Casey had tubes put in her ears a little over a year ago (10/17/06). When we had this done we were told that they would work their way out over the next 9-12 months. We were also told that some children need to have them redone. Casey did not seem to have ear pain, they just found fluid in her ears when we were getting audiology test done. Last year it was really no big deal.

About 2 months ago we went in for follow up audiology tests. During these tests we were told that her tubes were out of the drum and just sitting in her canal. They said they saw more fluid and suggested we have the tubes redone. When we went in to see ENT about the tubes this time was a bit more concerning. Instead of just seeing the fluid they told us that the left ear drum appeared to be caving in. Our original ENT was out on maternity leave so we saw a non pediatric ENT that was covering for her. After we waited more than 2 hours to see him (with an appointment) he spent a total of maybe 3 minutes in the room. He said Casey needed the tubes redone and that her left ear drum was very bad and that we would very likely need to have ear drum reconstructive surgery to fix it.

Many doctors check Casey’s ears and I was shocked by the new ENT’s suggestions. I tried to get answers as to what happened, how to prevent it from happening to the other ear, etc. The doctor was very rude. He was rushing out of the room and just did not give me answers at all. When I got home I told Tim and we decided that we needed a second opinion. And, this opinion needed to be with a pediatric ENT. I called Children’s Hospital and got us in with a pediatric ENT over there.

The new ENT group was so much better. They spent all the time we needed answering questions and going over how things work. They said that Casey’s ear drum was in fact caving in, but that they would never recommend a reconstructive surgery for a child. They said that it was fairly common for children and that normally placing a tube in the drum will correct the issue. We were able to get them to do the tubes while we were there for Casey’s foot surgery. It worked out great. She only had to have 1 anaesthesia and both procedures.

We went for the ENT follow up this morning. Everything looks good. The doctor said that when she got in there Casey had a lot of fluid and infection in both ears. She also said both drums were caving in. She said that after placing the tubes that both drums look good. They used a special pressurized tube that helps keep things healthy. We will go back in 3 months for them to keep an eye on them.

Casey has a VERY high pallet, nearly a cleft pallet. The ENT said that it is common for cleft patients to have the same problem that Casey is having. The positioning of the ear and all of it’s parts is affected by the width and position of the pallet. Many cleft patients have to get the tubes redone every time they come out. At this point they are going to keep an eye on Casey’s tubes and ear drum. They are hoping as she grows that her pallet will strengthen and that she will not need to continually get her ear tubes redone.

It’s so amazing at how differently doctors approach things. Last year we had the tubes done and they never mentioned the ear drums being at risk, nor did they say anything about the pallet. They had us come back at 6 months to just check on the tubes. At the 6 month appointment they pretty much washed their hands. They said to call if we thought she needed to have them redone, but they did not suggest any further treatment. Now this time around they have explained things much better. In addition they want to closely follow Casey until they are sure she is out of risk for ear drum damage.

Long story short, if you have a kid (especially a special needs child) be sure the doctors are specifically pediatric. It makes such a big difference.

On a separate note…

I don’t have pictures or details yet, but I heard the Spa party in Austin this weekend was a lot fun. Thanks again for everyone who participated.

This entry was posted in Casey.