"Not flesh of my flesh, Nor bone of my bone, But still miraculously my own. Never forget for a single minute,
You didn't grow under my heart - but in it"

Wednesday, December 22, 2010

The Inner Beast Emerged!

Today Noah seemed to be cranky all day but fine. The SW came and when I was holding Noah then he felt very warm. I took his temp and it was 100. Not high but still a little concerning. He then started his famous choking. He turned bright red and stopped breathing he did this 3x and then a little phlegm came out and he started to cry. His drooling is so outta control its not even funny. Seriously the kids is like a faucet that is always on. Anyways all of this compiled with the fever had me a bit concerned and I called the doctor. Our Ped wasnt in so they took the message and I got a call later from a "Matt".

Matt: Hi is this Noah's mom.

Me: Yes

Matt: I am Matt from PMA and we think you should take Noah to the ER.

Me: I dont want to.

Matt: LOL.

Me: No seriously. I am not taking him to the ER (voice raising a bit)

Matt: Well Ma'am you cant keep putting children on antibiotics.

Me: Ummm I KNOW THIS! HE HASNT BEEN ON BUT ONE MED FROM YOUR OFFICE AND IT DIDNT WORK!(Voice raised higher)

Matt: Well what would you have us do ma'am?

Me: I think he should have breathing treatments. His humidifier seems to be helping maybe if we tried it we could rule it out if it doesnt work.

Matt: He needs to go to the ER.

Me: WHY?! THAT IS UNACCEPTABLE! I AM SO SICK AND TIRED OF YOU PEOPLE ALL PASSING THE BUCK! (screaming at this point) SOMETHING IS WRONG WITH HIM! LAST TIME YOU TOLD ME TO GO TO THE ER YA WANNA KNOW WHAT THEY DID? ONE CHEST X RAY AND SENT ME HOME WITH A DIAGNOSIS OF NOTHING IS WRONG AND FOLLOW UP WITH THE PED! I CALL YOU AND YOU SAY GO TO THE PULMANOLOGIST I GO TO THE PULMANOLOGIST AND HE SAYS GO TO GI DR AND I CANT SEE THEM UNTIL THE END OF FREAKING JANUARY! (really woke the beast now screaming turning red and seeing spots) SO HERES WHAT YOU DO! GO BACK TO THE DOCTORS AND PUT YOUR FREAKIN HEADS TOGETHER AND DONT COME BACK OUT UNTIL YOU HAVE SOMETHING MORE FOR ME THAN GO TO THE FREAKING ER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (I hang up the phone)

They have not called back. Oddly enough that after that call I layed my head on the floor almost in tears and laughed. It felt kind of liberating. Who do these people think they are? They all pass the buck and no one will do anything for my son and I think, no I am pretty sure I have had it!Not even 5 minutes after that call the DV was there and at the same time the NT called. God bless ECI. I just have to say they are some amazing people! I have had more help from Noahs therapist than his doctors. Both DV and NT said this did not warrant an ER visit.

NT has been so helpful. She ordered a delayed gastric emptying test that the drs told me and Nancy they didnt have when Nancy told them the drs in Texas said Noah had this. I also have to call tomorrow and get his saliva test ordered.

Being Noah's mom and being here with him every day for 7 months I know my baby. Up until today I was doing everything every doctor was telling me was best for him. Lately, I feel more like Noah is my patient than my baby boy. I need to just get back to knowing that he is mine and I do not have to do everything every doctor suggests. Like one doctor tells me feed him on the dot at 9, 12, 3, and 6. Do not be late. You must do this. I do this and Noah vomits and the next doctor hears the word vomit and says reflux! No tests just vomit = reflux. Then reflux meds dont work so we stop that due to side effects, then all the saliva, more than any typical baby. No one will look at the cough, the choking and the vomit separate, nope its all reflux.

Here is what my uneducated mind thinks. Cough- all research points to reflux(due to gtube). Vomit- too much formula in his belly and delayed gastric emptying. We put him on a continuous feed where he gets about an ounce an hour and he doesnt vomit, 4 oz a hour he vomits. Choking- too much drool.

Will I take him to the ER like they suggest. Hell No! Will I start to be louder and stronger? Yes! My kid needs me to be. Someone needs to look at Noah and say ok, lets figure this out! Where is Dr House when you need him. Will I be going to Texas for a much needed break, oh yes as soon as I can! I need a break from all these crazy people!



Be blessed

3 comments:

  1. HANG IN THERE MAMA BEAR!!!! I have been EXACTLY where you are!!! About all that phlegm: If it's SUPER STICKY, it's coming from the lungs, usually after aspirating. If it's SLIMY, but NOT STICKY, it's coming from the esophagus/stomach and is from refluxing.

    I'm sorry you and Noah are going through this. We went through exactly the same junk with Angela when she was about the same age. I was lucky, I had doctors who listened to me and trusted MY instincts about MY CHILD. I'll be praying for you tonight, that SOMEONE will listen to you. That you will get connected to THE doctor who will be an ADVOCATE for Noah, and not just another doctor.

    ~HUGS~

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  2. Praying for you and Noah Ashlee! I am so proud of your rant! You need to stand up for yourself and for Noah! Love your way, Kelli

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  3. I agree that no one knows Noah like you do. That is why they call it "practicing" medicine because the doctors can only make an educated guess at what is wrong. They do not have a mother's instinct. You are Noah's best advocate. Keep fighting for him!!!

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