Wednesday, June 13, 2012

I have no news...good news...and bad news. Which would you like first?

How about we get the bad news over with. Today, Gavin and I met with the ENT to discuss his X-Ray, his apnea and his other issues. I hadn't seen the X-Ray yet, but could tell by the doctor's expression when he pulled it up on the computer that it couldn't be good. He turned the screen towards me and my heart dropped.

I'm not sure if you know what you're looking at...so I'll try my best to describe things to you. I wish I could draw arrows on this photo - but I couldn't figure that out! First - look at his mouth area. All the white areas are bone and teeth. See the big molars on the bottom? They're his adult teeth waiting to emerge! Pretty neat, eh? Once you eye the molar on the bottom right - look a little further to the right at that black dot with light typing next to it. That is an enlarged adenoid...which is an issue. Go back to that molar and look below (and above) it. We've always known that Gavin has a narrow windpipe - and his low tone causes it to collapse pretty easily, which is why he is so high risk under anesthesia. But what was so concerning is that there was not a clearly visible path from his windpipe to his nose. It looks occluded! It's amazing he can even breathe at all.

The doctor looked in his mouth and told me his tonsils are fine - they shrunk since the last time they were checked - so that's one issue off the table. He also tried to get a look into his ears with no luck. Some of the best doctors around have a hard time seeing in his ear canals. Gavin has some unique peculiarities in his anatomy - his ear canals are shaped in such a way that makes it difficult to see with an otoscope. So he decided to have one of the audiologist do what's called a Tympanogram. She places a little rubber tube in each ear and blows a puff of air inside to test eardrum movement. If the results look like this...

...it's not good news. This is what Gavin's results looked like in both ears, indicating that he had fluid built up which could lead to more infections. But what the audiologist said next had me crying all the way home. She asked if Gavin has been pulling at his ears or cranky or seeming to be uncomfortable. I said no. She told me that he's probably "used to feeling this way" - used to hearing like he's under water - which means this has been going on longer than anyone knew.

*gulp*

This crushed me. There was no way I could have known he had fluid in his ears...or had pain...or any of it - because he never complains! And he can't tell me!! It was only three or so months ago that he first started getting sick - fever upon fever - and we discovered his first ear infection. To think he's been struggling longer just breaks my heart.

Gavin and I went back to meet with the doctor again with the results from the Tympanogram. He asked me the loaded question: "What do you want to do?" It was very difficult to answer. Gavin's sleep apnea is scary-bad. And I worry that this sleep apnea could lead to other health issues. The doctor told me that removing his adenoids and putting tubes in his ears will help. But then there's that pesky "high risk" under anesthesia that causes everyone (including me) to think more conservatively. It's a big catch 22.

In the end, we decided to give Gavin four more weeks before we make a decision. He will stay on Flonase, which might help. And the doctor said that sometimes Summertime and Mother Nature helps dry things up as well. On July 13th, we will go back and get repeat Tympanograms. If the results are the same (or if things get worse before the 13th!) we will go right into surgery. I want it all taken care of before Gavin starts school in the Fall.

Being Gavin's Mommy is not easy. There are so many uniquely shaped puzzle pieces...and odd scenarios...and unusual complications. The worst part is not knowing, really, what he's going through. What he's feeling and thinking. My greatest wish is for him to talk. Please God...give him his voice!

I'm not sure where it came from -why that word in particular - but who cares! I thought it was so cool!!

And so did he. He was very, very proud of himself...as you can see.

And finally. The NO news. Which means no news yet - no positive pregnancy test yet. I swear I see shadows on the tests...but I won't be cautiously optimistic until the line is visible without me having to stand in the closet holding it sideways with my head to the side and my left arm in the air.

2 comments:

Hi Kate!My littlest had the same flat line, I felt the same way- she had delayed speech because of a 40% hearing loss for the first 18 months of her life due to fluid buildup that was undiagnosed. She has a very narrow ear canal,so the dr's didn't see the fluid, and she never got infections, so it went unknown. I refused to believe that nothing was wrong and pushed for some answers when she wasn't even babbling at 18 months. Anyway- the day the audiologist found the fluid buildup she recommended a ENT visit, which would have ended up in tubes, except that I had the luck of having a speech pathology appointment the same day. The speech path looked at her behavior ( things I thought were just typical for her, that turned out to be symptoms of an illness- talk about feeling like a bad mom!) and thought it was all explained by acid reflux.This was causing the fluid in her ears, the speech delay, interrupted sleep, separation anxiety, moodiness and apnea. We started her on zantac, and the change was almost immediate. Obviously, there is no one answer for every child,I know you look in to every possibility before treating Gavin- but just wanted to let you know what helped us and let your readers know this is a possibility. People still look at me like I'm nuts " She had reflux, so she couldn't talk???" Yep, it's possible! ~ps momma sawalve

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can write a check made out to CCIU and mail it to: Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!