Monthly Archives: October 2018

October 31, 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. 

My sweet girl had a rough night. Today marks one month in the hospital, and I can tell you our girl is soooooo over it.

While the air on her belly has slowed down a bit, the pain in her spine has returned. She has been on a fentanyl drip for a while and they have been weening her off of it, so Dr. Merritt thinks the pain could be from the lower fentanyl.

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October 30, 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. 

Over the past few days, Annadelle has been experiencing pretty severe pain from excessive gas. We have been having to pull air from her NG tube at an alarming rate. At times the nurses can’t keep up with as much air is filling in her belly.

Dr. Merritt believes this is due to her being in the vent, being so awake, being extremely anxious and swallowing air. Each day it has gotten worse and worse, so she has been slowly weened down on the vent. She is at a relatively low PEEP setting right now and is breathing okay. Hopefully she will do well on a quick pressure support trial tonight. If she does, we will discuss removing the tube on Thursday to see how she does. They had discussed a possibility of removing it tomorrow afternoon, but I asked for them to wait until Thursday morning so she could have somewhat of a good Halloween. Halloween is one of her favorite times of the year and she is very sad she can’t go to any fall festivals or trick or treat.

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October 29, 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. 

My sister-in-law Heather Stephens set up a T-shirt fundraiser for Annadelle. This is the link for preorders. Please consider visiting this link and sharing with your friends.

Click here to check out the t-shirt fundraiser.

October 28, 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. 

After a busy morning, we’re relaxing watching Puss in Boots.

Rounds this morning revealed a slight improvement in Annadelle’s condition. Her CRP is down, indicating the antibiotic is doing what it should. ID suggested changing to a stronger antibiotic anyway. I couldn’t remember if I had updated this already, but the “new” infection was confirmed to be h flu (haemophilus influenza) again. This is the same thing she had the first week, but apparently they either didn’t get rid of it with the first round of antibiotics or it just returned. They believe the stronger antibiotics will help to get rid of it for good.

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October 27, 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. 

I had a moment of doubt yesterday.

I admit that I thought God had given up on us. It seemed as if Annadelle’s condition was only continuing to get worse and worse, that the thousands of prayers that have been going up for her were unheard.

Throughout the day, my anxiety and worry hit a high and I definitely had a breakdown. I cried and cried when Dr. Sanchez fully explained to us why he is so concerned about Annadelle’s chest rise. I was apparently confused about what he had been trying to tell me, and that is that it isn’t necessarily the lung infection that is affecting her ability to breathe, but the transverse myelitis itself. She is breathing almost completely from her diaphragm because the muscles surrounding her lungs are so weak. He said even when we were released to go to the floor a few weeks back this was the case, but her doctors were hoping the lack of chest rise would resolve. It didn’t, so when she got the cold, it went downhill from there.

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October 26, 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. 

We have had a very rough night here in the PICU.

Over the last two days, Annadelle has started complaining of significant back pain despite being on Presidex and Fentayl. The bolus doses of both seem to not do much good in helping to calm her or ease the pain much. At one point tonight, Chris could not calm her at all because she was crying so much from the back pain.

Her doctors are not sure what is causing this onset of increased pain. Chris and I suspect there is something going on in her abdomen because for the last two days, they have had to pull a lot of air off her stomach through her NG tube. For reference, prior to this week they had pulled a maximum of 3 syringes of air over one shift, now it is about 7 syringes of air over a course of 1-2 hours. She will have an X-ray of her abdomen done in about an hour. Hopefully that will let us know if it is something from her abdomen or if we need to look for another cause of the pain.

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October 25, 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. 

One of the cultures from Annadelle’s sputum is growing and has been confirmed as Graham negative rods. I could be saying that incorrectly. The point is something is growing but they aren’t sure exactly what it is, just that it is probably normal flora that resides in our mouths and nose even when we aren’t sick.

Chris and I spoke with the attending about our concerns about getting yet another infection. We spoke to him about the possibility about transfer to another facility but didn’t get very far. He said he is going to speak with a Dr. Ness at UAB who is a specialist on transverse myelitis and that he will speak to her about what she thinks of a transfer.

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