Whitney Guerrero – Page 5

21 Days Old: Evening Update

May 14, 2016 2 Comments

Olivia had a great Saturday.

She had visits from her Guerrero grandparents, Aunt Lauren and Uncle Chris. She did wonderfully after adjusting to her lower ventilator settings. And the highlight of the day came in the afternoon when she spent a couple of hours in the arms of mom and dad. Today we held her bundled up instead of skin to skin, which let us get much more face time!

Feeds continued at 2MLs an hour (despite ongoing residuals), we had one stool (with the help of a suppository), and today was the first day of receiving only one dose of Dornase.

Daily Rounds

20 Days Old: Field Trip Time

May 13, 2016 No Comments

This morning I was able to tag along when Olivia went on a little field trip to the ground floor. My first chaperone experience! This was for the 2nd part of her HIDA scan. The transport required 4 staff, new pieces of mobile equipment, and a whole lot of preparation and caution. I now understand why they prefer to hold off on any tests requiring transport until babies are relatively stable.

Olivia spent about 20 minutes total under the camera. She was swaddled in blankets to keep her warm, and wore a hat for the first time. We now await results.

Daily Rounds

20 Days Old: Morning Rounds

May 13, 2016 No Comments

Rise and shine, from wide eyed Olivia.

This morning Luke arrived early at the hospital, to find a wide awake little girl. Mary Ellen (our nurse) had just given Olivia her first bed bath! The little one was pretty sweaty and stinky from 3 weeks of life, and her hair was greasier than grease due to all the baby oil we’ve slathered over her in attempts to get rid of glue and residue from equipment. Following the bed bath, Luke was able to hold her briefly while Mary Ellen changed her sheets: check out the gray elephants!

From rounds:

She continued to have residuals (5MLs, 8MLs, 2MLs, 5MLs) overnight and this morning, but feeding will continue. Today we’ll increase to 2MLs an hour today.
She’ll travel downstairs for part 2 of the HIDA this morning, and we hope to get initial results today. We’ll likely discontinue Phenobarbitol after the scan is complete.
Her respiratory rate is staying at 40, but we dropped her volume to 19. So she is now 19 over 6 with pressure support of 10.

Daily Rounds

19 Days Old: Evening Update

May 12, 2016 No Comments

Busy day in room 15.

After morning rounds, Olivia had a visit from mom’s girlfriend Heather. She brought along some special treats, include a snazzy pair of sandals for Olivia to wear one day. Heather helped Olivia gaze at a new book, and kept her engaged in some overdue girl talk.

Around 1:30PM our nurse packed up Olivia’s things and took her downstairs for the HIDA scan. She did great during transport, had no respiratory issues, and came back to her room a couple of hours later. She’ll need to go back downstairs for part 2 of this test tomorrow, and then results will be at least a few days out.

While Olivia was downstairs, the palliative care team stopped by to talk to mom. This team (consisting of an MD and NP) will be a part of Olivia’s primary team moving forward, and this was just an introductory talk.

After the HIDA scan, we had the long awaited visit from Dr. C who recently returned from a trip to China. The assessment was thorough. Olivia cooperated and woke up for the latter part of the assessment, so Dr. C and her team were able to see Olivia awake and alert. Dr. C recommended a genetics test as the next step, which we think may be ordered fairly quickly (in the next day or two). Unfortunately, this is another test that takes a few weeks to run and analyze, so we are not expecting quick results.

Respiratory wise Olivia did great all day on the same settings described this morning. Her feeds continued after the HIDA scan at 1 ML per hour. And we had a poop at noon (with a little help from a suppository).

