Thursday, February 25, 2010

tubes and changes

We are still in the hospital and from the looks of things we won't be leaving until next week some time.

Emily is still not eating much at all. Today she had a grand total of 3 1/4 ounces of formula or breast milk. Yesterday was even less than that.

We knew it was coming but we still did not want to hear it...The Dr. is putting a NG tube in tomorrow. For those of you who don't know what that is, it is a small tube that goes in one nostril and down the throat into her belly. It allows us to feed her or give her medicine when she can't or don't want to eat.
I know it is temporary but still its hard to hear.

Right now it is what Emily needs to grow and get better.
Also, in the morning we are going to stop her klonopin and keppra all together and we will be increasing her sabril.

Her spasms have returned but she has not had one big seizure!! They are fewer and shorter also. She is down to 3-9 and mostly under 3-4 minutes.

The doctors are not worried about her spasms right now and they believe with the sabril increase she should stop that too.

You know we came into the hospital on Tuesday just to give her fluids for 24hours then go back home. Little did we know this was going to be our longest stay yet.

Emily is still very sleepy. We don't know if its from the klonopin/sabril combo or just the sabril itself. She has never became this sleepy on any med before so I think its probably the sabril.
They also think she may be coming down with a little virus. It just sounds like she can't clear her throat, but only when she eats or tries to breath through her nose. She does not have a fever or cough so I am not sure I agree with them on this one. Personally I feel like its due to low muscle tone and that may also explain why she is not eating. I think its just too hard to swallow because all of her meds have made her muscles so very weak and to swallow properly you have to have some muscle control.
No pictures today. Joe has to go home and get more clothes and wash the ones we have here after work tomorrow, so I am gonna have him bring my camera up.
Hint hint honey if you are reading this!! love ya :)
So if you will just pray for our day tomorrow. It will be a hard one.


  1. Hang in there! God is making the changes that are necessary for her to get well and stay well. Sometimes we have to take a certain road to get to where we need to go.
    Big hugs,
    Mary Johnson

  2. Love you guys, Erica. Keeping you in my prayers.
    Lisa French

  3. To me, technology is crazy! To think that they can feed you with a tube that goes up your nose!!!! amazing the things they can do...

    But I know you know this is going to help her...

    Praying still for the adjustments of her meds...
    Love you all!!!

  4. Lucas had an NG tube for several days when he was in the NICU (I have pics of it posted). It seemed unpleasant to us, but he really never seemed to notice. It actually brought me a lot of peace of mind, knowing he was getting the nutrition he needed to grow. It will only be temporary. Hang in there, still praying.