November 5, 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. 

The past two days have been relatively uneventful; we are so thankful.

Annadelle hasn’t sounded “junky” and her breathing has improved. Her O2 has stayed at 97 or above throughout the days and nights. She has slept well, as have we which is a blessing in itself. Good sleep is allowing her body to heal.

She has been taken off fentanyl for pain and it has been replaced with methadone. We were told patients are typically only in a fentanyl drip for less than 5 days and if they are on it longer than that they are placed on a methadone regimen in order to ween them off, otherwise they have withdrawals. Annadelle was on a fentanyl drip for 19 days and we have definitely seen some withdrawal signs, but they are getting better. She should only be on methadone for less than a week now if all goes well.

She has also been taken off presidex which was being used to calm her. Her anxiety is much better than it was, especially when a doctor or nurse walks in.

As you can tell from the video, she has been eating a lot of mashed potatoes. Nurse Danielle made a special request for us to have plenty of mashed potatoes since that is the only thing Annadelle would eat. It’s funny because she never ate mashed potatoes at home. I have a feeling she will never want a mashed potato again when we leave the hospital.

The only issues to note are an elevated heart rate and swelling of her left foot yesterday. Annadelle sat up in a chair for 2 1/2 hours yesterday and that is when we noticed her foot was swollen. We put her back in the bed and elevated it and it got much better. The doctors think it is just because her muscles are not being used much in that leg or in that foot at all and she is much more likely to develop edema on that side of her body. Cassie believes her elevated heart rate is a result of the weening or discontinuance of the presidex and methadone. She thinks that will resolve in a few days which is what I am praying for.

Also, a medical mystery right now is why her temperature goes from a normal temp to slightly elevated then back down in only a few minutes time. Chris and I believe it is a result of the TM but our doctors can’t really explain why it fluctuates as it does. From what I have read and heard from others who have TM, sensitivity to heat and cold is to be expected for years to come.

Although our sweet girl is doing so well today, I ask that prayers for her continue. I am trying not to get my hopes up and think we are on our way out of the PICU but I know God has his hand on our girl. I believe she will be just fine, but we still need prayers.

Thank you for all of the support and I will continue to update on her progress. 💜💜💜

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