Sep 16, 2010

Still sick

Last Friday we went to the Doctor who sent us to the ER for chest xrays.  Sent us home with meds. 

Since then, baby is doing better but not well.  He keeps running a small fever.  He has a horrible cough.  He is having a difficult time breathing at night - the mucus collects and he chokes.  It can't go up or down, just stuck in his airway.  This happens several times a night.  It scares him (and me) and then he is awake for a while screaming mad/scared.  Repeat.  Exhausting. 

What's cool, though .. is that he is able to cough!  That's huge.  During the day especially he can get that gunk up and it won't settle as pneumonia. 

This morning we went to the Pulmonologist and he gave him yet another medicine to help open his airways.  But said he still doesn't have pneumonia!  Yippee!! 

I asked him about the sleep study (up until now, I've only heard the nurse's interpretation of it) and he said, "Normal.  Well, not normal.  But for a baby as floppy as he is, this is IMPRESSIVELY normal.  Way better than we would have expected!" 

He also wants the baby to have a genetic test done.  He sees some facial characteristics that might show what he has.  He wants the Pediatrician to do it since I see her more often and have a great relationship with her.  I won't tell you what he is suspecting, but let's just say if so, it's a dramatically different outcome of prognosis than the one he has now.  He is in complete agreement that we NEED to know what he has since it impacts treatment plans.  He also suggested a geneticist. 

So ... tomorrow I see Dr. Baldwin (our Pediatrician) and we will be discussing all this. 

In the meantime, Dan has been hit hard by what we are guessing is allergies.  He sounds horrible.  Sore throat, bad cough.  He's exhausted.  He's been sleeping in the guest room for over a week now since the baby is waking up so much (no need for us to both be zombies). 

And with Jacob - the Nephrologist ordered 3 more type of tests before we see him.  I think we'll have the results of those tomorrow as well.  The great news is that he feels Jacob CAN wait until October for the appointment.  That's great because the Pediatrician thought this was too serious to wait that long.  So I'll take any bit of good news I can get. 

1 comment:

  1. Hi!
    I stop by here often but have not posted in awhile...I am SO praying for a difinitive diagnosis that is treatable!!!!!! Oh that would be amazing...
    Hang in there!