Tag Archives: Acute Flaccid Myelitis

November 11, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

W E E K E N D U P D A T E

➡️ Dr. Merritt is busy down in the PICU so we have a new attending this weekend and remainder of the week (Dr. Goslings). She is working on weening us off the duo tube and methadone. We were going to come off methadone today, but I mentioned her heart rate has been running 130’s-140’s even when she is calm so Dr. Goslings decided not to ween her today. She thinks the high heart rate could be a result of narcotic withdrawal. As far as her tube goes, she is taking all of her medicines by mouth (which she hates because they taste terrible). Now we just have to get her to eat a little more. I suspect they will ween down her night feedings tomorrow and that may help her eat more during the day.

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November 8, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

✔️ NG tube out
✔️ IV out
✔️ PICC coming out today 
✔️ Moving out of PICU today
✔️ Snuggle with Daddy

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November 2, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

Words can’t describe how proud I am of my punkin’ today!

PT/OT came in to work with her and she rocked it! She sat up on the side of the bed for FIVE minutes. The longest she could do a few weeks ago was one minute without supporting her own head. Today she held her head up all on her own!!! This is a huge step for her.

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November 1, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

Looks like we are coming off the vent today!



Our warrior princess is doing great off the tube so far. Her mood has improved significantly and she is using her right arm a lot more now that she doesn’t have tubing in the way.

They have warned us that it is a possibility that her condition could deteriorate so the plan is just to chill out and have fun today.

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October 31, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

My sweet girl had a rough night. Today marks one month in the hospital, and I can tell you our girl is soooooo over it.

While the air on her belly has slowed down a bit, the pain in her spine has returned. She has been on a fentanyl drip for a while and they have been weening her off of it, so Dr. Merritt thinks the pain could be from the lower fentanyl.

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