Thursday, February 10, 2011

I am Momma...

hear me roar! :)

Long day today.

First meeting was with the surgery Dr's. They don't want your feeding tube on Monday. They want to wait till we have the results from the ear nose and throat (ENT) Dr's scope of your throat.

So here's how it's going to go.

Monday the ENT will make you sleepy and look with a camera at your upper airway in action to see if they can visualize your obstruction. After that they will sedate you completely and look deeper down into the opening of your lungs.

The ENT will be looking for two things. One to see if there are any signs of acid reflux that might be causing the inflammation that is blocking your air way. If the do see any signs of acid reflux than the surgeons will do the Nissen surgery along with your feeding tube surgery.

The other thing the ENT is looking for is to see if there is any changes with the Laryngomalacia (extra floppy skin around the vocal cords) and subglottic stenosis (narrowing of airway) that might warrant doing the Supraglottoplasty and dilation.

So depending on what they find you may have 1 to 4 different surgeries coming up. Holy moley!


So this afternoon two times you had a tiny bit of spit up. The amount was so small it can only be described as scant. So the nurse we to report it to the resident and came back saying the resident had given the order to stop your feeding for 24 hrs because he was concerned that you might aspirate (inhale into your lungs) the feeding.

I was shocked by the order. Having see the tiny amount of spit up you had, and being very experience with aspiration I felt the order was excessive and unwarranted. I explained to the nurse that I didn't agree with the order and I would like to see the resident before she implemented it.

So an hour and a half later the resident finally came to talk to me about it. He explained to me that he was concerned with you being on the high flow oxygen that you were a risk for aspiration and so he felt your feeding should be held. He felt with your history of acid reflux this increased you chances of aspiration.

I explained to him that you had been on the ventilator through the nasal cannula and had been actually vomiting your tube feeding they had not held your tube feeding then so I didn't understand why he felt it had to be held now. I didn't see any reason for you to go without food for 24 hrs or longer when you were only spitting up scant amounts.

Also that the Dr's have seen no evidence of acid reflux (that's why they don't think you need the Nissen surgery) so that again wasn't a valid reason to hold your feedings.

And since nothing is planned till Monday, and that's just a scope, not an intervention then what he was purposing was to hold your feeding for up to a week and a half.

You have finally started to gain weight (you weigh 6.5 lbs by the way) and without your tube feedings you would start to lose weight again. You would not have the energy to maintain your breathing and would end up back on the breathing machine guaranteed.

Not to mention that going without food would make you absolutely miserable and I wasn't going to let that happen to you without a good reason.

After going back and forth about the order the resident decided to bring in the neonatologist to discuss it with me. The Dr and I discussed the order and my reasons for refusing it and....

the Dr. agreed with me.

So enjoy your dinner baby. Mamma's got your back.

Of course if I see any signs that you are at a risk of aspirating then we will be holding your tube feeding immediately.

I have a feeling you will do just fine.

A few times today you were wide awake for quite a while. We played, sang songs, and snuggled. I love you so much my beautiful baby boy.


ellen charge said... Best Blogger Tips

soemtiems its good to get the mumma out and fight if you dotn fight then who will keep up the good work my lady

Mandy said... Best Blogger Tips

You are Mason's biggest advocate. Fight the fight, Momma!! :) If you don't, no one else will.

Justin and Victoria Nelson said... Best Blogger Tips

Keep up the great work, Mama Bear. You are the most consistent person in his care right now, and sometimes there are just too many different nurses and doctors that they don't see the ENTIRE picture like you do. Mason is so blessed to have you be his advocate, and I know that you all are equally blessed to have him in your lives.
We are big advocates for family-centered care - email me if you find yourself having any questions at all!
Love and prayers,