Daily Rounds

19 Days Old: Morning Rounds

May 12, 2016 No Comments

Updates from overnight and this morning’s rounds:

A good chest x-ray resulted in decreasing her respiratory rate to 40 (from 45), and since she’s had a couple of good days in a row they decreased one of her pressures 1. She is now at 20 over 6.
She continued to give back mixed residuals of some milk and some mucus. If the residuals are mostly mucus the team discards them, if its mostly milk, they’ll re-feed it to her. They are keeping total volume to 1ML per hour for now, but we will start Reglan today (a medicine to help increase motility).
Direct bilirubin came down just a tad overnight. It’s now at 12.2 from 12.8 yesterday. The team has recommended that we consider stopping Phenobarbitol completely. This is a decision they are currently leaving up to Luke and me as parents. The reason we would stop the medicine entirely is twofold:
- (1) It would allow us to see if her direct bilirubin continues to decrease over time, even without the medicine. If this were the case, it would point more towards Olivia’s liver suffering from the initial insult at birth, rather than an inherent inability to function as desired.
- (2) It may help us better understand Olivia’s “baseline” for alertness and activity. This is working under the assumption that the Phenobarbitol has had a sedative affect on her over the past week or so. The doctors are convinced this is the case given her low dosage, but it’s certainly a possibility and has been the observation of a number of nurses, OT, and us as parents.

Daily Rounds

18 Days Old: Evening Update

May 11, 2016 No Comments

Olivia had a very quiet day. We had a new nurse during the day who was wonderfully attentive and affectionate with our little girl. She even suggested a couple of new toys to keep Olivia entertained during her awake times. The “fish tank” plays a random assortment of songs, and kept Olivia absolutely fascinated for over 30 minutes.

A child life specialist stopped by as well this afternoon, and left behind a few more toys that we’ll introduce another day. Her goal is to ensure we’re keeping some semblance of “normalcy” around Olivia amidst all of the medicine. Her toys include a mirror to position above Olivia so she can check herself out, a tactile learning tool (a blanket made of different textures to put in Olivia’s hands), and some jingly toys (but not a full mobile) to put overhead.

On the medicinal front: respiratory rate went back up to 45, no changes to feeds or medicines. We did not see Dr. C as we had hoped, so we’ll wait and see if she visits tomorrow.

Daily Rounds

18 Days Old: Morning Update

May 11, 2016 No Comments

Prior to this morning’s rounds, we had two visits.

Dr. C’s (neuromuscular) team members came in to assess Olivia. This seems to be the normal process when working with any consulting specialist: a team of residents and/or med students will visit with a patient and complete a brief clinical assessment before the specialist comes in. Unfortunately Olivia was completely conked out while the team assessed her. Hopefully she’ll be more awake this afternoon when Dr. C arrives.

Dr. F (genetics) came by to check in on Olivia and speak to us. He is waiting for Dr. C to complete her initial assessment. The two of them will then consult with one another, and confirm next steps in terms of testing. He did share that he thinks the recommendation will be to move forward with a full gene sequencing. While this type of test doesn’t guarantee a diagnosis, he said it’s the best option we have at this point.

The plan for today, from morning rounds:

Direct bilirubin level is up slightly from yesterday; it is now 12. Regardless, we plan to keep the Phenobarbital dose at 3 as mentioned yesterday to see if she begins to look and act less sedated.

Feeds didn’t go well last night. High residuals continued throughout the night, so we’ve decreased the total volume of breastmilk to 1 ML per hour.

Respiratory remains at 22 over 7 with pressure support of 10. A good gas overnight (or early this morning) allowed them to turn rate down to 40. She is handling these numbers well, and has started occasionally breathing over the vent again, so we’ll leave her where she is today.

Daily Rounds

17 Days Old: Morning Rounds

May 10, 2016 No Comments

Updates on Olivia:

Luke and I stayed at the hospital pretty late last night, as Olivia continued to have desat events that worried us.

During a more severe event, the nurse and a respiratory tech thought it sounded like both of her lungs were “very tight” (collapsing), so they called in Dr. P who is now doing night shifts. She spent some time with Olivia, and found a new position that didn’t “cut off her trach” as much. In addition to a new position, they increased her pressure support to 7. Since the pressure support change last night, Olivia’s been doing well. Nervous mom gave the NICU a late night call to check in and was relieved to hear she had been doing well since we left, “sat-ing” near 100% and sleeping.

