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.
Lil’ punkin had an okay night. I took the first half of the night with her and she kept waking up periodically but would calm down when I would hold her hand or rub on her. At one point her respirations got low but it quickly stabilized. Nurse Hannah said that it was not unusual for some children to breath less as they sleep, and that she could have just been exhausted from her busy day yesterday.
Dr. Sharma is not in today but the other attending, Dr. Vidal, is here. She has not come around yet, but we did hear from Dr. Estrada (infectious disease). He said her stool sample showed she had some E. coli, but that would not be abnormal for a child her age. She was negative for the campylobacter which is something they were considering as the cause of this. He said that doesn’t necessarily rule it out but that the blood test for campylobacter antibodies would either rule it out of confirm the cause. We will just have to wait on those other tests.
Dr. Estrada was pleased to see she was moving a little bit more today. We gave her a bath this morning and she was trying to help us roll her over. She was also able to hold her head up better today. Dr. Estrada said baby steps are a good sign and he is hopeful about mobility recovery. We haven’t seen Dr. Martenz (neurologist) yet.
Right now she is sleeping soundly after getting a little bit of morphine for pain this morning.
Please continue to pray for my baby girl. I hate to see her in so much pain and not being able to cuddle her or fix it for her. We have a long road ahead of us and the hospital stay is already proving to be overwhelming.
We have had a pretty good day today overall.
Lil’ punkin got wore out when the physical and occupational therapy crews came to see her. She will be seeing a lot of them during our stay and possibly many months or even years after we are discharged. PT was able to get her to push with her left leg which is definitely something she could not do yesterday. We have seen tiny improvements in her mobility, like her trying to help us turn her and holding her head up. Doctors have reminded us it will be a long road, and as long as we don’t see a decline in health, she should steadily get better.
They are keeping us in the PICU until her breathing gets a little stronger. She is still on high flow oxygen, but Dr. Vidal has ordered she not be placed on the mask tonight. They did not put her on the mask until late last night to see how well she was going to handle it and she did pretty good, so tonight they are going to leave it off all together. When she is taken off high flow (hopefully in the next few days), we will be moved out of ICU for the remainder of our stay.
They have given her another dose of IVIG that will run over the next 15 hours. They are also giving her a smaller dose of steroids at 10:00 tonight until they ween her off of them. After that, it will be up to her own body to repair itself.
We are still continually praying for complete healing for this precious girl of ours. We ask that you continue to pray fervently for her, as we know God can and will work a miracle in her. Our story will soon be a testimony to share showing God’s love and grace. We have no doubt.
The resident on call tonight just took us aside to inform us of a mistake made regarding Annadelle’s care.
The nurse from last shift administered Annadelle’s second dose of IVIG incorrectly- giving it to her over a course of 3 hours rather than 10 hours like it was supposed to be. She gets a total of 25 grams, 20 of which was already given. They are now starting her on the remaining 5 grams over another 3.3 hours.
Complications from giving IVIG too fast can be like an allergic reaction, including rapid breathing, fast heart rate, or low blood pressure. We are going to have to keep a close eye on her for the remaining 3 hours to make sure she doesn’t experience any of this. So far she is good, but obviously it could change.
Friends, I am not happy about this at all. I’m glad Nurse Christy and Dr. Fox (resident) informed us of this, but I’m not happy my baby girl did not receive the proper care because someone was just ready to get off work.