Hey everyone! Again, my apologies for not posting regularly. We stayed with Ellie until about 12:30 last night. I had a doctors appointment this morning at 10:00 am. So, you could imagine when we got home, sleep was all we both wanted to do. So far today, no changes with Ellie. Ellie's surgeon did come to see her today and check on her. We are still waiting on a response from the surgeon about when and if the chest expander surgery is going to be done. As soon as we hear a plan, we will let you know. Ellie had another good blood gas this morning (we love to hear any of these kind of things!). We have a new nurse today whom we like a lot. Since we have moved to a private room, there is a whole new group of nurses that we are getting to know. Ellie still has her primary nurses (the nurses she has had on a regular basis), but when they are not here we get a new nurse that works in the private room wing. Both of Ellie's day nurses the past two days have been really good and attentive with Ellie. We like that a lot. It makes us feel comfortable to know she has good care when we can't be here.
So, part of our routine now is to do trach care twice a day for Ellie. That involves cleaning around her trach twice a day and once a day changing the ties that hold her trach in place. I will admit when Matt and I first found out we were going to have to do this we were both VERY scared and very nervous. After watching the nurses do it several times, we have now begun doing a portion of it ourselves. It still makes me nervous, but it's not near as scary as I thought it would be. Matt and I both love to help with anything we can with Ellie. In the situation we are in, you can't do everything you would normally do. Getting to change her clothes, change her diaper, help with her mouth and trach care, means the world to us. It"s very special moments that we will never forget. Below are some pictures of me doing some of her trach care. Also are some pictures of Ellie having some fun. Ellie has a nurse and respiratory therapist that, when they are working together, have a lot of fun with Ellie. It makes her mommy and daddy smile!
I hope each and everyone one of you have a good rest of the day. I have to apologize again too. I have been trying to send this post now for several hours. My computer kept messing up on me. Very sorry for the delay.
Enjoy your evening. I know we will. Getting to be with Ellie, makes us soooo happy!
Love,
Ellie's Mommy
