Wednesday, September 22, 2010


We continue to marvel at Natalie's face and her new expressiveness. Any concerns about seeing her with a trach have completely faded away-we just see Natalie.

She is much more comfortable as long as she isn't being moved. Her new project seems to be getting her hands on the ND tube and pulling that out but so far her efforts have been thwarted.

That is sort of where the good news about recovery ends. Her O2 requirements have been hovering right around 86%. Sometimes a little lower, sometimes as high as 100%. Her lungs have been very wet from surgery so she is back on twice a day lasix. This afternoon they started to think outside of just recovery issues and decided to get a CBC and CRP to look for possible infection. Her CBC is perfect but the CRP is 64 (this is a general indicator of infection and should be <10). The CRP could just be from surgery, but blood and urine cultures were collected to rule out infection. She is back on antibiotics while we wait out culture results.

Her CO2 has been all over the place. We've been watching her vent settings slowly climb back up and it is so frustrating. The fentanyl seems to be suppressing her respiratory drive and she is not breathing enough over the vent. The fentanyl will be slowly weaned in the next few days so hopefully we'll see some improvement then.

Feeds were restarted this morning. She is at 3cc/hr now and will go up 1cc every 6 hours for the time being (full feeds are 27cc/hr).

We need prayers. Patience for us and wisdom for her doctors. This has been a very difficult 2 days. Even while we know the surgery is causing the set back I will not feel at ease until she turns the corner and starts making progress. So far they have not been able to figure out just what will do that.


  1. Definitely hang in there. The fentanyl is definitely a "necessary evil". It was the same with Brendon. They had to keep him on it so his body could recover from surgery and illness but at the same time it was paralyzing him a bit too much and he wasnt getting the fluid out of his lungs. They finally got the right balance of things and I know it will happen with Natalie too. Continuing to pray!

  2. Sending up some new prayers for patience and wisdom. You all are always in our prayers and we will just add to them. By the way...fetanyl is a harsh drug...Hope had to be weaned from it really slowly. Praying Natalie can get off it without any problems.

  3. Been thinking about you guys non-stop. I just now she will start to heal. She is such a little fighter and has overcome so much already. Much love to you and wish I could be there to give you lots of hugs.

  4. Just wanted to let you know we're still following Natalie's story and praying for all of you. We'll pray specifically for patience and wisdom, and for Natalie's little body to heal and get stronger. Hang in there!