar performance thus far. We hope to make some assessments on the ventilator next week.
Feeds. Holding steady here – 19 MLs/hr, +1.5 teaspoons of pregestimil, +6 MLs of liquid protein. Tomorrow we may trial bolus-style feeding. Right now she’s on a continuous feed where milk drips into her stomach at 19 MLs/hr. Bolus-style feeding simulates her feeding naturally, giving her 76 MLs (4-hours worth) all at once.
Billy. Direct Bilirubin continues its slide down to 6.1 from yesterday’s 7.0. This is fantabulous. Sub-2 is the goal.
Note, the hose is pulling on her face in this photo. That’s why her right eye looks a little funky.
Respiratory continues on the same trajectory – continuous workouts.
She’s now ordered for 3-4 sprints per day. This is up from 2 sessions/day.
She “ran” for an hour this morning in Dad’s arms. They had a transcutaneous CO2 monitor hooked up during the exercise to measure her CO2 levels (grey and purple gizmo attached to her tube in the image below). Rates consistently held in the 40s-50s, which is great for her.
Note: overnight she had a significant desat event, however, it was deemed to be related to the tube “tenting” against the wall of her lung due to movement. They’re going to adjust its position (depth) and re-tape her today.
Feeds remain consistent at 19 MLs/hr. She had a residual of 19 overnight, well under the limit. These are now checked every 12 hours.
Direct bilirubin measured at 7.0. Last measured on Thursday at 9.7, this is fantastic! Since the number has previously jumped around on us (8.6-9.7), they await Thursday’s reading to assess any measurement error (e.g., was today’s 7.0 or the 9.7 a false reading).
Other regularly scheduled labs came in as normal (hems, etc.).
After her morning sprints, Olivia requested to start the literary classics curriculum. Dad read her Cinderella, Jack and the Beanstalk, the Tortoise and the Hare, and a few others.
Good morning and happy Memorial Day. Olivia had a peaceful night.
Feeds are going up to 19 MLs/hr to add calories and keep her growing.
Respiratory rates and settings remain the same. She is scheduled for two sprints today, with one going on at the time of writing. So far, she’s doing well with these exercises. They are expected to continue throughout the week.