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.

Her xrays from this morning are showing a good improvement as far as the infection and the edema from yesterday. She is slightly “negative” at around 380ml. This is what Dr. Sanchez was hoping for so he is pleased.

She had a large bowel movement this morning so her doctors do not think she is developing an Ileus as they had been afraid may happen. It is common for this to happen on the vent as a result of pain medication, so we asked that she be weened from the fentanyl as soon as possible to keep an Ileus from occurring. That’s the last thing we need!

The plan is to continue the antibiotics, ween the fentanyl, and continue to let her rest tonight. Tomorrow Dr. Merritt is back (we love her!) and we will discuss plans to ween down on the vent settings. She is doing well at a high rate so the plan may be to ween the PEEP. My medical friends will know what that means, but if you don’t it is basically lung expansion. The vent is expanding for her a lot and the hope is that her muscles surrounding her lungs will start working again and she can help her own PEEP.

It may just come down to pulling the tube and seeing how she does. Some kids don’t do well on pressure support but do fine off the vent. Breathing through the tube is like breathing through a straw, and sometimes kids just do better without it.

Dr. Sanchez seemed surprised that we saw such an improvement overnight, but I told him that would happen. I am confident that she will get much better in a short period of time and surprise her doctors. I trust that her doctors will be blown away at how she recovers, and I can’t wait to prove to them that God answers prayers!

I know God is teaching me something, I just hope He knows how sad I am while He is doing it. I’d give anything to rewind time and be home snuggling on the couch with Annadelle. What I wouldn’t give to fix all the times I took her for granted.

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