Tuesday, February 3, 2009

Today's happenings

So, today I took Grady to the pulmonologist to see if she would clear him for getting tubes in his ears. Since he's got such a history in the respiratory department and since the tubes require anesthesia then she has to give the ok before he goes under.
Anyway, he's sounding much better and she was pleased. She ordered a chest xray since she hadn't seen one since August. It wasn't as good as she was hoping. She won't clear him until at least 3 weeks from now. We go back in 3 weeks (Feb 25) to get another xray and hope that what she's seeing in his lungs is cleared up. She started him on zpack antibiotics in hopes of clearing up his chest. I think we'll stop the augmentin that the ENT started him on (waiting on confirmation of this from ENT) and do the 5 days of zpack and then start the augmentin again (the augmentin is to keep the ear infections away until he can get the tubes) She said she feels that the chest xray is showing the end of some sort of viral something (which we're all getting over) but she's not comfortable saying he can do the anesthesia just yet. I'm disappointed because I wanted to get this stuff over with. But, I'm glad she's taking good care of him. I have to just have faith that this is God's way of telling us that it's not the perfect time for Grady to get the tubes yet.
The dr. also brought Cystic Fibrosis back up. She's concerned because Grady hasn't gained weight (8 oz since August) Although he's a tiny bit taller and he's started walking since then. He is skinny but he does eat a lot. She also said since Ryan is so thin Grady may just be thin. She thinks he poops too much too. But then she said since we've had the CF test and he's not presenting AT ALL like a CF kid (poop isn't horribly foul smelling, no rigid muscles, no salt taste on skin, etc) then she's not really too concerned.
Then she mentioned some sort of rare cilia disorder where the cilia don't move like they should. She said we'd have to biopsy the cilia. If it is this disorder then he'd get chest therapy and daily antibiotics, etc. She also doesn't really feel it's this. She said this disorder is even more rare than CF. She said we'll keep it in the back of our minds.
So, for now, we're continuing (a different) antibiotic, continuing Flovent inhaled steroid, doing albuterol as needed, trying to get extra calories in him and bring him back in 3 weeks for another chest xray.
I wish she hadn't even brought up the CF and the cilia disorder! I don't, in my heart, think he's got either of these but it doesn't help to have it in my mind! Praying that his chest clears and we can get the tubes put in and start moving ahead!
Now, off to take Taylor to the pediatrician for this cough she's had for weeks that comes and goes. It's back now with renewed strength it seems! She's coughing til she pukes and busting capillaries in her little cheeks because of coughing so hard! Hoping the drive to and from the dr. is quick and smooth (roads are bad!) and that he can give us some answers

1 comment:

Finding Normal said...

Hope your ped appt went well. Noah's got that barky cough too. Off and on forever. About the time I'm ready to call ped, it clears up again, only to reappear a few weeks later. Bizarre!