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.
I ended up falling asleep at Annadelle’s bedside last night while I was letting Chris sleep, but he later woke me up and had me get on the room bed so I could get some rest. I ended up sleeping for around 6 hours, so the updates I know from last night are from Chris.
He said she did very well last night. She woke up crying a few times, but he said he was able to get her calm down quickly and she would go back to sleep. He said he was able to get her to go to the bathroom, which is a very good sign. She has been going regularly when we ask her to.
They have taken her off of the morphine and are now giving her Tylenol and Ibuprofen for pain. We have also been using heating pads on her back and rubbing her and that seems to help.
She has been having some pain in her left leg and arm which are the arm and leg that she can’t use. The doctor said it could mean the nerves are showing signs of repair but it could also indicate further damage. We just have to wait and see.
They are talking about if they are going to take her off the mask today and put her back on the high flow nasal cánula. Chris said her numbers were good overnight but right now her oxygen is only at 97 with the mask, so I’m not sure what they will do.
We have had several people asking us about sending care packages or letters. It is fine to do that, but they do not allow flowers in the PICU. If you would like to do so, the address is:
USA Children’s and Women’s Hospital
PICU Unit, Room 14 Annadelle Faulkner
1700 Center Street
Mobile, AL 36604
Also, if you would like to send her a video message, please send it to me through Facebook Messenger. If you do that, she can watch it on her iPad.
I have also had a few people ask me about my PayPal email and it is firstname.lastname@example.org.
We have also been approved for a Ronald McDonald room about a 10 minute walk from the hospital. One of us will have to go check in today, but we are waiting until the doctors and respiratory therapists make their rounds.
Please continue to keep my baby girl in your prayers. We are nowhere near out of the woods. If you would like to add her to a prayer list, we do not mind if you add her name and situation so that we can be specific in our prayers. I know God will pull my baby girl through this.
Annadelle has done pretty well so far today. She has been alert and awake most of the day, at times showing signs of exhaustion by not talking much or at all.
The infectious disease doctor came in this morning. She was moving her shoulders a lot and he thought that was a good sign because she wasn’t doing that much yesterday. He said the initial spinal tap tests did not indicate the problem. There are many other tests that we are still waiting to come back because they cannot do some of the tests here. There are only a few places in the country that can test for those things so it will be a few days, possibly weeks before all the tests come back.
All of her doctors believe this could possibly be an auto immune response, so they are starting her on IVIG. The way he explained it was the IVIG introduces antibodies that fight off the antibodies that her body has produced. Sometimes the body thinks normal things are foreign and produced antibodies to fight it off, kind of like what happens with an allergy. He thinks this will help to reduce the inflammation in her spine and give her some relief. They are still continuing steroids also.
Chris and I are currently in the PICU waiting room so that they can insert a PICC line in her arm. I’ve been assured this is a normal thing for them to do for kids that will be here a while. They are sedating her slightly in order to get the PICC in. Once she gets done with that, me and Nurse Kelsey are going to give her a bath.
We have had a few people ask about visiting, and while we love visitors, we do ask that any visitors wait until the time when she is moved out of the PICU. We do not want to risk further infection from outside sources, especially with the PICU line in.
Please continue to pray for my sweet girl. She needs it.
My punkin’ did great while getting her PICC line in. They said she didn’t even fall asleep and even smiled when they told her to cheese for the camera (X-ray).
Nurse Kelsey and I gave her a bath, changed her bed, and washed her hair. She wanted “Elsa hair” so I gave her a side braid.
She says she’s feeling pretty good and is now watching Netflix on the iPad.
Edit: I think I confused some when I said she was feeling better. She is definitely feeling better, but is still unable to use her limbs. Baby steps, but we are praying for complete healing!
My sweet girl is having a stressful night. She is in a lot of pain and crying about her back hurting. Rubbing her back and using the heating pad isn’t helping much, but we finally got her settled down and watching Trollhunters (her favorite show).
Fortunately we have the option to give her a little morphine if it continues. We are working on allowing her body to heal itself and accept the IVIG. Nurse Kelsey had treated several patients with transverse myelitis and said she had seen improvement in her other patients after getting the IVIG.
We have prayed over her for complete healing and are trusting God to comfort our baby girl. If you could please say many prayers for her, we would appreciate it.