Some of you may not get that reference to the “Days of Our Lives” soap opera. I hate to break out such a reference but geez, the days of OUR lives can be far more riveting. I want to begin by saying that our life is not all gloom and doom. We share a lot of joy and laughter in our home. More often than not, we’re living as close to a normal life as possible when you have a transplant child.
Sarah visited Children’s for follow-up labs today and they weren’t what we wanted to hear but were half-expected:
Scoop #1 – There are outward signs the EBV infection is not going away. Sarah has had this ever-increasing rash on her face and Patty said her poor little lips are so cracked they’re bleeding each morning when she wakes up. Rash is one of the signs that EBV is not leaving the body quietly. Sarah also hasn’t been able to shake a cough and has been waking up multiple times during the night crying out. Another sign EBV is causing trouble.
Scoop #2 – Sarah’s liver labs have jumped slightly since the docs lowered her tac dosage to .5mg daily. Still, there is always the concern of rejection and with the EBV present, things are that much worse.
On tap: Patty and Sarah trek back down to Children’s early Thursday for 7am labs, followed by an ultrasound at 730 and liver biopsy at 915. Maybe we can call this the Carnival of Tests. Sounds so much better than “battery” of tests, don’t you think? The biopsy will also be tested for lymphoma in the liver. There’s that OTHER ‘L’ word.
Once the carnival is finished, they will admit Sarah for a 2 day viral treatment to combat the EBV. Depending on what else comes back on the labs, as in acute rejection, the stay could be as long as 4 days – our customary stay time at the luxurious Seattle Children’s resort.
This comes at a bad time for me (is there ever a GOOD time?), as we are short-staffed at work and I need to be there 10 hours Thursday and 12 hours (at least) Friday. If you could pray for my mental faculties, the ability to focus amidst our chaos, I would appreciate it.
It goes without saying that Sarah and Patty need your prayers while at Children’s. As frustrating as this rollercoaster ride can be, if Sarah comes out of this with the EBV gone and no liver damage, I will be exceedingly thrilled.
A happy reminder: Earlier this afternoon it hit me that today was the 2 year anniversary of Sarah’s Kasai surgery when she was two months old. My how time flies!
No comments:
Post a Comment