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.

Thank you for the prayers, please keep them coming!

Nurse Kelsey found her a unicorn headband.

Orange Beach girl with rare illness taken off ventilator; dressed up for Halloween

After having a great day off the vent and on high flow oxygen, baby girl started to feel and sound a little junky in her chest. She has been able to cough up most of it, but there was some we couldn’t get. We didn’t want to wait until night shift to try to take care of it so the RT and Nurse Kelsey suggested we try putting Annadelle on her stomach and elevate the rear of the bed in order to help her move secretions upwards so she can cough them out easier.

Before putting her on her belly, we put her in my lap and did some CPT on her back. I don’t know how to properly express the feeling I had being able to hold my child after 31 days of not being able to do so. Sitting next to her at the bedside is nothing in comparison to actually holding her. Chris was able to do the same while sitting in a chair, and after everything settled down he said exactly what I was thinking, “It felt so good to hold my baby girl.”

For now Annadelle is sleeping soundly on her stomach. She told us she didn’t hurt anywhere when we put her on her belly which is a miracle in itself. She has been on fentanyl for 19 days so taking her off of it caused her quite a bit of nerve pain, even with the gabapentin. She has now been placed on methadone to ween her off the fentanyl, then she will be weened off the methadone.

Dr. Merritt says if all goes well, best case scenario means we could go home in as little as 10 days. Please join me in prayer that we don’t have any more setbacks and are able to go home and start aggressive PT!

Our baby girl had a good bath and is now all tucked in for bed.

We had an issue earlier with her O2 dropping pretty significantly. We listened to her and thought she sounded like her left lung was diminished, as we couldn’t hear any air flow. The RT came in and agreed, so we did some CPT and put her on her right side. She seems to be doing better but still sounds very junky.

When she was extubated, both the PA and Dr. Merritt told us she was coughing good, but I have yet to see her have a strong enough cough to expel the secretions she’s got stuck in there. I’m not a medical professional so I have to trust that they know what they are talking about. Our goal is just to keep her vitals good until she’s able to exercise her lungs enough to hopefully make them stronger and allow her to right off the infection. She’s also getting antibiotics for another 4 days and we are hoping that really helps.

I know I haven’t been as in-depth with my posts this week so I apologize for that. The truth is I am exhausted and ready to stop having so many complications. I have faith the answered prayers are coming and I know I just have to trust God and be patient. Chris was kind of freaking out when she was SATing in the 70’s but I wasn’t because I just know in my heart that God is going to heal my sweet girl. I have no doubt He has put us in this situation as a testament of His healing power and mercy. All I have to do is trust Him.

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