October 14, 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. 

Today was not a good day at all. I know I talked about it in my last post, but I don’t have good news to deliver tonight like I was hoping I would after having such a rough day.

The mucus in Annadelle’s throat and lungs from the cold is causing her body to tire out pretty quickly. She doesn’t have a lot of strength to begin with, so every little bit of energy she uses just drains her quicker than it would any other kid. Her doctors are very worried that her lungs will give out soon because of how hard she is working to breathe.

Because of this, they have decided to place her back on bipap overnight. The machine forces air in and out and keeps her from having to work so hard to breathe. She was on it before when we first got to PICU almost 2 weeks ago, but I’m worried we will still have issues with this mucus blocking her airways.

If the bipap doesn’t work, our next possible step is intubation. They do not want to do this because it significantly increases her risk of pneumonia and is just more risky overall. We obviously don’t want to have to do it, either, but we will if need be. I know her little body can’t handle another week of this cold.

I know I have said this a hundred times, but the truth is I am wearing thin quickly. I have tried to be as open and transparent as possible in my posts. I know no one knows how I feel because you aren’t experiencing it. There’s really no way to describe how I feel besides helpless, worried, and emotionally wrecked.

Please pray heavily for our girl now. Please do not text or call just yet- we will give a full update later. We just need emergency prayers!

Annadelle has now been placed on a ventilator. Late last night she became extremely agitated, almost to the point of delusional, and it was determined her CO2 in her blood was more than twice what it should be. That means she was not able to breathe out normally like we would.

The ventilator is currently breathing for her 100%. They will continue to check her blood gas levels to see if the CO2 comes down. I was told it can take a while for that to happen. They were also able to get A LOT of secretions out from the tube and are believing it to be due from a bacterial infection, so they are starting her on antibiotics.

It was extremely distressing for me to see her intubated. We were told she will likely be like this for a few weeks.

There are no words to express how sad I am, or how overwhelmed I feel at this point. My baby girl needs divine intervention. I have prayed and prayed until I don’t know how else to pray.

Our sweet girl is resting peacefully. Seeing her with the tube in was very hard for me this morning, but I know it is helping her.

Nurse Kelsey gave us some good news a while ago and told us her CO2 level had come down to normal range. Her PH and all that was normal, too. It is a step in the right direction.

I don’t have much else to update right now, but I will try my best to update later today. Please continue to pray for us. I am not giving up on God and am assured He will not give up on my sweet girl.

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