In this morning’s rounds an xray from 4AM showed that Olivia likes this new pressure. Both of her lungs looked open, one slightly less than the other, but still a great picture to see. Because she’s responding well to the new setting, the respiratory plan for today is to keep things where they are and give her some time.

Direct bilirubin is down to 11 from 14 yesterday. The continued decrease is good news, but we still have quite a ways to get down to the goal of 2. Despite the steady decrease, the GI team would still like to move forward with the HIDA scan, however Olivia’s primary team is not ordering it just yet. The scan requires that she be transported multiple times in a single day, and given her fragile respiratory state the team does not want to risk having any events during transport.

Feedings will continue throughout the day. If she has less and less residuals at each change today, they will increase to 3MLs an hour. If she shows high residuals, they will consider a motility medicine. Still no stool, so she’ll be getting a suppository at the 24 hour mark since her last one.

In other news:

The meal train delivery last night was amazing. Delicious pasta dinner with a spicy bolognese sauce, cheese, and a loaf of bread. Plus loads of goodies. More coffee, creamer, fruit, breakfast drinks, muffins, candy, wine… and more. Thank you to the Fox ladies!

I was extra tired this morning so I slept in a bit and Luke headed into the hospital solo at our normal hour. Olivia was wide awake and waiting! Despite my best efforts to wash and comb her hair yesterday afternoon, it looks like she’s got quite a case of bedhead today…

Daily Rounds

16 Days Old: Evening Update

May 9, 2016 No Comments

Not a ton of updates from today.

Respiratory:

Olivia had a handful of quick desats today, similar to what we learned occurred last night. These moments are scary for mom and dad, but the nurses handle it well. On two occasions she required extra support from the green bag, but all other instances were handled with a brief increase in oxygen or a good suction.
Despite a tougher day, Olivia has been doing great since around 3PM. She had a great blood gas that resulted in her respiratory rate decreasing from 50 to 45, and she’s been resting comfortably on room air for a few hours.

Feeding:

Continuous feeds continued all day, despite small residuals and no poop since 9PM last night. The team has kept her at 2MLs per hour. We hope she tolerates the feeds well tonight, so they will increase her total volume of breastmilk tomorrow.

In other news:

Luke began transitioning back to work today. He worked from the hospital so that he was never too far away, and took calls from the lounges, lobbies, or library.
Our friends from around Pittsford started a “meal train” today. This is an incredibly kind gesture – a different family will be preparing and delivering a dinner for us each night of the week. One less thing on Luke’s and my mind, and a constant reminder that we are surrounded by wonderful family and friends. One small hiccup in today’s delivery: we forgot to turn off the house alarm, which resulted in a “burglary” status, a number of missed calls from ADT, and a visit from the local police department. Whoops!

Daily Rounds

16 Days Old: Morning Rounds

May 9, 2016 No Comments

Olivia had an okay night. She had a few “desat” episodes where her oxygen saturation levels briefly dropped into the 60s. In each case, she recovered quickly after an increase in oxygen. She also had some residuals from her feeding, but not enough to raise major concern, and feedings will continue as usual. And in good news: she pooped! The night nurse administered a suppository around 6PM yesterday, so that likely helped move things along. At this point, she’ll receive a suppository again if she does not stool on her own after 24 hours.

This morning we arrived to her numbers looking great, and her breathing room air. She looks cozy on her tummy, and has her favorite nurse looking after her for the day. Meg from OT will come by at either 12 noon or 4PM for range of motion exercises.

Other updates from morning rounds:

Her direct bilirubin came down. This is the 2nd day in a row we’ve seen slightly decreased numbers, which is great. This morning it was at 13 down from 14 yesterday. Doctors assume the decrease is a combination of her Phenobarbital and the introduction of breastmilk.
Her weight is up slightly to 5 lb 11 oz.
Feeds will remain the same today: 2 MLs every hour. If she continues to have residuals and trouble pooping on her own we may talk about additional medicines later this week.
Olivia’s primary team is going to consult with the GI team today to discuss whether we should order a HIDA scan this week.
Still planning for the pediatric neuromuscular specialist to visit and assess Olivia this week. We’re hoping that takes place Wednesday.

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