Thursday, October 24, 2013

Time to bring in the big guns

The week has been a bit of a roller coaster. I gave Jax a half dose of his Prednisolone (liquid steroid) on Monday night to wean him down, and by Tuesday afternoon, the school nurse called me to pick him up. He was having asthma that she didn't feel was controlled, so I picked him up and headed straight to the doctor before Brady was home.

The doctor said she could hear wheezing in his lungs (about 2 hrs after his inhaler) and he wasn't ready to wean off the steroids. So, he was put back on the full doses with the plan for a follow up on Friday. I gave him a full dose that night and he was doing great on Wednesday. He had a class trip out to a farm that day, so the teachers kept a close eye on him. Sure enough, I was called just before 3pm to let me know they had to give him a dose of Albuterol (even though it was only 3 hrs since I gave him some). Then I was called 15 minutes later by the teacher saying she wasn't comfortable putting him on the bus, so I ran and got both boys. The teachers and aide said he was great through the farm, but noticed he got quiet on the short bus ride back to school and then he started his symptoms (red cheeks, short of breath when talking, less energy).

Our pediatrician called me that night to talk about what was going on. I said he was stable and I was comfortable waiting to see her until Friday (I have a pulse ox monitor at home). She has decided that Jax needs to start seeing a specialist to try and control this. We just can not go through this winter with so much missed school, activities, events and of course, it's not safe to keep pumping Jax full of so many steroids, that aren't really working! I feel so bad for him.

Jax will see the Allergy/Immunologist that I actually saw this past summer (he did his residency at Childrens Hospital) and hopefully he can find the right preventative medications to help Jax from going down these dangerous roads! Our pediatrician works with him often, so she said she'll have a full phone conference with him before our appointment (Nov 11).
Hopefully the pediatrician will clear Jax tomorrow to start weaning off this high dose of Prednisolone!

In Brady-news, he's been working SO hard on new sounds and words with his therapist. She emailed us and said he's doing really great with these words:
my
mom
dad
school
house
more
mess

They are currently working on these three words:
me
money
scary (holiday theme)

He is cruising along so much faster than he was last year. Last year he had to have his IEP goals changed when they realized he couldn't work on words, but rather only sounds. His IEP goals this year is 15 words, and he's got 7 already! The therapist is over the moon!
I can't wait for him to master his m-sounds and move to 'B' some day. I smile thinking of him being able to say his NAME some day :)


The boys didn't have school today, so we spent a few hours down in the playroom (away from technology) and built a new train route. *I* kinda want more tracks to really pimp it out!

1 comment:

Michele said...

Asthma is a lousy disease. I'm so sorry he's struggling with it this year. Mine is too - we saw an allergist last week and started a new preventive inhaler. I hope your visit to the allergist goes well!