Crazy Times

It is not my intent to neglect this space, but life keeps intervening.

Work has been busy, with fall kicking things into high gear.  Between routine meetings, two different Bible Studies, and funerals, I feel good if I manage to keep track of the days of the week.  I'm thankful to have a secretary who knows my schedule and reminds me of upcoming events.  She helps me stay ahead of the game.

We've also been doctoring Jason again....trying to figure out exactly what to do about the MRI-revealed significant (and chronic) congestion that has affected his sinuses and, as it seems to be causing the fluid in his ears, also his hearing.  Our local ENT recommended another set of ear tubes and an antihistamine. 

Neurologist gave us a strong and definite "NO" on the antihistamine, because, "it can lower his seizure threshold."  So we sought an allergist's opinion about the congestion.  Despite the fact that all allergy tests were negative (and they tested for 45 (?) potential allergens), he prescribed two different nasal sprays to help with the symptom.  He also told us that it's possible for tonsils and adenoids to grow back, and after sticking a camera tube up my son's nose and into his throat, said that there were 'little flaps' where the adenoids would have been. 

OH, and we had to take everything soft (except bedding) out of Jason's bedroom, to try and prevent indoor allergens from getting in there.  We stripped the room of curtains, took down his baptismal quilt (which has hung in his room since he received it), removed all stuffed animals, and put the rocking chair  in the living room.  We also, again per the allergist's advice, purchased an air purifier.  His mattress and pillows are now encased in bags designed to keep out allergens.

Three weeks later, at the follow-up appointment, he says that there is "some improvement" but that it will take months to see a significant change.  He also said that there is 60% regrowth of the adenoids (which is very different from what he told us at our earlier appointment, when he mentioned the flaps) and that is adding to his loud breathing.  At this point, I'm feeling like the allergist is throwing medication at symptoms without real cause.

Neurologist recommended a pulmonologist but, after speaking with that department of UPMC Children's Hospital, another ENT seems to be what we need.  Since the fluid in Jason's ears has caused significant hearing issues (up to 40% loss at some pitches in one ear, 35% in the other), it's looking like we're going to need another set of tubes.  And I refuse to return to the local doctor who (1) wanted to put another set of tubes in without determining the cause of the fluid--despite my repeated questions about it and (2) was irresponsible and/or uneducated enough to not know that antihistamines are contra-indicated in a seizure patient--again, despite my repeated questioning of the advice.

I'm hoping and praying that an ENT who specializes in pediatric patients will be more willing to listen to my concerns.  It is very possible that the nasal sprays are needed to help with the congestion.  It's also possible that ear tubes will add to that help.  Maybe Jason's just a kid who will need several sets of ear tubes and/or other medical intervention before his body matures enough for the chronic congestion to clear.  Or maybe there's some cause that we haven't found yet. 

I don't know.  I do know, though, that it's worrisome!

As I said on Facebook the other day, "This parenting gig isn't for wimps!"