Sunday, January 1, 2012

the rest of the story...

Maddie is out of the hospital and surgery went smooth...as the ground hogs day continued...I looked at a nurse and thought where was my handbook...where is the outline and notes of what to do if something like this keeps happening...the doctors and nurses act as if I should know...but I dont...I seem to make the wrong decisions on a daily basis with my kids...it is not easier to raise a "normal" child...it is just different...it is just more routine...and it is similar to me...I can relate to Max and his issues...I have had strep throat, viruses, ear infections, etc...but I have never had a restricted airway...I have never acted like I was ok even though I was in pain or discomfort...this trip to the Denver ER was different then the past...it was clearly apparent that Maddie has a unique health situation and that no one has answers...no one knows the "right" thing to do...we have a "plan" now and in place and actually put in to motion...Maddie had her esophagus dilated with a balloon and will have a follow up esophagram in a couple of months here in Casper WY and the GI doctor will also come and discuss the next step in March so we can stay ahead of her esophagus closing...and cross our fingers no more rushed trips to Denver...I was so sad and scared on this trip...Maddie stopped breathing waking up gasping for air and at 4 am I took off to Denver..just me and my little girl...4+ hours later we arrived at the hospital...instead of going to the ER I went to the doctors office...I did not want to get lost in the system...I knew she/we would be ignored because she is considered low risk because she is breathing...I walked into the office building changed her and got her ready for a long day of poking and prodding...her surgeon that repaired her at birth and the office I call when I need assistance turned there back on us...told us they no longer could help her...we were on our own I literally turned around and there was Maddie's GI doctors office I walked in and asked for a esophagram...they turned me away and sent me to the ER...and again we were lost in the system...just what I was trying to avoid...the ER doctor came in and had no answers just that Maddie looked fine but sounded a little froggy...the GI doctor came in and said that nothing was seen on the xray and it looked like Maddie just had a respiratory issue that her lungs were "big" and wanted to bring a pulmonary doctor into see her...I said no...I demanded a swallow study...then as a parent you start second guessing yourself...have I wasted all this time and energy on a respiratory issue...but I knew when I could hear the stuck food...and she was crouched in the corner that I was right and I had to fight...the nurses, the ER doctor and the GI doctor said to me there is just nothing wrong with her...they said that she was just tired that it must be her nap time...like I did not know her...finally 3 hours later after we checked into the ER we went in for our swallow study...she swallowed the barium and began to choke and gasp on the table...I just looked at them and told them I was right...and that I was pissed...the GI doctor would not come talk with me...he had the ER doctor relay the message that we would have surgery that day...I said I would not talk with her anymore I wanted the GI surgeon to talk with me...no messages...he came in and said I guess you were right that she has a blocked airway and that she was stricturing...they would not be able to dilate her at that time...he said they needed to move fast because her airway was at risk...REALLY now you want to move fast...now you want to help...I can not explain the rage I feel when I am not taken at face value for what I know is happening...like this is my first time...they wanted to put an IV in Maddie right then -she had gone with out food and water for 12+ hours and now they wanted do this...when I asked for it earlier I was told no...I told them no they could wait till she was under anesthesia...at this point it was pointless to try she is dehydrated and has flaccid veins and they would not be able to get a good stick...they again said that they had a lot of years of experience and that they were very good at it with condescending smirks...I appeased and said I would only consent if they used a numbing agent...sure enough 20 minutes of them trying and not getting it they conceded that it could not be done with out hurting her...when will people listen to me...so Maddie was in surgery by 2:30 pm the doctor said this will only take a 1/2 hour at the most...2 hours later he came and saw me...he said it was a tighter and harder then he expected...why do they not listen...the dr came out and said she needs to be dilated asap and that the doctor could do it Tuesday it was Wednesday...really that does not work for us...I am done by this point...I began calling other pediatric GI doctors...getting second opinions...I am tired of fighting...I am tired of trying to tell them we can not afford to take off work...I cannot emotionally handle anymore of this...I began calling her GI doctors office every hour until he squeezed us into an appointment...and there Chad and I pleaded and discussed and explained the hardship of us coming to Denver like this...it is not good for anyone...he then somehow got us in to surgery Friday and she was dilated...so full circle we have a plan...I am still shaken by this event...I am still questioning the medical community that seems to have all the answers but do not let the parents in on that very important plan...TEF/EA will not go away...it does not seem to be as manageable as we had first thought...Maddie she is a rockstar...stronger then I could ever be...more patient then I could ever imagine...through this all Maddie reminded me to fight for her...to go with my mommy instincts...and that she is SOOOO worth it....so now I struggle with how do I resume "normal" life...how do I look at others and care about there lives and what is going on with them...how do I be a friend...I cant really...I am consumed with how to be a mom...I am consumed with how do I prevent my children from hurting...I do not bounce back like I used to...I do not get to high with the good news and I do not get to low with the bad news...I am like a robot...I do what I need to do to get through the day...it is successful when both my children are safe and healthy...I want the sense of "normalcy" back...I want to get up and not think of medications, doctors, appointments....I just want to wake up and think what am I going to wear today...

