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.
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.
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.
Feeds went up to 16 MLs/hr overnight. She had a great residual this morning, 3 MLs at 8 AM. We were in the 20s & 30s yesterday. She will increase to 17 MLs/hr today and go to 18 tonight. Olivia has lost weight in the switch from ND, so the supplements of pregestimil remain.
Direct Bilirubin is back up to 9.7 from 8.6 on Tuesday. No immediate concern, as the reading fits within the (slope of her) trend line.
Respiratory will remain the same today. Her blood gas was higher overnight and she’s had several desat events. This area started acting up towards the end of the day yesterday, despite a strong day on Tuesday.
Dr. C & team stopped by today to round. They were impressed with her OT performance. They expect results from genetics tests in mid-June.
Below are some photos from Mom’s morning holding session. We brought in a boppy today.
Good morning and happy 1-month, Olivia Grace! Mom will share photos from the celebration in a post later today. Olivia ordered up a cake for the royal occasion. She requested to be in the care of one of her favorite nurses today as well.
Tuesday’s medical updates:
Direct bilirubin number is down to 8.6. It’s great to see the continuous decline.
Feeds are at full force of 18 MLs/hr. Her PICC line scheduled to be removed today at around noon. This means no more IVs.
Breathing rate will be pushed down to 15 breaths/min, as they continue to ween her rates.
Hematocrit is up and red blood cells are close to normal ranges. Her Retic was up to 9.4%, so her body responded well and recovered on its own.
In hospital news, we had a Nurture Smart Mobile added to her crib yesterday. This should help with stimulation during her increased awake hours.
Mom got an early morning hold in, kicking off today’s festivities.
Good morning. Olivia had a great night. She was dressed overnight by her nursing friend, Danielle, in a hospital onesie. While cute as could be, Mom has other plans for her attire.
Dad came in early for another father-daughter session. Olivia bemoaned the idea of weekend schoolwork, so we put the books aside and she slept peacefully in my arms. She has been fantastic these past three days with movement in and out of her bed. Previously such an action would have sent her off in a downward spiral of desat events and the like, leaving her exhausted and frustrated from the attempt. It’s a treat to get so much holding time with her.
Medically, the following updates came in today:
Bilirubin is down to 9.7 from 10.0. She’s single digit now, and Dad is proud.
Respiratory stays the same today. Her progress is great and they’re going to let her rest without making more tweaks.
Feeds are up to 11 ML/hr and growing 1 ML q. 8. She’s still projected to be at her goal of 15 by Sunday.
Arbiters from both sides met again this morning on Hotel Olivia construction topics. An accord was reached to monitor her temperature changes today whilst fully clothed. If all goes well, the crib should be in tomorrow. Olivia had no comment to the resolution.
The Prior clan will drop in again today to play with Olivia. Here’s a picture from their arrival yesterday.
Yesterday a friend of Dad from Oak Hill delivered 2 cases of Olivia monogrammed golf balls. Check ’em out!
Finally, on the administrative side, a few fans reported issues with signing up for email notifications. Dad’s has found and fixed the sign-up page, so it’s working now. If you’ve subscribed and are not getting notifications, please subscribe again or leave a comment here (or text me) and I’ll add you manually.
Direct bilirubin values came down a smidge since Tuesday and are now at a flat 10.0. We’re hoping for single digits on Saturday’s read. Ursodiol starts today.
The low hematocrit noticed on Tuesday is up slightly to 27, which is good. Retic rate is still high at 4.9, so her marrow is producing red blood cells to counteract.
Feeds bumped up overnight to 6 MLs/hr and 7 at noon. Olivia is now on “protocol,” and her feeds will increase 1 ML every 12 hours until she’s at 15 MLs/hr. She should reach that level by Sunday.
Her vent settings are going down again to 20/bpm, as they continue to ready her to come off. If all goes well, they will make an attempt again on Monday or Tuesday.
In other news, Hotel Olivia is slated for crib upgrades. Guest feedback indicated a lack of stimulation on the grounds. Given the average age of occupants has increased to almost one month, management, at the recommendation of OT, decided to make some investments in this area. Constructed is expected to start this week.
Olivia was excited to learn that Grampa Prior and Nana will be coming to visit her tomorrow. She asked if she could go diaper shopping for the occasion. Unfortunately, nursing said, “no, not yet”. Olivia grimaced, soiled a fresh set of pampers, and promptly went back to dreaming about elephants.
Otherwise, Mom will do some errands today and get out of the hospital. Daddy-daughter time includes a few poolside books and some warm milk.