Jaime Albert Trost was diagnosed with Right-Sided Congenital Diaphragmatic Hernia at 19 weeks gestation. He was born at 34 weeks gestation on 4/16/09 as a hemophiliac with his liver and intestines in his chest. Jaime had his 1st repair surgery at 23 days old. He re-herniated in September 2009, causing his bowels, kidney and liver to be up in his chest. He had his 2nd repair surgery at 194 days old. Though Jaime still has many medical challenges ahead of him, today he is a thriving KINDERGARTENER who has beaten the odds!

Lilypie Birthday tickers

Lilypie Kids Birthday tickers

Thursday, November 18, 2010

And the Saga continues...

I took Jaime to the pediatrician today...only to find out that his ears are once again infected! Go figure! Several appointments ago I was told that it wouldn't be a problem to do Jaime's surgery if his ears were infected as long as his lungs were clear...well they ARE clear, yet someone has made the executive decision NOT to operate.
I can not even begin to tell you how I feel right now! I'm afraid that all of my positivity has been drained and exhaustion and sadness has set it. The pre-op process was was bad enough for Jaime and to hear that it's all for nothing and will have to be done again?!? Sure, we can reschedule surgery in a "few weeks." Yea, in the meantime it's not the drs. who are up night after night cleaning up vomit from their toddler because his ears are infected and the drainage is gagging him. It's not their child who doesn't speak and may have permanent hearing loss. It's not their child who has a hard time gaining weight to begin with just to lose 1.3lbs in a week due to illness related to his ears. It's not their child at risk of becoming resistant to antibiotics because they're on them so much...already resistant to one! It's not their child whose veins are already shot from all of the poking and prodding. It's not their child who is miserable and forced to see dr. after dr. and get test after test...simply for nothing to be done in the end.
I understand being cautious, I truly do. But, when I do all of the right things, get "cleared" by all of the right people, put Jaime through hell and back again...just to be told by someone who doesn't know Jaime at all that they want to cancel surgery?!? I can't accept that! News flash, Jaime has and always will have crap lungs...a "few weeks" from now won't change that...in fact, chances are a "few weeks" from now Jaime will, once again be ill. He will never get better until he can have his ears surgically drained and cleaned. He needs to be "reset." I've heard that by just about all of his drs. It's just not fair! Something so simple....an easy "cure" for Jaime, has turned into a fiasco. There's no reason for it! I would be the first one to say that I'm not comfortable with Jaime going to the OR if I felt like he wasn't well enough to do so, but I'm JUST "MOM."

Here's to better days...and to a Happy Thanksgiving with a child who WON'T be post-op! :)

P.S. I called the pediatrician to let her know what was going on....she just called back. She is just as frustrated as I am. Jaime will now be on continuous antibiotics until he's post-op...whenever that may be!

8 comments:

  1. Sheryl,
    I am so sorry that you are running in to such frustration! I am not surprised that you have hit a wall in your positivity.
    I will keep you all in my prayers, that Jaime will miraculously stay healthy and be able to have his surgery soon.
    darcy

    ReplyDelete
  2. ((((HUG))))

    I so wish I could do something more than a virtual hug. I can't imagine your exact frustration with this but understand the frustration. I hope Jaime's ears clear up on yet another antibiotic and they are good to go for the next surgery date.

    Sending lots of thoughts and prayers,
    Elizabeth

    ReplyDelete
  3. I am so sorry. This being Mom thing is hard then add in all medical stuff and we get the short end of the stick. We might be "Just Mom" but we are usually right.

    Don't you just want to drop Jaime off for 24 hours with the doctors who make the decisions sometimes?

    Holly

    ReplyDelete
  4. goodness- i'm so sorry!!! what's up with the new doc tho?? Poor Jaime!!! all that crap he has gone through and feeling like poo all the time has just got to suck..!! You would think the docs would want to just get it done so the poor kid could be on the mend!! I'm livid for you!! ugh!!!

    ReplyDelete
  5. Your life sounds like mine and i know that in no way makes you feel better. I love you and we will talk soon and i can fill you in on why i fell off the face of the earth, i.e. FB. You know nothing in our lives is "straight" forward or our own, if that makes sense. Text, email, call. I'm here for you and I love you very much.

    ReplyDelete
  6. I am so sorry! Thinking of you and Jaime and hoping that the stupid doctors get their stuff together and reschedule soon so Jaime can feel better!!!!!!!!!!!!!!! Hugs!!!!!
    Jennifer

    ReplyDelete
  7. I am sorry that all of you are dealing with this!! Jaime deserves to feel better and you deserve to be heard!! A mother knows best falls very true here!!!! These doctors have no idea what you are going through. I hope Jaime is taken care of quickly!! He remains in my prayers!!!

    (((((HUGS)))))
    Joanna

    ReplyDelete

Note: Only a member of this blog may post a comment.