Trach scar issues

To pick up where I left off...

After her scope in DC on November 30, her trach scar "flared up" again.  It swelled up and looked like it was filled with fluid. Her secretions increased and turned orange - bright orange.  It was crazy. I watched it closely every day.  I took pictures of it every day so I could see changes and study them.  I sent those pictures to her doctors.  Something must have gone wrong with my email, because I didn't hear back from any of them, and that has NEVER happened before.  Her doctors are so incredibly responsive and attentive to our issues.  They know that I only email them when I feel it is absolutely necessary.  The two days I waited for a response were excruciating.  I went straight to the top - directly to the source for answers and comfort.  If they couldn't help me, no one could.  It was a very lonely and scary feeling. 

So, I emailed them again, this time starting a new thread.  My last e-mail was a response to an ongoing conversation.  Maybe it got lost in the messages.  Thirty minutes after sending the new email, her ENT called me on my cell phone.  Wow!  We talked and he was very understanding.  He asked if I could bring her to see him the next day.  He wasn't in clinic that day, but would come down whenever I got there to see her.  I felt like I took a breath for the first time in days!  I felt so much better just knowing I had backup.

I drove Harlie up to DC the next morning.  It was the Thursday before Christmas.   He came down and met us in the clinic.  He said he needed to drain it.  While waiting for the supplies to do that, he changed her trach.  When he took her trach out, he looked in the stoma and felt the bulge in her trach scar.  It deflated and went flat.  He put the new trach in.  He said it was air. Somehow, when she was coughing, there was a track for air to get stuck in the scar tissue.  So weird.  So, luckily he didn't have to drain it.  And he said she had tracheitis (the increase in orange secretions).  He put her back on Clindamycin and said she had no abscess, which was great! I was so relieved!

I took the opportunity to explain how I was feeling.  I told him that for so long, I went on my gut. But, after 12+ years and the last one and a half years of scary moments, my fears are growing.  I have so many more horrible experiences and memories that they are getting jumbled in with my gut and it is hard to tell what I'm reacting on - fear or gut?  It gets confusing.  And I can't be the mom that cried wolf.  I need her doctors to know and trust what I say.  So, I don't want to be wrong, or overreact.  But, I don't want to under react, either, and miss something that could be detrimental to Harlie.  Ugh. Some days I don't know how I live this life.

Anyway, he was very understanding and compassionate.  He said that this is her airway, so it is better to be cautious.  If this were happening on her arm or leg, I would have been WAY less concerned.  Especially with our past experiences where her airway and wound infections have put her in life threatening situations.

So, we left the hospital and happily went home.  I was feeling SO much better and was happy that I could potentially be less scared during Christmas.

Then, on December 29th, the day we had family photos scheduled, she woke up with another flare up. This time, it looked red and angry and there was a spot that looked like a pimple. Ugh! As the day went on, it got worse.  And by that night it was so unsettling!  It was almost like a blood blister, but grosser.  I'm guessing you don't want to see the photos.  Oh, the things I have to see, photograph, zoom in and study...some things just aren't right.

That night, while she slept, it opened up and drained.  It looked so much better the next day!  Now her trach scar is flat and looks way less angry.  So, I don't know what the heck that was, but it appears as though it is healing, finally!

January 30

Oh, I have tried to finish this post so many times!  I'm just going to end this here and then start another post, because, as so often is the case, the story doesn't end here. 

Thanks!
Christy