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Thursday, October 09, 2008

So much to catch up on, so little time

Ahoy thar me harties!

Can you tell who I have been spending a lot of time with?  Ellie loves it when she plays that song on her Wiggles guitar and we go along.  

Ellie has been home today because of her surgery yesterday. Who ever said there are no side effects to ear tubes got that dead wrong. Just like ALL other child medicine decisions there are crappy trade offs. CRAPPY. We had ear tubes placed when Ellie was 18 months due to chronic ear infections. I think her mild hearing loss is due to those infections. So we had to do it. I do believe we made the right choice. 

Fast forward to 4 years plus later - (sorry not in the mood to do the math) and we get to learn about yet another medical condition - Cholesteatoma. Where the pocket left by the long since fallen out ear tube has become an area of negative pressure and is creating a keratin build up in her ear (basically dead tissue) which becomes a tumor of sorts that will eventually grow to a size that can destroy those three lovely little delicate ear bones that allow us to hear. Great. 

Hence yesterday's surgery to remove the Cholesteatoma which is a very involved thing because they have to remove the keratin build up -which is simple - but then cut a little bit of cartilage from her ear and put it where the negative pressure pocket is - like a little wall that will stay straight versus concave and keep dead cells from building up again - roughly a 2-3 hour surgery.

Her G.I. doctor, whom I adore for the record, jumped in on this and scheduled an endoscopy too. He has wanted to do this for some time, but I have been holding it off because you have to go under general anesthesia to do it, and general anesthesia, as well as elective surgeries are two things we scrupulously avoid.

Yesterday was the day. We went in at 10 and Ellie was prepped with us. She was starting to get upset by 11am because she was hungry and because she understands almost everything that a normal 5 year old would and she knew something was coming. I was very pleased when the anesthesiologist asked if he could give her some Versed through her g-tube to help her relax and not be traumatized by the mask they would put over her face to put her out. With in 10 minutes of getting the Versed, Ellie was smiling and would allow us to put her on the bed and she had a lovely stretch. Cute in a weird, this is wrong, kinda way seeing your 5 year old on drugs. But she's a happy drunk. I was glad that she was relaxed going into the operating room.  I walked her to the door of it, as far as they would let me go.  Ellie was sleepy at this point, and I kissed her and they wheeled her in. After the door closed behind her I burst into tears. I felt out of practice. Things have been going so well. I still, like any parent, HATE seeing my kid being wheeled on a gurney to the operating room. It's an awful, horrible pain in the heart.

I went back to Dave who was gathering up all our stuff (Ellie's stroller, toys, clothes, etc.) and I was still crying but trying to hold it in. It wasn't like I was wailing or anything, just looking hard at the floor and I could feel the blood in my face and the tears were streaming. A really nice nurse closed the curtains and I took a minute to get it together.

We went to the waiting area and  - waited. That wait. It's a particular kind of waiting I will never, ever miss if I never have to do it again. Every time the nurse would come out all the other parents would look up hopeful and fearful at the same time for news.

Then, abruptly, 45 minutes in, Ellie's ENT surgeon came out. Dr. Trevor McGill. He's from Ireland and has a Dublin accent. He's older, gray haired but spry and energetic. He looks 10 years younger in his scrubs and cartoon character surgical cap than he does in his street garb, which frankly is rather Irish priest-like gear. But he comes out with a picture of Ellie's inner ear.  They had removed the Keratin to find that the pocket of negative pressure left from the initial ear tubes was not as concave / deep as they feared. His proposal was, instead of doing the full on Cholesteatoma, which is a 6-8 week recovery time, they would instead place a new ear tube next to the pocket which would even out the pressure and basically buy Ellie some growing time. The theory being that adults don't get Cholesteatomas...

After a short discussion, because we were very conscious that while we were discussing, Ellie was unconscious on the table, we signed the consent form to do this. However, writing this now I almost wish we had said no. No to both the  Cholesteatoma surgery and the new tube placement. No because if the Cholesteatoma has not gotten any worse - maybe it never would have gotten worse. No because what if when the new tube falls out the same damn thing happens? No because - it just sucks to have to make these crappy, invasive, put silicon tubes in my daughter's head choices....

I hope we did the right thing. I really do. But that's the thing about being a parent in this situation, I at least, am not 100 percent sure, 100 percent of the time that the choices I have made are the absolute best that I could have for Ellie. And that is with trying my hardest and doing my homework. It's just the awful nature of it.

The good news is that her recovery time is much less and the whole tumor growing in her ear is gone. 

About 45 minutes later the G.I. surgeon came out to give us the news of Ellie's endoscopy. An endoscopy in this case is when they put a scope (small camera) down Ellie's esophagus into her stomach and into the first part of her intestines to take a look as well as some tissue samples. The really good news here is that Dr. Fox, head of GI at Children's Hospital Boston, said that he didn't see any irritation. That her whole tract  as far has he could see looked great. Better than most peoples'. To all the doctors who have scoffed at her diet and even to my GI doc whom I really like but has still been so worried that Ellie's esophagus was rotting away because we never got her the Nissen Fundoplication - I really do have to take a entirely, smug, poor form human moment and shout     HA! 

I also, when I get off my scales of justice have to think it is the Slippery Elm - that no one seems to understand but the herbal folks and health food store junkies. Slippery Elm has to have been the thing that has helped Ellie's digestive track heal and be healthy. That and her no sugar, low acid, food combining diet. It's all working - really well. So HA HA HA!

OK - yep rather a few human moments there. 

The great thing was too that instead of having to stay over night on serious pain meds Ellie got to go home with us. Today she wanted to watch videos and snuggle and was tired but kept all her food down and wanted to play. We have been controlling the pain with Tylenol and she has been a pretty happy, if not tired, little cutie pie.

I am almost done grading papers etc. and I need to post pictures of Ellie belly. She is now 36 pounds! 36. I can't believe it. She is growing and there is so much of her to hug these days. And when she is not having to deal with surgeries she is doing great. We have come a long, long way and I am thankful. There's nothing like seeing your kid wheeled into the operating room to make you feel 1,000 times more grateful for their existence in your life than you were before - even if it's hard to believe that is possible.

1 comment:

Bird said...

My college roommate never had tubes placed, but she did develop Clesteotoma, which caused permanent hearing loss. Actually, I've never heard anyone associate tubes with clesteotoma. Interesting.

I completely agree with you on the slippery elm. You recommended it here and we ordered some. Nothing does a better job of soothing Charlie's esophagus. Kudos to you for skipping the whole fundo--I think they suck.