12 comments:

  1. Reading this has me in tears...You guys have been through so much.
    Kim you are an AMAZING Mom and I love how you fight for your daughter!! I would be every bit as pissed off as you were at ALL those idiot Doctors!! Maddie is so blessed to have a strong Mother...One who doesnt give up on her and trusts her instincts and pushes for the things her childern need.
    Give Maddie a hug from me and Russell. We love you guys!!

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  2. I want you to know something very important. We may not see each other very often, but I am and will always be your friend. You can call me at 2 am to come stay with Max, or any time to vent or cry. I won't ask why. I won't question you. I will continue to cheer you on because you have a super powerful mommy gut. You are amazing. You are strong. You are the kind of woman I endeavor to be like. Truly.

    LOVE LOVE LOVE to you and Maddie and Max and Chad. Love, and peace too.

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  3. I want you to know just how amazing and how powerful your post is. You are an incredible mom, and every medical professional should read this. I am here for you too...any way I can be. It may not feel like it now, but you will return to a sense of "normalcy." And you know why? Because that rockstar of a daughter will show you the way. Hang in there...hang tight to the love of your family and friends. My thought and prayers are with you.

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  4. Tears here, too. Absolutely. Heartbreaking. I am so, so, so sorry. Why do I keep hearing again and again from different people that the medical community won't listen to the parents?!? It goes against everything they're supposed to stand for, I think. Unbelievable. I hope they tune in now, and realize what they have very nearly done... Thinking of you all, hoping you can put this all in the past sometime in the not-too-distant future.

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  5. Kim, it's another world isn't it. To anyone that has never had a very sick child this world is one they cant imagine, where you survive and that is all. It is tough going, the first year of Owens life was like this because after heart surgery he got RSV and we were in and out of hospital for over 8 months. I felt like none of my friends could relate, their world went on while mine stopped when ever we had to go back to hospital. None of my friends understood that our whole family was effected by it, col couldnt work, the other children needed taking care of, it got so that I didn't even bother to tell my friends when we would get re admitted again, I just started living in our
    own world. It was intense and nothing else seemed real or important.
    What I am trying to say is I think I get where you are coming from, please keep blogging about your feelings or please email me. I am so sorry you guys are going through this. And I hope you are never made to feel vulnerable and powerless, or dismissed, diminished or ignored ever again. You are an intuitive, courageous, intelligent mother, hang in there.
    With love and blessings V

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  6. I'm so proud of you for making those doctors keep checking. I can't believe them! Sending you thoughts and prayers for Miss M and also for you to keep getting through it.

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  7. This post made me so sad and angry...I can't imagine what that must have been like for you, Chad or Maddie. The fact that you had to tell the Drs how to do their jobs and that they didn't want to listen to you or help Maddie from the second you got there breaks my heart.

    You're an amazing mom and right now that's all that matters, the rest can wait!!!!

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  8. Oh, this hurts my heart. I can't imagine what this must have been like for you or for Maddie. The way you advocate for Maddie, though...WOW. It is so sad that you have to be as strong and make them listen, but so wonderful that she has YOU for her Mom. You are amazing. That much is obvious! I'm so sorry for what you're going through!

    Big, HUGE hugs to you and Ms. Maddie.

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  9. Don't these doctors know her and that she does this?? Sheesh, at least at the other hospital they knew Jax, and didn't very often brush him off. I hate having to be a bitch, but our kids lives depend on it. I wonder how many kids would be dead if moms hadn't intervened!
    I'm still fighting to find a good ped for Jax. What makes me angry is i sit down with these docs, tell them what I expect, and how much work his is, and they say ok. Then when the phone calls start, they are suddenly overwhelmed. This is no help for my son! Grrr!

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  10. Oh Kim. My heart hurts for you, Chad and Maddie. It's not fair that you have to fight so hard when you know Maddie best. It shouldn't be this hard to get the treatment she needs. You are doing a wonderful job, just what Maddie needs.

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  11. Ugg, I wish I could give you the biggest hug. So sorry that you had to go through all that. I'm so glad you stuck to your guns and insisted on her treatment. You are an amazing mom!

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  12. Keep fighting for Maddie because just when you think you're about to break, you get your breakthrough. Sending many hugs and prayers your way!

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