Wednesday, May 12, 2010

What? What's that you say? I can't hear you.


Ah, our sweet little Jack man. We've recently learned a whole lot about him and his speech problems. Like I've said before, most of what he says is vowels and he's still super hard to understand. I get most of what he's saying, but not all of the time. At first, I was just chalking it up to him being a boy and being a late talker. Spencer was a late talker too. But when his 3rd birthday rolled around and there was still little improvement, I began to worry. I talked with his pediatrician about it at his 3 year check up and he suggested speech therapy. I inquired about a hearing test, but he said that the speech therapist would take care of that. So, off we went to Mrs. Sorenson down at Forbes (the kids' elementary school) to speech therapy. She was about half way done with her assessment when she said, "I don't even need to finish this to know that he will need extensive help." Awesome. I asked her about a hearing test. She said that it probably wouldn't work well for a child this young, but we could go ahead and try. She put the huge earphones on his head and sure enough, every time he heard the beep, he would say, "Hear that?" He would then grab the earphone on the side that he was hearing the beep. She was impressed that he went through the entire test and then concluded that his hearing was fine. So, ignorant me, went along with it and assumed that his hearing must be fine. We've been continuing on with speech therapy with slow progress. She has said on several different occassions, "It's been awhile since I've had one like this." That's never good.

Several weeks later, I was talking with a friend whose son was exhibiting similar speech patterns. She had told me all about their turn of events that lead to them finding out that he couldn't hear very well. I then decided to take it upon myself to get more extensive hearing tests done for Jack. I called an audiologist (who happened to be in the same building as our pediatrician) and set up an appointment. We went in and Jack did really well through several different tests. He was tested for nerve damage and pressure within the ear. The doctor put Jack and I in a sound proof booth (one day when I'm rich and famous I'm going to get one of those to sleep in! Holy moly! You don't realize how much white noise is going on around you until you go into one of those!) and put headphones on him and played beeps at different pitches. The result of his testing indicated that his eustachian tubes aren't properly equalizing the pressure build up in his ears. He said that his ears are constantly like ours would be if we went up a mountain or in an airplane and we couldn't get our ears to pop. He likened him learning language to someone being taught English, but every time they are taught it's by a different teacher with a different dialect (australian, english, southern, etc). He said his ears probably do shift a little bit with the pressure in turn making his hearing change constantly throughout the day. I asked him what the course of action would be to fix this problem. This is where my frustration with him began. He said, "Well, he has to learn to pop his ears." What? You want me to try to teach a 3 year old how to pop his ears? You really think that if they haven't popped on their own by now that they are even able to? Then I said, "What if he can't?" He replied, "They usually correct themselves by the time they are 8-10." Are you even remotely serious? You want me to wait for 5-7 years for this problem to correct itself? I kept on and kept on, searching for options and he kind of washed his hands of it and said that he only had a glimpse through a small window of the whole problem and that he wouldn't be able to figure out what to do with him after only being with him for a half an hour. This stupid conversation went on for about 20 minutes only to then determine that that's not his job! He does testing and hearing aids. He said that for further treatment I would need to see his pediatrician. Where was that answer 20 minutes ago?! So, off we went, up the elevator to his pediatrician. I explained the problem and they immediately referred me to an ENT who happened to be on the 3rd floor of the same building. So, back out to the elevator we went and made an appointment with them for two days later.


We met with the ENT who reviewed the previous tests done by the audiologist and ran some tests of his own. He put a device in Jack's ear that completely plugged the ear and sent some sort of shock wave or puff of air (I can't remember) into Jack's ear that would determine the station of the ear drum. The ear drum lies at the base of the ear canal and should be flat and flush. That is what they call a zero. If the ear drum bulges towards the ear canal (the outside of the head), then that indicates a build up of fluid within the inner ear and if the ear drum bulges toward the middle ear (the inside of the head), then that indicates that something is creating a vacuum within his ear. Both of Jack's ears have a vacuum effect going on. He explained that his eustachian tubes (which equalize the pressure build-up and run from the middle ear into the back of the nasal drainage system and throat) are not functioning at all. The solution? Simple. He just needs tubes put in his ears. It's a low risk surgery where they make a small slit in the ear drum and insert a tube that looks like a very small and elongated spool. Although that won't fix the problem with the eustachian tube, it will allow the pressure build up to release in his ears. The eustachain tube usually corrects itself by the time the child is 8-10 (which is what the audiologist was trying to tell me, but he was suggesting that we just wait until then. Loser.) He was explaining how simple and painless the procedure is and we were about to wrap up the appointment when I then asked him how much tonsils and adenoids play into this situation. He asked about recurring strep or other throat infections. He did have one throat infection in February that was horrible. Here's a picture of his throat. Brace yourself. It's nasty.

