January 21, 2011

Ears, Nose, and Eyes - We've got a Plan.

I had been counting down the days to today's ENT appointment, which had been rescheduled due to last week's snow. After 3 hours, we came away with lots of information and thankfully a plan.

First we saw the audiologist, who determined that Chase's ears are full of fluid - both tympanograms were flat. Next, we tried a hearing test, but Chase didn't respond to much at all. He could hear the sounds when they were turned up very loud, and he could hear the high frequency sounds, but otherwise he was fairly nonresponsive. As a result, they tried another type of hearing test that delivered the sounds directly into the ear and bypassed the fluid - Chase did very well with this test, showing that the hearing loss was simply a result of the fluid and not a permanent problem. Nonetheless, it's hard to hear that our little boy is having such awful hearing problems, obviously complicating all the work we're doing with speech therapy, etc.

Our next visit was down the hall (in the same practice) to the ENT. Because Chase's ear canals are especially tiny and curvy - even for a child with Down syndrome - we always resort to using the microscope as no one can ever see into Chase's ears. A quick look showed not only that Chase had tons of wax and fluid, but that he also had ear infections in both ears! Poor guy! We had taken him to the pediatrician four days ago, but they did not notice an ear infection because the pediatrician's office does not use microscopes for the ears.

For the ear infection, Chase is taking antibiotics once again - this is the fourth course of antibiotics in the past 18 weeks (sigh) but the ENT said that there is not an issue of Chase building up a tolerance to it because we are using a different antibiotic each time. On top of antibiotics, Chase is already taking Singulair for the congestion, Nystatin for the thrush caused by the last course of antibiotics, nasal steroids and saline for the nose, Florastor to prevent the antibiotics from removing all the good bacteria from Chase's body, and the Nexium for the reflux.

So what is the plan? We will definitely go forward with the tear duct surgery (opening and expanding the tear duct). At our pre-op appointment with the ENT in three weeks, we will recheck the hearing and fluid issues. If there is still a big problem, we will plan on tubes being placed during the tear duct surgery. If there has been improvement, the ENT will still be at the tear duct surgery but will just drain the fluid in the ears. (Chase's ear canals are so tiny that tubes may not even fit - so the dr. wants to wait to put in tubes if there is enough improvement.) Additionally, while Chase is under anesthesia, the ENT will take a look at his adenoids and will probably remove a portion of them in order to help with the constant congestion. It has been four months of constant congestion for Chase, so I am hoping this will be the fix he needs.

After the surgery, we will repeat a sleep study to see if Chase's sleep apnea has gotten better or worse. If it is worse, we will take the tonsils out as well.

As worn out and frustrated as I feel from dealing with four months of a sick child without being able to alleviate the problems, I truly do feel blessed .... We have so many friends whose little ones are dealing with leukemia, severe seizure disorders, heart problems, and feeding tubes - God has graciously blessed Chase beyond measure. Despite all of the issues he has been dealing with, Chase has delighted us with his humor, his smiles, and his love. What an amazing little boy!


  1. You are all in my thoughts and prayers Mer. I am so thankful that you have a plan of action for Chase and will pray that all goes to plan and that he can soon hear without difficulty!

  2. I admire people like you who manage to conquer trials. Your child is very lucky to have you. God is always with you.

  3. I hope he heals quickly! That is a lot of drugs to be on! We can barely handle getting Sweet Pea her nexium once a day. You are an amazing mom and Chase is an amazing boy!