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 don’t have good news to report today.
Annadelle’s doctor has informed us that the tube will not be coming out this week. The muscles in her chest are not strong enough to support her being off the tube and she is still breathing almost solely from her diaphragm. They expected her to be much stronger than this by now, so they are keeping her on the tube until next week when they can assess how she is then. They have told us it may just come down to pulling the tube next week and praying we don’t have to put it back in.
Dr. Sanchez said he is hopeful she will improve over the weekend because he notices an improvement in the movement of her left hand, although it is very slow going.
I would be lying if I told you I wasn’t upset that we haven’t progressed more than we have. This mama is more than ready to go home and snuggle with her sweet girl. Watching her cry when she sees a Chuck E Cheese commercial is gut wrenching because there is not much I can do to lift her spirits. She is up and down at all hours, constantly having us hand her this or do that or scratch this or rub that.
It seems as if our journey is never-ending. I would ask for extra prayers today as we would give anything for her to be able to breathe on her own and get back to where she once was.
I sit here at my keyboard not knowing exactly what to say. I am angry, frustrated, sad, and so many other emotions that I don’t know how to properly express.
I made an update earlier that we did not receive good news today regarding extubation and that still stands. Annadelle woke up this morning in a great mood after having a good night’s sleep. A little before lunch, she did some PT and giggled with the therapists. But after lunch, we saw a decline in her overall status.
Chris and I heard mucus rumbling around in her chest all morning. We repeatedly said something to our nurse and both RTs, but for reasons unknown to us they did not opt to bag suction her as they had been doing. Her XRAY from 4:00am looked pretty good, so I guess they didn’t see a need in doing so when they arrived on shift this morning at 7:00am.
Around 12:30pm, Annadelle’s heart rate began to increase significantly. She wasn’t anxious or in any pain, but the nurse and PA continued to tell us she was just agitated and that it would resolve once she calmed down. I repeatedly said no, that is not the case, but of course my concerns went unnoticed. Over the next hour, her O2 saturation declined significantly, heart rate increased again, and she developed a fever. I was the one who took the thermometer and saw her temp had risen to 102. It was obvious she was having a difficult time breathing on pressure support.
After another hour, our nurse finally addressed our concerns about her elevated heart rate, blood pressure, and temperature. I requested the PA, Cassie, come and speak to us. I knew this was a sign of infection and Cassie was able to confirm that. Annadelle has yet another infection, the cause unknown at this point. They have taken several labs that will be cultured, but they won’t know a final result for at least 3 days.
In the meantime, Cassie has started her on 2 antibiotics in the hopes of keeping her from becoming septic. They have told us possible causes of this infection vary- it could be the mucus plug in her right lung, it could be from her central line, it could be gastrointestinal…they don’t know. Right now they are running the new antibiotics and increasing her settings on the vent. In essence, we have taken a huge step back.
Chris and I have since discussed transferring her to a different hospital sooner than we had anticipated. I learned today that her doctors have not been in contact with the TM clinic at UAB like we were previously led to believe. It seems now we are just treating hospital-acquired infections rather than the myelitis. I have had to say something to several hospital employees about the proper use of PPE when dealing with her, so to find out she has developed a second infection has me furious. I am trying my best to give my worries to God and trust that he has a good plan for our sweet girl, but I can’t overlook possible mistakes being made by hospital staff.
Our biggest issue may be the costs associated with additional care at another facility assuming our insurance company will not cover her at a different hospital. Typically as long as a hospital has the ability to treat a patient for a specific ailment, insurance companies will not pay for care at another facility that could essentially do the same thing. This is just something we are going to have to look into and deal with.
I don’t know how much longer I can take seeing my baby girl in the position she is in. I cry every time I think of how our life was just a month ago. I am trying my hardest to hold on to my faith, but I would be lying if I said He isn’t testing me far more than I can bare.
Please pray for us tonight. We need it.