If you look at his infection covered tonsils, you can see that they're touching. I explained this infection to him but then also informed him that this has been an isolated incident and not a recurring problem. He said that they usually don't remove tonsils or adenoids until kids are between the ages of 4-6. That's when they usually cause the most problems. He said, "If this were my kid, I wouldn't do anything until there's a significant cause." Then he said, "Well, let me take a look at them before you leave." Jack opened his mouth and the doctor peered in and said, "That sure changes things!" I asked him what he was talking about and he said, "His tonsils are huge!" I assured him that I was well aware that they were. He said they were a Stage IV. That meant nothing to me so I asked, "Out of what?" . He said that the biggest they can get is a Stage IV. Lovely. He said, "I take it back. If this were my kid, I'd have these removed as soon as you can." Judging by the size of his tonsils he drew the assumption that his adenoids were enlarged as well. Come to find out that the adenoids sit at the base of the eustachian tubes! He said that he would put money on the fact that the oversized adenoids were probably blocking the bases of the eustachian tubes which was in turn creating the vacuum! He also said that his tonsils are so large that they are preventing his tongue from a full range of motion so that he can't even properly form words! So, not only can he not hear us very well (he likened what he hears to what you sound like if you put your hand over your mouth and talk), but he can't speak well either!

He instantly became very apologetic because he had talked up such a simple procedure to me, but with this new diagnosis, that would change. It is a much more involved surgery and the recovery would be significantly more intense. I got teary eyed and he became more and more apologetic, assuming that I was a scared mom. Of course I was nervous for the procedure, but that was not the cause for my tears. I couldn't explain to him in words how excited I was for a cause for Jack's issues and a relatively easy solution. Over this whole process I couldn't help but wonder how much of the issue with Jack was a physical problem and how much of it is mental. After the original hearing test with the speech therapist, I was led to believe that it was probably some of both. Now this doctor is telling me that it's probably all physical and it could all be fixed!! I was overcome with gratitude. I knew at that moment that our prayers had been answered and that our family fast had played a role in me becoming more proactive in this situation.

So, we have Jack scheduled for surgery on June 24th. They could have gotten us in sooner, but since the recovery is supposed to be a beast, I wanted to be able to devote my full attention to him. The last couple of weeks in May are a nightmare because of all of the year end performances at school and dance and then I have my piano recital on the 25th. The first two weeks of June all of the kids have swim lessons, so the 24th it is! I so wish I could be in his head to hear the "before" and "after". The doctor said that he should be caught up with his speech within six months! Yipee!! Please keep him in your prayers that day that everything goes well and without a hitch and that there is rapid recovery and improvement with his hearing and speech!

13 comments:

ASRussell said...

Can I just tell you that I am soooo excited for you guysjack is such a cutie pie! You brought tear to my eyes!!!

Sarah Anne said...

Sitting here trying to breathe through my tears. I am so elated for Jack and for your entire family.
What a relief to know that things are going to work out. Kudos to you for listening to your intuition and continuing to find answers. This is a perfect example of "It's your body (or your kids') don't let the doctors tell you what to do with it."
I'm not sure if you remember that Nolan had his adenoids taken out and tubes in his ears twice. Everything went incredibly smooth. The doctors do these types of procedures many times a day. The hardest part is coming out of the anesthesia.
Don't forget to videotape everything. I'd love to see and hear the befores and afters.
Love you so much!

Becca said...

Wow! Thanks for sharing this story.

It reminds me of something a friend, Laura, told me recently. Her grandfather was a heart surgeon, and his last words of advice to her before he died a few years ago: "Don't put too much trust in doctors. They're just people too. Many of them are good at their jobs, but some are not." Since then Laura has had three babies. The first had a serious birth defect, and the most recent was a difficult pregnancy. That advice from her grandfather has caused her to search out doctors that she has confidence in and advice that she feels good about.

