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1000 Views 48 Replies 42 Participants Last post by  karl_996
F*ck. This is one of the longest days I have ever had. I just got back from Children's Hospital in DC, again. I left at 4pm got home at 4am. *

The obligatory background, Christian's minor ear surgery on Oct. 29th came with some sort of infection. He was on what they call a prphylactic antibiotic. (you know, so he wouldn't get pregnant right after the surgery har har)

Well, two days later he got a nasty infection in the operation ear. Two Months(!) later he still has said infection. In between he has been on Biaxin, Cefzil, Omnicef twice and Cipro HC twice. In fact he's still on the Cipro.*

Yesterday he complained about ear pain, and then his eardrum ruptured, and his head became some sort of nickelodian prop spewing stuff I shall never describe out his ear in alarming quantities.

He's had a fucking ear infection for TWO MONTHS! So I take him to Children's ER (a two hour drive) calling his numerous doctors en route. We get there and are triaged promptly, then we proceed to sit in the waiting room for six hours. I never saw so many terribly sick and injured babies in my life. :(

My son at this point is pallid to the point of scaring me, his ear is disgusting, and his little cute personality is still hanging in there. Every kid or dingy gritty adult that came by Christian would hop up and offer them his seat, or his toys. Little sweetie. Anyhow.

When we finally got to see a doctor, nobody knew what to do, including the ENT specialists, who keep calling more and more senior doctors (his surgeon, who rules, is still on vac. until the 6th from what I understand, but she's coming back so she can come in tomorrow for my guy)

They finally managed to vaccuum his ear out enough to see his infection isn't what it seems, it's an aggressive cholesteatoma that has gotten so large it pushed out his eardrum, and is probably stuck to virtually the entire middle ear.

Unfortunately it came bundled with an infection that appears to be incurable, and the infection + antibiotics have left him very very anemic and fragile. So while he needs immediate surgery, he can't have it until they get the infection under control, and him in good enough shape to survive the surgery. So they'll pound him with more antibiotics, while at the same time treat him for the antibiotics abuse of his immune system...and of course in the meantime the tumor grows at it's normal rate of exponentially. :confused

I can't sleep. I am afraid for him, dreading the surgery and the fucking million things that can go wrong, and the fact that everything going right with this next surgery means he loses his right eardrum, bones of the middle ear, and with it his hearing and balance for a year, until he's healed enough for prosthetic bones. All the things I expected but was spared from last December come home to roost. I'm not lucky now.


Thanks for reading my long assed vent. This will be surgery #4 for these damned spontaneous ear tumors.

I promised him I'd do everything I could to help him get better. Little did I know it would be so hard just to get the people who can help him to just listen, and trust me when I say "something isn't right". But I understand they can't go on parental instincts alone, because often parents are total hysterics.
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I dunno what to say :(
:( We'll be praying for him. :(
You know we are all here for you girl....I'm pray in for you all.

Is he still in the hospital?
I'm sorry babe. That's awful. No kid deserves shit like that, and I'm sorry he has to deal with it, muchless the stress it causes you.

He'll be okay. You'll be okay. This is just one of those trying times that makes you feel helpless and frustrated, right? It is.

Put one foot in front of the other, one day at a time. You'll both come out on the other side eventually. Dig deep, and be strong for him, he needs you.
:( :( :(
Hospitals are so draining and this experience must be terrible Excessa, I'm so sorry. Hang in there, Christian will be okay. We are here for you. :2pray
Excessa --

I can only imagine what you are feeling as a parent. Christian is a very lucky person to have a mom as good and as in tune with him as you are.

You and he will pull this one off, I'm sure.
I pray for the best
Often times the hardest part is getting them to listen long enough to find the problem. At least you are at a point where you can move ahead. That is a good thing. Try and remember that things get better from here. To watch a child suffer is a horrible thing. I would gladly take the pain, from a child I dont even know. It will all work out. Just hang in there. Ill be thinking of you.
:shake awww sweetie :( we are all here for you and you know you can rant and rave anytime.

Please hang in there.
Raw Deal, Rebecca! What more can I say, but hang in there. There is much to be said for perserveance.
:shake poor baby and poor you. :( :( I remember that great phone call a year ago. :(

He's a tough kid, we already know this. He'll be fine. You're in my prayers.
Sorry to hear it. I'll be praying for you and your son.
Thanks for the support gang, you got me through this last time, so I'm totally counting on being able to blubber on your metaphorical shoulders once again.

He's here with me. Him and his ear full o' crud. Now he has an excuse to ignore me when I talk to him. I'm in the throes of organizing all the doctor stuff, getting his CBC later today so we can see where his little immune system is standing. I'm glad to have you all to talk to.

Especially you, JDogg, I've seen how you are, and I understand that you know that feeling of helplessness, just wanting something different for your child. I see you playing the hand you get happily, glad to have a hand to play. Out of respect and tenderness for you, I'm going to grab on tight to the grateful feeling, and focus on the fact that there are things I can do to help him, and that's a great thing. I'll try harder to appreciate the good More than I chafe at the bad. There is a wonderful satisfaction in doing all those things to make his life better, and simply enjoying him, instead of fixating too much with the stuff that catches me right in the throat. I'm not as positive as you are by nature, but you've inspired me quite a bit, and I thank you for helping me to be a better mom.

This may not be what I'd have chosen, but I believe someone who knows better than I has set us on this path, and Christian is strong enough to make it through this. I don't know about me, the votes are still being counted. :laughing

Thank you all for being here, and supporting me through this again. You guys and gals in the medical field, suggestions are always good, and if you're interested in his case, his doctor is Maria Pena, at Children's National Medical Center. I understand she's pretty widely known and respected as a pediatric ent/surgeon. She adores my boy, so that boosts her popularity with me.

Thanks again all.
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:( sorry rebecca

no child deserves this...

im sure your son will be a better person for it in the end tho. I wish him all the luck in the world.
:(:(:( At this point, things are pretty much outta your hands. Whatever happens, happens. The best thing for you to do is give the kid all the attention and love he needs.... there's probably nothing worse than seeing a child hurting, not to mention your own... I agree to what longrider said: "I'd gladly take the pain, from a child I dont even know." Cause I was a kid once (still am ;)) and I know howmutch pain sucks when your too young to deal with it. Hang in there Rebecca :thumb.
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