Wednesday, May 20, 2009

Another doc to add to the blog

Seriously? Like we need yet another specialist? I thought 2009 would be the first year Emma would not see an inside of an OR but I was wrong.

We had a standing appointment with the ENT since March when the 4th ear infection of the year failed to clear up. Dr.Curry made the appointment, along with a hearing test b/c she felt that some damage (a.ka. HEARING LOSS) could have resulted from the back to back to back ear infections since Christmas. Well, she was right.

Fast-Forward to this month. She started speech and OT therapy-about a year behind with all of the chit-chat. Ems drops consonants and endings on almost all of her words. It's like she doesn't hear the "end" of them (or chooses to ignore them-typical Emma fashion). Oh and no sentences yet among another things. She has a senorsy processing disorder which I am simply too exhausted to talk about right now.

But today explains a lot- mild hearing loss in at least one of the ears, if not both. The audiologist wanted to know the whole "what does she say/doesn't say/doesn't say correctly" and when you put 2 and 2 together, it makes sense now of why she says the word "HOUSE" like "HOW"....drops off the ending. Duh, she can't hear the ending. So we think. Because while Melissa was trying to admin the test, Emma was screaming so hard she puked. So lovely. Goldfish and Juice. So we got about a 80-90% accurate test. It was a rotten morning.

After this lovely ride, we got to meet with Dr.Derkay, the head of ENT at our children's hospital. He took a quick peek in her ears (as she was screaming and dry-heaving) and remarked on how strong she was....I just couldn't bear to go into the story of WHY she was that strong.
Good ear infection, just lovely seasonal allergies. Bad news.....we won a ticket to the OR come this July. He wants to examine her ears under anesthesia to really get a good look without having to torture her while she is awake. And he feels that tubes will help, tubes will go in. I don't want her in hearing aids if we can drain the fluid so she can HEAR. Good gracious does it have to be this hard??!!! We will also have a ABA test done (auditory brainstem response) to really get a accurate account of just how much (if any) of a hearing loss she may or may not have. This is the best test you can do and frankly, I can't believe we were able to get any results after how hard she cried today.

As she was crying and coughing.....he went into her whole EA/TE repair and history. He is actually more worried about the snoring and cough than the ears lol! Dr. Derkay is going to do a scope of her trachea to see if any stricturing has occurred, check to see if the trachea is growing with her and check the healing from the initial surgery. It's never been done before b/c I just accepted that she will always snore and have a scary barky cough while she sleeps. He said it's not normal at this point. Of course not right? Before he takes a looksee, I am going to have Dr.Kuhn in the OR with him since she did the first repair at birth. I always drill the docs and the anesthesiologist before anybody sticks a ET tube down her throat b/c of all that has been done. He'll scope first before placing the lovely blue tube down the hatch and Dr.Kuhn will be standing by protecting her work.

Lovely eh? Explains a lot with speech which her therapists will be delighted to hear. Looks like we meet our $5900 deductible this year after all :) I am pretty pissed, or more like annoyed or just simply exhausted of having yet another thing out of place with Emma. God is up there thinking....lets give her yet another issue to deal with and see how she swims with the fishes. Its frustrating that's all. I look around at her healthy "never has seen the inside of an OR" friends and I am still bitter about it. I thought I was over it but I am apparently not. It's hard to explain to them how I feel b/c frankly, they haven't had to say goodbye to their baby while someone else takes them away to be cut open. And on the other hand, we have friends that have gone through similar things, sometimes even more than us, and then I feel guilty bitching about a simple minor surgery. Emma has been through much much worse.

All I want to do is have a tall glass of something alcoholic and go to bed. More likely I am going to mop my kitchen floors, do an enema and go out to buy an overpriced cupcake to make me feel better.


Kristin said...

Big hugs to you, Laura (and Ems)!!! I'm so sorry that you are having to deal with yet again more issues. :( That's no fun at all! As far as the ear tubes go, they have helped Gavin immensely and it is a very simple procedure. I think they don't even have to intubate them if that's all they're doing. Gavin had general anesthesia because he had his adenoids taken out at the same time. Sometimes the breathing issues are much more scary then the poop issues, lol. Geez, when will these kiddos get a break?!

I also wanted to tell you that I am so sorry I haven't gotten back with you about the bowel management week!!! I stay so busy and time just slips away. :S I would love to go at the same time, as long as they are both pee trained at the same time. That would be awesome!! Unfortunately Gavin doesn't seem too interested yet in it, but I hope soon. :)

I have to take Gavin to the orthopedist because his feet are really bowed in AND his ankles bow in. If you watch him walk, it almost looks like it hurts. Sigh...

Anonymous said...

Why can it never just be the butt on these kids? LOL!

I'm reading this really late, but hugs to you anyways.

I have learned that docs are never impressed when kids with Esophogus issues are puking in front of them while they are worrying about strictures. Sometimes I just want to try to reason with Benji by saying something like "can't you just help mommy out for once by not puking in the clinic?" Two bad 2 year olds can't be reasoned with. Sigh.....

Lori Dennison

Bridgette and Thomas said...

It's all relative Laura, that which is simple GA and investigate the issues can be hard when it is yet ANOTHER thing done to your child, but also reasonably minor compared to the hardships and recoveries she's had already.
She will breeze thru this one Honey and will be fine.
The fact that there is something else is hard, I know that with Thomas' developmental delays with speech and play etc when we were looking at Autism Spectrum stuff, I was absolutely beside myself, distressed and anxious. He IS getting better, which of course means I am getting better.
Once you see an improvement, your way of thinking will change, your mood will lift and you will get through it!!
Will send you happy thoughts!!