Monday, March 5, 2012

I'm not the Doctor. I'm just the mommy.

And there are times when the mommy should trump the Doctor.

Noah isn't doing well. (If this is how you are finding about it, I'm sorry. I need to work through it and get rid of any bad feelings before I can just rehash the same thing over and over on the phone- so please forgive me)

He seemed to show improvement after the steroid dose and pacer. He started eating better and feeling better and he stopped throwing up. Well, now he's doing all of that again.

The poor kid has lost a ton of weight and looks like you would find him in a concentration camp. I expected some weight gain after the steriods but we saw nothing.

After his last cath the cellular rejection was a zero so they cut his steroid in half and planned a course of treatment for antibody rejection. Almost immediately he started feeling too tired. His resting heart rate was way too high for him. He stopped eating as well, looks super pale, he started throwing up after meals again.

I'm telling you. Something isn't right. He needs more treatment. Denver agrees. Now I just have to convinve Primarys to agree. I don't think another cath is going to show the localized/patchy rejection that I've suspected from the beginning. But he needs to be treated because his symptms aren't getting better. Regardless of the tests! Plus, sending him home and tellin me to watch for symptoms - the SAME ones I just told you he is having is so not helpful!



2 comments:

  1. Stand strong Mom, you know your little sweetheart best!
    Mothers intuition is always right.

    ReplyDelete
  2. You do what YOU think needs to be done for Noah. You know him better than any other person on this earth. Fight for what you think he needs. Prayer for cardio....that they may know what Noah needs.

    ReplyDelete

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