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.
Annadelle has slept okay throughout the night. She was woken up periodically crying and telling us her back hurts. The doctor has allowed her a few doses of morphine because of it. They are also giving her Tylenol every 4 hours.
The respiratory therapist has been visiting often and giving her breathing exercises. She had previously done very well with these, but the last one around 4:00am was not very good. He believed it could be because he had just woke her up, so he said he would try again in a little while when she was awake.
The good news is that her oxygen has been lowered from 100% to 70% and she is breathing well when they take the mask off. There is a possibility she will be able to use a nasal cánula during the MRI, but they may also do the breathing tube to be safe.
This whole ordeal is terrifying and honestly I am already exhausted. I feel so helpless not knowing what is wrong with her for sure and not being able to fix it for her. I also feel guilty for waiting so long to bring her here, but I was only taking the advice of professionals. I should have listened to my motherly instincts.
The doctor at the ER was friendly but made me feel as if we should expect the worst, so I’ve been a basket case since we got here. I have had very little sleep from worry and from her waking up in pain. I want so badly for her to be well and for us to go home and play.
Again, thank you for the support. I will update as we know more.
For some reason the MRI got pushed back to after lunch. As far as we know, they are trying to determine the best way to transport her (on nasal cánula, breathing tube, or possible MRI-compatible CPAP). She is on CPAP right now and doing well with breathing.
The neurologist came in a few minutes ago and did some movement tests on her like he did yesterday. She was able to move her left leg, toes, and left fingers (something she could not do yesterday), so he told us that he saw improvement.
There are two things we are concerned about now. One is a mysterious rash that will appear on different areas of her body, then vanish within a few minutes. They are stumped as to this rash. The other thing is her overall weakness. Her breathing his more shallow than yesterday and she is very weak. She has not had anything to eat or drink since breakfast yesterday and is constantly asking for food, but she is NPO until after the MRI.
We have not seen the attending physician yet so we are not sure of a game plan or any other updates. It is really just a waiting game.
The attending called in advice from the infectious disease doctor who came to speak with us. He asked several questions like if we had animals, if she had been sick, etc. He seems to think it could be a bacteria that caused her to have the stomach virus about a month ago. He said there is a certain bacteria that presents as a gastrointestinal virus, then a few weeks later leads to the same symptoms she is having now. He is going to suggest they do a lumber puncture in order to test for this bacteria and many others, too. They will very likely sedate her for that depending on how she does with her breathing.
We are waiting for her to be taken down for MRI now. They are going to put her on a special CPAP for it instead of a breathing tube. They will likely order her something for anxiety during the MRI to keep her still since they will have her strapped down. That procedure will take over an hour and a half, at which point we can not be with her. She has never been under sedation so I am extremely worried about that.
They are going to give her another dose of steroids since that seemed to help a lot last night.
She is sleeping right now. She has been very tired and has fallen asleep easily. They had reduced her oxygen to 60%. They will take her off when she reaches 30%.
MRI is complete. Prior to the MRI, the attending did not seem optimistic about her breathing and wanted to go ahead and place her on a ventilator. He believed she was much weaker today compared to when he saw her yesterday, which is the opposite of what he expected. Needless to say, I was a wreck on the way to MRI.
They allowed me to stay with her during the MRI. She cried a lot as they first put her on the bed. She is basically unable to move, so watching her cry with her otherwise motionless body was the worst thing I have experienced to date as a parent. They decided to give her a small amount of morphine to help the pain, and shortly after she went to sleep.
She was asleep for the majority of the test, but woke up with about 10 minutes left crying. She was moving slightly so they had to redo the last scan, causing the time we were in the lab to be longer.
She was really a trooper. After the test, she was alert and talking a little. She told me she wasn’t in pain.
Once we got back to the room, the attending was outside the room with a team of 5-6 doctors. They all had their laptops and were working on a care plan. The attending (Dr. Sharma) came in and told us the MRI confirmed what they expected from the beginning- transverse myelitis.
The next step is a spinal tap that they will do in the next hour. The spinal tap will tell them the cause of the myelitis, whether it be viral or bacterial.
Treatment for the myelitis is steroids, according to Dr. Sharma. She has not had anything to eat since yesterday morning and is too weak to chew or eat, so they are going to place a feeding tube in through her nose. Dr. Sharma believes these nutrients combined with high flow oxygen during the day and the CPAP at night will help her to recover. At least, that is my prayer.
The spinal tap is done and we are waiting on results. Nurse Olivia said she did wonderfully. They even brought her a brand new Barbie with ice cream stand!
Our very close friend Tyrel Tucker came to visit us (from many, many, many hours away!) and brought “Guardian Crab”. He said it has brought him luck so he has passed it on to Annadelle for continued healing.
Also, Annadelle’s teacher sent her a sweet video of her classmates giving well wishes! The video attached here shows her watching it.
Thank you to everyone for all the prayers and offers of support. We have been told to expect a long stay here at Children’s- at least a week, if not months.
I don’t have much for an afternoon update except for some quick information about treatment.
The MRI confirmed transverse myelitis, a very rare neurological condition that damages the nerve fibers in the spinal cord. The spinal cord becomes inflamed and hinders the brain from sending information to vital organs and extremities. Only around 2,000 people are diagnosed with this condition each year.
Treatment for TM is steroids, which they have already placed her on last night. They gave her a large dose yesterday so they will give her a smaller dose tonight around 11pm. The steroids (hopefully) reduce the swelling in the spinal cord and allow the body to repair itself and reestablish those connections.
One of the largest concerns with this condition is that the brain will not be able to get messages to the muscles that allow her to breathe. This is why they have her on oxygen and have considered putting her on a ventilator. Right now, she is on high flow oxygen through a nasal canula at 30% (the minimum – she was on 100% when we arrived), but tonight will be placed back on the CPAP machine to help her get some rest. It is our hope that her breathing will continue to improve and her body will heal itself.
Because she has not eaten since yesterday morning and has told me she is hungry several times, we discussed a feeding tube with the doctor. He agreed that putting in a tube would help her to get nourishment that would help the healing process. She did not like the tube at all, but after some morphine, she is resting until they put her back on the CPAP machine for the night.
Friends, I can’t thank you enough for the support and prayers. I would like to be able to say that I am a strong mom, but I am not handling this well. Annadelle is my entire world and the thought of losing her is causing me extreme worry, anxiety, and sadness. I continue to pray unceasingly that God will heal my baby girl. We have promised her a trip to Chuck E Cheese and Chick-fil-A once she is well enough to leave the hospital, a fact she has reminded us of several times.
After shift change, we are back with Nurse Christy and we absolutely love her. She is very attentive to Annadelle. We have a new attending on call tonight who has treated several TM cases. She is confident Annadelle will improve, and I pray she is right.
This new attending has stopped her morphine and is rotating Tylenol and Ibuprofen. She said the morphine was causing her to have shallow breathing, so we want her to be able to be more alert and breathe better. We are also utilizing heat and cold packs, but Annadelle prefers that I just rub her back.
She is back on he CPAP machine for the night. We are praying for a restful night.
My poor baby, she is hurting so badly. I wish God would put me in her place instead. All of the times I have taken her for granted I severely regret now. Please, hug your babies tight tonight and always. I would give anything to have a happy, healthy child right now.