Wednesday, February 13, 2013

Azlan Baha update.

So the background of his story is he had an implant into his skull in April 2012.  He got a Strep infection at the site of the implant and was on 2 weeks of PICC line antibiotics after being admitted in Seattle for a few days and Spokane for a few days. After that he was put on oral antibiotics for 1 year as a preventative.  He did ok...we were able to use the BAHA processor for much of that time.  At some point, around the time we were in China...his head started looking infected again.  Red, swollen, sore etc.

Since then, it's been a bit of a nightmare.

Constant swelling (sometimes as high as the screw itself) and redness, drainage around the screw, soreness etc.  We have consulted with a well known infectious disease doctor who believes the original infection was never killed and is basically laying dormant. The oral antibiotics are acting as a bandaid and keeping it at bay.  However...not working that effectively at this point.

Our new pediatrician, a specialist himself, wants the screw out.  He too says this is classic for a infection at the site of an implant and really  you won't get control of it until it's out.

I was prepared for a confrontation today with the surgeon.  Simply b/c at every sign of infection we would call him and he was definitely fighting us on not wanting to remove it.

Well today he walked in with a resident doctor.  Immediately he started into his theory that this is "aha...not infection at all!" it is instead an allergic reaction.  Well we had discussed this on our own with infectious disease and b/c the screw is titanium...that's very very rare. Also..the symptoms were not consistent with allergic reaction.  Well the surgeon does NOT agree.  He said he will not remove it until infectious disease shows him a CAT scan of the infection. great. Let's get the infection into the SKULL next to the BRAIN and THEN let's do something.

Well he started washing his hands and went and got something. He told Azlan to come and I said "what are we doing?" he said "just a little steroid injection to help the reaction" uhhh. no. I stood up and said "not a chance" the site is infected and we aren't injecting ANYTHING into it without approval from infectious disease.

Bottom line is he thinks it's a total joke that it's an infection.  No way.  He said we are to end the antibiotics now b/c they are doing nothing b/c it's simply not an infection.  Yes. We are serious. The only way to avoid that injection was to say ... I bet you that the infection will go crazy off the meds. He confidently disagreed.

He said "Azlan is 1 in 100,000" so I asked if he's seen this at all in all his years and he said "NO". Ok. Good starting point. So...we are going to go with with the infectious doctors say.  He would laugh.  Yah. That's about the atmosphere of the room.  I'm glad I held my ground~and it wasn't that easy seeing he was laughing, telling me we were way off...there is no way...no no no this is classic allergic reaction...and on it went.

On top of everything...when I said "my gut is not agreeing with you" he laughed and said "really?" and I said ..."Ohhhh really. After 6 years of fighting for his care...what's proven to be the most trust worthy thing...is my gut feeling. This doesn't add up. It cultured a STREP infection in the beginning so we KNOW it was an infection..."

We have a lot going on right now. We are very concerned that it will get out of control and we'll be on the road in Seattle this weekend. However...there are worse places to be.

That is how our appt went in Spokane.

However...making every trek fun for the family we had a fun lunch and Krispy Kremes for the ride home.

Ahhhhhh.

6 comments:

  1. oh :( i feel sick for you. what a horrible doctor. i am so impressed that you stood your ground! i had an awful experience with a doctor when i was 13, she made me feel like such a moron for something i said, and now - 17 years later, yikes! - i always feel afraid to speak up when i disagree with them. you are awesome.

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  2. ps - praying for you, and for azlan!

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  3. I echo Janelle's comments... Praying things turn around for you and that the doctor has a change of mind... or that you can have a change IN doctor! Azlan is such a trooper... just like his mama.

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  4. He reallllllly doesn't want to remove it. Perhaps then he has to say "I had to remove one once..." I don't know. Well with 2 specialists much wiser than I saying "GET IT OUT" we can indeed find another doctor to remove it though not our first choice. Feels unwise quitting the meds b/c our doc told us the infection will take over but....it may be the only way to see what's really happening. Or PROVE it anyway :(

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  5. Go with your gut! Poor Azlan. Praying for you all.

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  6. UGH< so frustrating!!! How terrible for your little boy to go through. I am so happy you stood your ground. So sorry..

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