Sunday, June 5, 2011

One day at a time...

Last night she had a good night.
Our nurse told me she basically slept from 11 pm to 5 am without the need of any of the "as needed" drugs she's on, like Pentobarbitol. She is on Precedex and Ativan around the clock as well as Fentanyl; with Pentobarbitol, Benadryl and Ativan every 2 hours "as needed". They've been weaning her off the Fentanyl slowly and she's been responding really well, and they should be taking her off it later this afternoon.

Her trach looks like it's healing well according to the ENT (ear, nose, throat) doctors, and they suggested that they can start weaning down her ventilator settings today. They have her trach change scheduled for this coming Wednesday then hopefully the track that her trach is in will be more developed and it won't come out like it did last Monday.

We heard from the Neurology team yesterday about some of the initial results from the muscle biopsy. It looks like they have found some droplets of fat in her muscle. They still can't tell us exactly what that means yet, and they are continuing to do more in-depth stains to the muscle tissue to see how it reacts. They are thinking that it's looking more and more like it could be mitochondrial, but they still don't know for sure yet. It could also just be metabolic. Again, they are going to continue investigating before they give an exact diagnosis, as they still don't have one yet.

So, I mentioned that she got her IVIG doses last Tuesday and Wednesday. Neurology told us that it can take up to 2 weeks to have an effect, IF it works at all for her. I don't want to get too hopeful but we have noticed some of her movements decrease a bit. I don't know if it's that the IVIG is working or what but I'm happy with that. It's like I told Zev today, "We have to just take things 1 day at a time, and not "get our hopes up" but enjoy it if she's looking happier and better. We've been getting her to smile more often in the past few days as well. That is a good sign, I think, because I know that she is still responding to us and communicating. She'll sometimes start to cry or least look like she wants to cry but no sound comes out. It breaks my heart to see her cry but at the same time I see it as a positive thing, since crying is another way for her to communicate with us.

Here's a video comparison from today compared to last month before she came up to the PICU (the sound you hear was her Laryngomalacia, which they fixed when she got her trach)
Last month: May 5th, 2011

Here is a video of her from today (June 5th):
(towards the end of the video she starts smiling)

1 comment:

  1. Just came across this via the 501st Tweet & wanted to pass along thoughts & prayers from my family. As a parent it breaks my heart to see infants in the hospital. Those pictures of her smiling are precious. Keep fighting the good fight & best of luck to you all!