Fear is watching your child get a cold and within thirty-six hours, go from totally fine to breathing about 60 breaths per minute and knowing you are at least an hour and a half away from the nearest hospital.
Fear is calling out the doctor at ten o'clock at night to just "give them a head's up" that it could be a long night only to immediately hear, "Give me ten minutes. I'll be right there."
Fear is having that doctor page out the on call pediatrician to consult about a middle of the night transport because your child is too unstable to wait until the ferry runs in the morning and then hearing them tone out the ambulance to your house.
Fear is getting admitted to your local hospital at five in the morning after nearly six hours spent in the ER, only to realize your child is getting too sick for that hospital to manage.
Fear is hearing the respiratory therapist page out the pediatrician at work from your child's room and hearing them say to the receptionist, "I don't care what he's doing right now! You tell him I'm with Tess Reidy and we are at maximum oxygen flow on a non-rebreather mask and she's still not stable and he needs to get on the phone and talk to me!"
Fear is hearing the words, "Dr. V has cancelled his afternoon appointments and is on the way. He's calling Portland and having their pediatric intensive care team come get her."
Fear is asking if it's going to take a while and hearing, "No. He told them to 'scramble' so they are making her a top priority."
Fear is once again meeting the transport team and stressing that I have not signed a DNR on Tess. She is a FULL CODE.
Fear is the talk of intubation.
Fear is literally driving right behind the ambulance that is carrying your very sick child and not knowing what's going on in there.
Fear is getting to a regular room at the bigger hospital only to be told less than twenty-four hours later that Tess's pneumonia seems worse and having them order a repeat chest X-ray only to tell you that she is very serious, her lung is a total "white out" and that they think it has collapsed.
Fear is having the doctor order an ultrasound to check for fluid on the lungs and hearing the nurse tell radiology that your child is too sick to go down to them and they need to get up to her STAT.
Fear is the doctor telling you there is fluid there and that they are moving your child to ICU because she is in respiratory distress.
Fear is telling your other two kids, who are constantly checking in and asking if they need to come, one from Europe, and one from New York, and not knowing if you are doing the right thing by telling them to just stay where they are.
Fear is the talk of chest tubes to drain the fluid but at what risk overall?
Fear is more discussions of intubation with the doctor's worry that if they do intubate, she would never be able to be taken off of it because her lungs just aren't strong enough.
Fear is long talks of "decisions" that may need to be made but thankfully, never were.
Fear is meeting with the pulmonologist, who you love right at the first meeting, and having them use the diagnosis, "Neuromuscular Respiratory Failure", which is what Tess has.
Fear is hearing the words "Palliative Care" and asking us to meet with them and get Tess set up for it.
Fear is being sent home with new equipment to learn how to use on your child.
Relief is hearing the doctor say that can't believe how much better she got overnight even though she is still very sick.
Relief is seeing that smile from her, weak though it may be.
Relief is hearing a giggle.
Relief is watching her body stop the awful shuddering it had been doing in an effort to keep breathing.
Relief is hearing that Palliative Care in Pediatrics is different then with the elderly.
Relief is watching your little warrior fight her way back and show everyone just how tough she really is.
Relief is hearing the words, "We're really pleased with how she is doing."
Relief is bringing her home.
This is about the only way I can write about what happened over the past ten to eleven days. There are probably tons of typos and a grammatical error or two but hey, I'm tired!
They were the scariest days of my life and I am just trying to focus on the good stuff now.
We still have to meet with the Palliative Care team and need to make decisions for Tess, but we are home and she is recovering. For now, that's enough and we are beyond grateful.
This is our warrior girl. This is the face of fierce. :)