I wonder how common it is that we get conflicting (or just bad) advice from medical professionals. Jack's story sure shows that we as parents need to be proactive and think critically about what is best for our kids.

Gigi's Thimble said...

Oh that is so exciting Emily. I didn't know you were going through all of this, but I'm so impressed that you kept asking questions (and the right ones at that). You're a great mom and I'm happy for what lies ahead for Jack. Yay!!

Celeste said...

Oh my goodness! What a good mom you are to follow the spirit and dig until you found the help Jack needs. My friend just went through this with her little 3 year 1/2 year old boy. At 3 he still wasn't speaking and out here they have free speech therapy at the elementary schools so she took him there and the first thing they do is test their hearing. Did the sound proof booth thing and sure enough, he couldn't hear out of one ear. Tubes were put in his ears and within 6 months he has made HUGE progress in his langauge. I'm so happy that you guys found the answers you needed.

Unknown said...

That is such terrific news Em! So happy that you've found out what his problem is and that there is a relatively simple solution. Michael had tubes put in his ears back in February, and I was amazed at how quickly his speech improved. It was like a light switch went on and he went from mumbling sounds to saying words clearly, especially no. Good for you for being able to recognize the spirit and following its promptings.
I just saw your comment on my blog and May is a busy time for us too but I hope we can schedule in some time to visit when the kids are out of school.
I'm working on getting invitations sent out, but I'll give you a heads up that Jacob is getting baptized on Sat. June 5th at 1 pm. If your schedule allows it, we'd love to have you there!

Staci said...

That last comment was from Staci, I was signed in under Dave's acct.

Denise said...

Oh Emily! I am so relieved you followed your promptings and now have a answers an solutions! I know exactly how you felt when the MD told you there was a physical reason for the problem. When the MD told me I needed surgery on my shoulder the first time, I started to get all weepy because the pain I felt wasn't just in my head..there was a reason and a solution! Good for you and yeah for Jack!

Keri said...

Emily...way to take matters into your own hands! Seriously, that's so great that you were able to find some answers. I'm so happy for you!!
P.S. I miss you! YOu should come to bunko(girls night) tonight. We're meeting at The Chocolate in Orem at 7pm for dessert and girl talk. :)

Heidi and Rich said...

Em, I am so happy for you. He is such a cute kid but I could tell that you were worried about the delay in his speech. Fasting and prayers do bring miracles. Isn't it weird though - Heavenly Father could have prompted you to be more proactive but He waited for you to fast and pray about it. He is so willing to help - I have to tell myself that all the time. When I was a teacher I had a little girl that could not speak (she made noises- which we now know were her attempts at speaking - she knew what she wanted to say) but she too had problems in her ears. Everyone kept saying it was because English was her second language but I kept insisting that it was more than that. Eventually she had further hearing tests done - a cochlear implant placed under the skin behind her ear and I had to use a microphone in class so she could hear me over all the other background noise. Anyways - she was able to make up for 5 years of not hearing in a few months and caught up to her peers. (Her situation is different but it goes to show that asking more questions and insisting on more tests do bring about answers.) I am so glad you have been able to find out what is going on - thanks for the pictures and explanations. I think sometimes we need an interpreter to go in with us to certain doctors visits since some of them can't talk on our level!!! Give him a hug - and I will send the pics soon!!!

Kristen said...

Not to be Debbie downer, but don't plan on his speech completely corrected that quickly. Kamryn got some bad habits and had to go to speech therapy for a long time to fix them. Jack may be different, but just so you know, it might be a little longer. You might also notice that he is sleeping better because Kamryn's enlarged adenoids and tonsils caused her to have sleep apnea and we noticed that she acted more well rested and happier. I'm so glad you finally got someone that would listen and get something going!

Laurel said...

Emily, I'm crying a little because of how hard this must have been for Jack and you and your family. It's wonderful that there is a solution and we will definitely be praying for him. Good luck with everything!

Ashly said...

That is a crazy and inspiring story. I hope everything goes smoothly with the surgery and recovery. What an amazing mom you are!