hyperbilirubinemia – Page 3

13 Days Old: Evening Update

May 6, 2016 No Comments

Update from the day.

Feeding paused after a mid-day check showed she was not digesting the volume being given. They refed her residuals so it will remain in her stomach, and they’ll check again at 8:00 PM to see if she has digested more. If she digests what was fed back, they’ll restart feeds accordingly.
Neuro informed us they are waiting on a pediatric neuromuscular specialist to assess Olivia, since she is a non-standard case. The specialist returns on Wednesday. We are holding until then.
The GI team updated their testing plan to include a HIDA scan. This is an assessment of the flow and functioning of her liver. This testing uses radioactive traces that act like bilirubin to map the flow of digestion. Since it’s a complex test and requires transporting Olivia multiple times, the core team may recommend holding this until after neuro weighs in.
Respiratory remained the same.
Olivia had some holding time with momma. She otherwise was asleep most of the day.

No other major progress or declines today. This weekend will likely continue to focus on feeding.

Finally, her NICU core team is switching under the care of attending. Dr. S’s rotation ends tonight. The transition started today. Dr. P rotated off as well, replaced by fellow Dr. M, however, she is covering nights this coming week and will continue to monitor Olivia.

Update: the 8 PM review found she had processed 5 MLs of breastmilk (and returned only 3). They are restarting now, and adjusting for the difference. That’s good news!

Daily Rounds

13 Days Old: Morning Rounds

May 6, 2016 No Comments

Updates from the morning & rounds.

Olivia continued to progress with feeds: giving back a net 2 MLs in a check last night and nothing this morning. They will increase her to 2 MLs per hour. She also had a stool last night, which means she’s digesting. At her current age and weight the goal is to get her to 15 MLs an hour. Getting from 2 to 15 MLs an hour will take time but they’re continuing to closely to monitor her tolerance for feeds and will increase volume when appropriate.
Overnight her CO2 levels increased slightly and they adjusted her pressure support accordingly. They continue to look for opportunities to ween back on this. Her X-rays do look better but they need to wait for the next round of blood analysis before adjusting the ventilator.
Bilirubin increased slightly overnight. The rate of increase is lowering, which is positive, however we are hoping for a decrease in total amounts, especially direct bilirubin.
A bunch of tests came back normal so they continue to rule various conditions, helping us to focus our search for a diagnosis.

Some good and some bad updates today, but mom and dad are really excited for the feeding progress. We hope it continues.

Daily Rounds

11 Days Old: Morning Rounds

May 4, 2016 No Comments

Good morning. Updates from rounds.

She was stable over the evening.
The roving atelectasis continued, with her right lung showing partial collapse in an overnight X-rays. Shifting her position appears to help. They continue her two lung medications.
Her feeds (mom’s milk) are delayed to let her continue to show signs of progress. She is back on TPN and lipids and her total fluids are increasing tonight (good).
The renal issue appears stable and they will continue to monitor (good).
We await liver tests. Her direct bilirubin continues to rise. They are starting phenobarbital as a treatment.
Official results from the MRI showed that she had bleeding inside the skull from birth trauma (previously suspected only between skin and skull). This is recoverable and not causing any harm. She showed signs of a stroke during birth, which is also expected to be recoverable.

Daily Rounds

10 Days Old: Evening Update

May 3, 2016 No Comments

Updates for the day.

Preliminary MRI results didn’t show too much, which is good. There was minor injury related to the stress at birth, but this is not of major concern to anyone at this time.
She continues to show positive signs from OT and is starting to show active range of motion (mean she’s moving more on her own, in addition to having a broader range of motion).
She is back up on her fluids.
She’s breathing well and continues to improve on ventilator settings (reducing the rate it’s breathing for her – she’s down to 45).
Feeding may resume again tomorrow.
GI came by and they are kicking off some blood tests check for metabolic issues and to look into her liver and gallbladder performance WRT direct bilirubin.

