Change, when it comes, cracks everything open

Yesterday afternoon my mom got here, thank the gods. We had a conference with the doctors about Jasmine’s biopsy results. It’s not good. The best case scenario is that she has an extremely slow recovery — at least another month on the ventilator — and changes some meds and when everything is said and done, is in really poor shape with her lungs and possibly facing another transplant. She has one week to show some signs of recovery. They are starting steroids today, hoping to help stop the inflammation. If she doesn’t heal, if the thing that’s ruining her lungs is unchecked, then we have to start talking about the most peaceful way of letting her go.

Basically, what is happening is that she had some kind of viral infection back at the beginning of January. The bug that caused that infection is gone — it’s really not part of the picture anymore. What it left behind is a severe reaction in her lungs where the tissue started to scar and that scarring is making it extremely difficult for her lungs to inflate properly. The analogy we were given is to imagine the difference between trying to blow up a balloon (the way they were before) and trying to blow up a rubber glove used for washing dishes (the way they are now). The tissue is very stiff and non-elastic. If this process is arrested, as in the best case scenario, then she has a chance to go home with severely reduced lung function. If it is not, the the other option. Her kidneys are also starting to falter under the strain of all the medication, which is another complication. Until now, Jasmine’s body has managed to handle most of the meds pretty well.

Jasmine is heavily sedated and paralyzed with medication. She is not awake. This is to keep her as comfortable as possible. A physical therapist comes by once a day to work with her body to ensure that her muscles are getting some stretching and moving. Doctors, nurses and other staff members come into her room red-eyed and haggard looking. No one is untouched by this; Jasmine is a favorite at the hospital. The nurse taking care of her yesterday was one of the ones who took care of her immediately following her transplant. Jeff and I both could hear the hitch in her voice.

I am exhausted and completely wrung out. I alternate between numbness and tears. Yesterday I found myself sobbing in the shower without being aware I’d started. I keep having flashes of Jasmine’s life, her sprint down the beach in ’99, her singing along with a cassette of lullabyes back in ’94, running and playing on the playground at South Family in Flagstaff back in ’96, and last night, watching Jeff with her, her birth in ’93. Those are the moments that rock me. Those and the ones where I think of all the things that are unfinished — books, school, guitar lessons. It’s hurting my heart — I have a perpetual feeling of tightness there. Still, I am ready to let her go… to let my little dragonfly out of the pond… if that is what is best for her.

Some housekeeping — we are no longer at Ronald McDonald House. If you want to send cards for Jasmine, send them to her via the hospital. The address is below:

Jasmine Van Steenberg
c/o St. Louis Children’s Hospital
PICU Bed 11
One Children’s Place
St. Louis, MO 63108

We’re only answering the cell phone if it’s the hospital until the 17th as we are out of minutes. We really appreciate all the calls and emails — it’s part of our support system that I really look forward to receiving. Several of you have offered to come stay — right now just isn’t a good time for that, but I really do appreciate the offer.

Please send love and prayers — they sustain us.

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