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.

➡️ Weekend PT came in and she was not very cooperative. I am hoping she will do better with Kelly or Megan and Kaelin tomorrow. They have been with her since the beginning and she does better with them. I had to bribe her with a Polly Pocket to get her to do it on Saturday. 😑

➡️ My Mom is helping us work towards getting ready to come home, as far as making sure there is enough room to accommodate a wheelchair and whatnot. We also ordered a foldable trundle bed so that she can sleep with us comfortably. ❗️❗️❗️I am currently looking for a pulse oximeter with an alarm for nighttime use. I have included a photo from Amazon of what I am looking for. I am hoping someone can sell me a used one for much less than the cost of it new (as it is outrageous!). If you know of someone who has a working one they are willing to sell, please let me know!❗️❗️❗️

➡️ After bath tonight, we worked with Annadelle to exercise her legs and arms. We do this several times a day when PT isn’t here. Tonight Annadelle was able to wiggle her left toes ever so slightly! This is a HUGE blessing beause it shows that movement is slowly starting to come back! She is also able to use her left hand to touch her left shoulder with help. Praise Jesus for answering prayers!

➡️ We will know more about our plans after tomorrow when regular staff returns to work, so I’ll update about that as soon as we know. As of right now, we are aiming to go home mid-week! Sqqquuueeeeee!!!!!!!

Thank you for all of your support. Please continue to pray for our baby girl!

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