We spent a week with Josh admitted to the hospital. So what did we learn?
Josh's cultures did not grow anything unusual or concerning.
Josh's lungs look ok- no pneumonia this time.
Josh does have polyps in his sinuses, but they are not too severe yet. One in his left cheek sinus is the worst and we should schedule a surgery to remove it before winter, but not now.
His trachea looks good, no breakdown or scar tissue buildup.
Josh has grown so much that it was time for a new trach tube size for him, so he now wears a Bivona 6.0 cuffed TTS (tight to shaft) trach.
Since we were scheduled to see an oncologist for screening for tumors of neural crest origin this week and couldn't make it due to the hospitalization, that doctor came to order the tests at the hospital.
We also saw the neurologist who we planned to see again next month. Dr. Tomasovic said he would dictate a note for his records and we could just see him again next year. He did not want to order any new medications at this time.
The cardiologist also came by and reviewed his tests and monitors. She said nothing looked alarming to her.
So we ran out of this to check or treat, so they let us go home
We are just glad to be back. Hopefully, whatever was causing him to de sat and have extra high co2 is going away on its own. If not, we will have to call and sere if the dr can figure anything else to try or test for.
1 comment:
Hi Josh and family,
I'm a producer at Mystery Diagnosis, a documentary series now entering its tenth season on the Discovery Health Network, and we've been hoping to feature a ROHHAD case on the show for awhile. I'd love the opportunity to speak to you about Josh's case. Please drop a line, if you're interested, at rubincadrain@trueentertainment.net. I'm looking forward to learning more about ROHHAD and your own road to diagnosis!
All the best,
Leah
P.S. You'll notice that we don't actually keep a blog on the blogger site - we started the account so that we could reach out to you and others in the ROHHAD community. Please don't take our non-blog presence to mean that we don't actually exist : )
Post a Comment