Daily Rounds

8 Days Old: Morning Rounds

May 1, 2016 No Comments

Dr. S. is in today.
She’s trying out a new position this morning, lying on her stomach.
She had a very active night and early morning. Her left lung was looking collapsed from overnight X-rays. They started her on Albuterol, which should help open her lungs. They also started Dornase to help with the secretions, which were high yesterday. This morning X-rays showed improvements, but pulmonary is still the primary concern for today. The team also noticed yellow secretions from the lungs, which is a possible sign of infection. They ordered blood tests – complete blood count (CBC) – that let’s us look for signs of infection via white blood cells. Those came back negative. They also ordered a C Reactive Protein (CRP), which was high (8) but not enough for concern. Her oxygen saturation levels are low – due to all the mucus plugs – so she is up to 46% O2. They are going to move her breathing tube up a little. They may due a few more techniques to attempt to clear her lungs.
Feeding has stopped, as they want to treat pulmonary first.
TBD on the results from the liver ultrasound. Other tests of her liver were OK.
She is off the phototherapy. Her indirect bilirubin count has come down, however her direct levels continue to rise which is concerning.

Daily Rounds

7 Days Old: Daily Updates

April 30, 2016 No Comments

9:05AM

Good morning! Olivia slept well overnight and they moved her back into a flat position. They started phototherapy at 8 AM to treat her jaundice. Her bilirubin is at 18 and her light level is 17. This morning we await updates on her right lung (following an x-ray), the status of her UA line (max they can keep it in is tomorrow), and the start of feeding (projected for the today and may help bring down the bilirubin level).

10:01AM

Update from rounds.

First series of genetics test came back all normal. This rules out Turner’s Syndrome and a number of other major genetic disorders. We await the micro-array results, which will reveal more acute syndromes. That may take a few weeks.
The UA is slated to come out today. After it comes out, Mom will be able to hold her for the first time. Feeding starts today as well.
Test results show that her direct bilirubin is very high now as opposed to her indirect bilirubin. This indicates that it there could be an issue with her liver, which is more common in babies with possible birth disorders. They will do an ultrasound to assess the structure of her liver. They were examined at birth and deemed “normal” but we’ll revisit it now given the high levels. Phototherapy may stop today, since it’s used to treat rises in indirect bilirubin (not direct).
Her right lung continues to be problematic. Morning X-rays showed improvements, however light pressure on that side caused stress for her this morning.

1:16PM

Pictures coming soon but mom got to hold her for an hour today skin to skin! It took her a minute to get settled but she did great. Dad fed her some of mom’s milk (via a tube) during the process. They both took a little snooze. Olivia was comfortable and peaceful throughout the process. It was awesome.

7:12PM

Update from the day. The highlight was about an hour of skin-to-skin time with mom. Mom and baby had a blast. She was fed 6 MLs of breastmilk but was only able to digest 3. They attempted another 6, but it was unsuccessful. They removed 9 MLs from her stomach and will try feeding again at 9:30 PM. If that doesn’t go well they will continue to decrease the amount given. Her UA is out, so one less line. Ultrasound on her liver happened around 4 PM, we await results.

Daily Rounds

6 Days Old: Daily Updates

April 29, 2016 No Comments

8:50AM

Good morning. No major morning updates. They gave her a diuretic yesterday to help with all the extra fluids she got from the transfusion – it worked and she came down 180 grams. Bilirubin is high, which is expected given the birth trauma, and she may undergo UV treatment tomorrow. Otherwise, all looks well. She looked liked she had a good night’s sleep.

10:18 AM

Morning update! She’s going to try coming off the ventilator today. This should happen this morning. Feeding from mom could start this evening if it goes well. MRI will be Sunday at the earliest, as they want to see how her respiratory changes go first. Her arterial line may come out tonight, also depending on respiratory progress. We continue to monitor bilirubin levels, but there is no treatment planned yet (intentionally). Dr. S and P will be in this Saturday to check on her. Everything else looks good.

2:09PM

An update: removing the respirator was unsuccessful and Olivia is back on the ventilator. They tried a few different methods, but ultimately she was exerting too much energy to maintain the necessary lung expansion. The good thing is she knew to breathe. She was off for about an hour total. We heard the faintest hint of her voice in the process. She is now sedated and sleeping. They will try again next week (date TBD). In lieu of today’s respiratory “failure” the team will focus on feeding as her next goal. Olivia got a visit today from Troy Lichten, who stopped by to say hi on his birthday.

8:23PM

Good evening. No major updates to report tonight. She awoke from sedation and was alert for a little before going back to sleep. She did make an effort to pee on mom. X-rays still showed her right lung as partially collapsed (something noted before). She is propped on her left to alleviate pressure on the right lung tonight. OT didn’t happen today due to the difficulties she had with the respirator. Feeding is on the docket for tomorrow, along with a visit from the Guerrero clan.

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