Wednesday, December 6, 2023

17...sick...and no scope next week

 So Lillian had her 17th birthday and it was so much fun.  She enjoyed herself so much!   A week later, she got sick. A respiratory infection, I'm sure. I had to go up on her treatments every four hours and prayed things would not get worse.  She had an appointment today with her pulmonologist that they added us on to so he could give clearance for the scope.  He did not clear her.  So the scope we have been waiting to do for well over a year to check her Crohn's disease is not put off until March. I'm fine with that, really...I don't want her under anesthesia sick and neither do the doctors.  

Now, to say everything was smooth wasn't.  I had to leave here (have her fed and treatments done and have Ezekiel to school by 8) as soon as I dropped off Ezekiel to get to her 0930 appointment.  Guess what, she wasn't on the schedule.  I recently got a new phone and I couldn't log in to mychart to show the messages that clearly stated she had a 0930 appointment.  After quite some time, a young woman came out apologizing over and over that she put the date in the system wrong and we could go ahead and see the nurse practitioner...(in this case, I would have preferred her doctor but what. ever. ) Immediately, I was near tears, which is cray.zay.  Why should that make me dissolve into tears???  Lord help me be more gracious....ugh.  

They are putting her on a round of steroids and if there isn't significant improvement by Monday, I'm to call back. I'm also to increase her inhaled steroids for the forseeable future.  She's supposed to have an infusion next week and I'm thinking that's not going to happen if she's still in this condition.

I'm tired.  It's been a long busy weekend through today with my husband at work.  I'm so grateful she's not in the hospital.  I can't help feeling a bit discouraged.  She's never cleared up from this previous nasal issue either.  I'm rambling.  

That's the story for today.  Pray for her.


  1. Prayers for you and your sweet Lillian!🙏🙏🙏🙏🥰

  2. Tears are perfectly ok...we have to vent & the LORD sees & understands and stores our tears in a bottle. HE wept at times too. HE knows our frame & HE gives the grace & mercy we desperately need.