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.
Even with the potential reaction to receiving the IVIG too fast last night, Annadelle did well overnight.
Today she has already been changed and put in a special wheelchair that will allow her to have some time out of the bed. Her muscles are sore from being still so long despite us moving her around trying to keep the stiffness at bay.
We have a new nurse today (Lindsey) that is taking good care of her. We are watching her medication administration like a hawk.
My baby girl still needs a lot of prayers. Today makes 5 days in the PICU, with many more to follow. She is starting to become sad now that she realizes she is missing school and cannot do the things she has always done like play or eat by herself.
Today has not been as eventful as some of our others, praise Jesus.
Chris did not sleep at all last night and only slept for 2 hours the night before. He is so worried about his baby girl. I offered to stay with her and let him go to the Ronald McDonald house to sleep, but when he got there he just couldn’t stop worrying about her and ended up coming back. Bless his heart, he is exhausted.
He is upset about the medication issue we had last night and has not been able to stop worrying about it. Since the nurse started that second dose, Annadelle has been having episodes where her heart rate becomes elevated and she breaks out in a sweat and a rash over her arms, entire chest, and upper legs. The doctors have assured us that is normal with transverse myelitis, but it did not start until Nurse Hannah gave her the IVIG incorrectly, so my mommy instinct tells me it is closely related.
In the hopes of easing his mind, I asked to speak to the nurse manager. I was told they do not have a nurse manager on the weekend, but that she would be notified first thing Monday morning. In the meantime, the daytime charge nurse caught us in the hallway outside of PICU and assured us this issue was not being taken lightly and would be addressed with upper management. I have been trying my hardest not to get too upset about this because I know I will just worry myself to death.
The good news is that today’s attending believes Annadelle is on a progressive incline health-wise. Her vitals are good and she is breathing well, so they have now started to ween her off the high flow oxygen. She was placed on a 10 a few days ago and they have now moved her down to 8. If she does well the rest of the day, they will move her to 6 and continue until she is able to be placed on the nasal canula. Once she comes off the high flow oxygen and completes her steroid treatments, we will be moved to another floor and out of the PICU.
I have had a few people ask me for the address here at the hospital. Until we are moved out of the PICU, the address is:
University of South Alabama Children’s and Women’s Hospital
PICU, Rm 14, Patient Annadelle Faulkner
1700 Center Street
Mobile, AL 36604
I have had a few ask me for my home address, as well, but I don’t wish to share it publicly. If for some reason you need it, please send me a private message.
As usual, please continue to pray hard for our sweet baby girl.
I was able to show Annadelle some videos sent to her by a few friends and family. She loves getting to hear from her friends, especially since she is starting to get very homesick.
If you are able, we would love it if you could send a short video to Annadelle letting her know how many people are praying for her and cheering her on. Please send them to me through Facebook message and I will show them to her when she is good and alert.
Pretty please 🙂
I decided to swing by the Ronald McDonald house where we were able to get a room to take a shower and wash a load of clothes. We have not had to wash clothes yet because my mom has been driving back and forth from Orange Beach, taking our clothes with her and bringing them back clean the next day. (Isn’t my mom the best!?!)
The RM house is nice, but the items here are mostly donated and one of the washers and dryers does not work well, so I’ve spent the last two hours waiting on clothes to dry. I feel some anxiety just from being away from Annadelle for such an extended period of time, even though Chris is with her and assures me she is fine. As a mom, I just can’t help it!
When I make it back to the room, I’m going to have to force Chris to sleep and let me take first shift. He’s a strong man, no doubt, but seeing his baby girl in pain has proven to be a bit overwhelming for him (and me). I truly don’t know how to explain the way we feel in this situation. It’s not a feeling that is easy to describe, but I can tell you that all of the daily calls, texts, messages, videos, and comments makes it a bit easier to handle. It has helped us to realize we are not alone and that our sweet angel is loved by so many. I feel like all I have done is say thank you (or, if I’m talking to Nicole Watson, apologizing constantly. lol). I hope each and every one of you who has taken the time to send us some love realizes just how much that means to us. It is obvious we have some pretty amazing friends.
We are back with Nurse Christy tonight and we absolutely love her. She treats Annadelle as her own and even let me literally cry on her shoulder the first night we were here and many times after. She embodies what I think it means to be a nurse- to provide professional medical care combined with a personal, warm touch. I decided to submit her name for a nomination for The Daisy Award, an international award for extraordinary nurses who go above and beyond to provide exceptional care to patients and families. We are also submitting a card for Nurse Kelsey who was with us during Annadelle’s PICC procedure and a few other scary moments for her. I hope they get the recognition they deserve.
On a side note, I received a call out of the blue the other day asking me to join a team of media professionals for a possible television series investigating cold cases for Investigation Discovery. I haven’t had time to slow down and do much research on the company that contacted me, so I’m not sure if it will lead anywhere. I only mention this because I’d like to ask that when you say a prayer for my baby girl tonight, you also say a quick prayer for that situation to see if it is credible and pans out in the end.