Angelina's Journey
Granulomas are no fun
Months later
Maintaining
And now we work
Not Great News
G-tube feeding and seeing the lip
Surgery day
GI study
GI study
Snag in the plan
We have a plan
Slightly mistaken
Holding pattern
Tough few days
Tough few days
Tough few days
Hanging out
Sleep study
Well
A plan. We have a plan
Still
Maybe next year
Another day, another .... Nap?
Angelina's Journey
Granulomas are no fun
Months later
Maintaining
And now we work
Not Great News
G-tube feeding and seeing the lip
Surgery day
GI study
GI study
Snag in the plan
We have a plan
Slightly mistaken
Holding pattern
Tough few days
Tough few days
Tough few days
Hanging out
Sleep study
Well
A plan. We have a plan
Still
Maybe next year
Another day, another .... Nap?
Overview

Journal Entries

Admitted again

September 02nd, 2019

Angelina decided to close out August with a bang. Ever since returning to rehab after her last hospitalization, she has...

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Follow up

August 14th, 2019

Today, they scoped Angelina again. They tried to downsize her trach tube to see if it was just "too big."...

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Granulomas are no fun

Granulomas are no fun

August 13th, 2019

Before Angelina left the NICU, she had a granuloma in her trachea, below the level of her trach. They treated...

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Months later

Months later

August 04th, 2019

Angelina has been moved to the rehab hospital. She's been there for 2.5 weeks now. Her move got delayed a...

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Going forward

April 12th, 2019

Angelina has finally reached the required 5 kilograms for the home-going vent. They are going to wait until next week...

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Maintaining

Maintaining

March 25th, 2019

My sweet girl has been overall improving. She has mostly good days anymore. And when her bad times come, she...

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And now we work

And now we work

March 03rd, 2019

Angelina is doing very well with the trach. She's being kept comfortable with meds while she recovers from surgery. Her...

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Not Great News

Not Great News

February 20th, 2019

Angelina had to be intubated again today. She continues having the episodes of decreased O2 sats, and continuing to bring...

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G-tube feeding and seeing the lip

G-tube feeding and seeing the lip

February 16th, 2019

Angelina is 16 weeks old now. Man, the time flies and drags at the same time. They started using her...

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Surgery day

Surgery day

February 13th, 2019

Today was surgery day. Angelina had airway assessment, lip adhesion, and g-tube placement. All the procedures went well. Post-op she...

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GI study

GI study

February 11th, 2019

Today they took Angelina down for a contrast GI study. Turns out she does not have an actual reflux problem....

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Snag in the plan

Snag in the plan

February 07th, 2019

Angelina has had a few episodes of having to work a little harder on breathing. They think that she is...

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We have a plan

We have a plan

January 30th, 2019

Angelina will be having a lip adhesion and g-tube placement on Feb 13. This adhesion is not considered a repair,...

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Slightly mistaken

Slightly mistaken

January 29th, 2019

I was a bit off about the duration of Angelina's. They'll be done tomorrow, so hopefully they'll be able to...

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Holding pattern

Holding pattern

January 28th, 2019

We are at a standstill now. Angelina needs to have a swallow study to determine how severe her aspirating is,...

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Tough few days

Tough few days

January 27th, 2019

This weekend has been pretty rough on my girl. Friday morning she had a reflux episode that caused her to...

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Hanging out

Hanging out

January 21st, 2019

Today they bumped her oxygen down to 2 liters. So we can work on weaning that and hopefully get her...

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Sleep study

Sleep study

January 15th, 2019

So Saturday night after removal from the vent, her right lung collapsed... Again. By sunday  morning, it was back to...

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Well

Well

January 12th, 2019

so it wasn't Thursday like we were planning, but she has been extubated as of today. She's been pretty comfortable...

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A plan. We have a plan

A plan. We have a plan

January 08th, 2019

They have increased angelina's feeds to 60 ml, which is the highest it's ever been! They are starting steroids in...

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Still

Still

January 05th, 2019

Still just waiting to get extubated. Blood gas today had high co2 again, so up on her rate. Pressure settings...

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Waiting

January 02nd, 2019

Not much has changed. She's still intubated, but hopefully they're going to be working on weaning that in the next...

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Maybe next year

Maybe next year

December 31st, 2018

They did not extubate, because her pressure settings are still too high. Why, if they knew they were wanting to...

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Another day, another .... Nap?

Another day, another .... Nap?

December 30th, 2018

when I got to the hospital today, she woke up and reached out for me. I took her hand...

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Biding our time

Biding our time

December 28th, 2018

Plastics is going to keep distracting until she's extubated. As long as she continues doing well with the settings and...

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Another good day

Another good day

December 27th, 2018

A bunch of buddies went to visit Angelina today. She rolled her eyes at them, not impressed. She had another  chest...

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2 months

2 months

December 26th, 2018

The little princess is two months old today. It seems as though they are getting close to being done distracting her...

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Merry Christmas

Merry Christmas

December 25th, 2018

She's had a good day today, just hanging out. Some minor adjustments on the ventilator, nothing major. And they restarted...

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A Christmas setback

December 24th, 2018

They extubated , but it only lasted about an hour. She started wheezing and having a tough time, probably due...

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Christmas Eve post op

Christmas Eve post op

December 24th, 2018

They got the central line in with no problems. So now IV access is covered and we'll be able to...

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2 good days

2 good days

December 23rd, 2018

  Yesterday and  today have been very good days for my girl. She had some fever and heart rate elevation,...

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Dec. 22

Dec. 22

December 22nd, 2018

This will be kind of a catch up since I have been very much a slacker. Before the operation, Angelina...

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Post op day 8

December 20th, 2018

Today is 8 days post op from the mandibular distraction. It is also the 8th day of turning the screws....

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