Update

Ok I know it's been awhile... I'm sorry.  Here's what's been going on.  Last week, Tripp started breathing bad.  We changed out his trach several times, but nothing helped.  When we suctioned and suctioned and weren't getting much.  So I called and got an appointment with the ENT.  She looked down his trach and said his secretions were so thick that she could hardly even see the sore underneath.  She said she thought that he had an upper respiratory infection and wanted to start him on antibiotics and then go back up to the higher dose of steroids and taper back down.  I wasn't crazy about starting the antibiotics because he never does well on them.  But by the way he was breathing, I said okay.

So he started on antibiotics that he was supposed to be on for 10 days.  Well after the 2nd day, he started with massive diarrhea.  I immediately stopped the antibiotic and called the pediatrician.  I gave him pedialyte and rice cereal. The diarrhea lasted about 5 days (therefore he got almost NO calories for that time)... and it just stopped "somewhat" yesterday.  It was EXHAUSTING.  I must have changed his diaper every 5-10 minutes for a good two days.  We could barley keep up with diapers.  And my poor baby... his bottom is already raw, so any little amount of poo-poo burned him immediately.  And this just made his bottom even worse.

But the worst part is that I think just going up on the steroids helped his breathing, so he really probably didn't even need the antibiotics.  He had a horrible week for nothing!  But, o well.  We had to at least try.  His breathing got better within 2 days on the high dose of steroids, so I'm guessing that maybe his sore under his trach was getting bigger and needed some shrinking down.

So as of today, the diarrhea is better and the breathing has good days and bad.  The last few nights haven't been great, so I am exhausted and honestly just in a really bad FUNK.  I apologize.  I will try and update again as soon as I can.  I love you all and thanks for all the support!  We truly need it!

Love,