Wednesday, March 26, 2008

Two Steps Back

Darn sedation!!! I think this is what causes Ava to get into sticky situations. Every time she is sedated for a procedure she has trouble maintaining her sats and keeping her lungs fully expanded. It happens every time. Right now the doctors are debating whether or not they need to put her back on the vent. This time however, they will try using a mask rather than putting the tubing back down her throat. I do not like this at all, this is what Kaden went through before being trached (I am not saying Ava is going to be trached), and it made him stop breathing. So I imagine it forcing air into your lungs making it difficult for someone to exhale. I do not know how true this really is but that is why I think Kaden had stop breathing while on it.

Right now they are trying breathing treatments on her with the same concept, but it only last about 10 minutes. She is upset the whole time, so I can only imagine how mad she is going to be with a mask on 24/7. Then I see them having to give her more sedation and the vicious cycle will keep going and she will end up intubated. I am going to plead my "case" to the doctors and hope they agree, of course if they absolutely feel it is in Ava's best interest to be put back on the vent then that is what we are going to have to do. I want to do what is right, but I want her to be comfortable at the same time. As we all know, I am not a doctor, I am just a mommy trying to keep my baby girl happy but at the same time I want what is best for her. I trust the doctor and her judgement.

I just talked to the doctor and she said what I was thinking without me having to give my input. She did say that if it doesn't work what they may end up doing is intubating her because she will need it for her G-tube surgery anyway. This makes sense to me, but we still do not have a surgery date and I don't want her to just hang out on the vent. Only time will tell what is going to happen. I will keep everyone updated.

My two boys are coming up today!!! I can't wait. The Easter Bunny had stopped by Sunday and Kaden's goodies have been waiting for him. Lucky Kaden, two chances to find eggs...not that I think he really cares too much about egg hunting. I am not sure if we are going to get a chance to watch the movie this week, it just depends on how well Miss Ava is doing.

Please keep Ava in your prayers, she still really needs them.


The Bryant Family said...

We will say an extra little prayer for Ms Ava tonight. hang in there. I know the stay is long and the days all run together but I truly believe there is a reason for everything. (not that I dont question it a lot...)

Amy said...

Hang in there. I know the rollercoaster ride is not easy. Just remember sometimes it takes to steps back to go four or five foward and that is still progress. I hope whatever is going on with Ava passes. I know how badly you want to go home and I cannot say that I blame you. Look how much Kaden improved just by going home.
Make sure you are taking care of yourself as well. I worry about you. I kow how hard it is to eat well when it is just you. One good thing, if you were dreaming you were getting good sleep.
We will be down this Saturday. We have something for little Miss Ava. I can't wait to see you guys. I wish Kaden and Nathan would be there, but we will have to make a point of seeing them another time.
Lots of thoughts and prayers your way.
Amy, Michael, & family

Heather said...

My name is Heather and I have been following your incredible journey. I have been praying for you all and will continue to, everyday, until you and your little family find your way home. We are just another family struggling also to find our way through this crazy world! Feel free to visit us and our little miracle,Zoey Grace, at our blog, Take care and I hope today becomes a better day for you and little miss Ava!

Lynn Nastasio said...

Ava and your family are in our prayers. I know how hard it is to take those steps backwards. Just remember what a miracle Kaden is and that the end result is all worth it. She will be so awesome and happy once you get her home. I know how hard it is to live at the hospital but you are what is keeping her going. She can feel all of your love. My husband and I were so sad to see so many babies whose parents never came to visit or came once a week for 5 minutes. We never missed a day with Sarah and they always said that is what kept her going (she had a 5 % chance of survival). Keep the kisses and songs coming and we will keep the prayers coming and before you know it you will all be at home helping another family through the same situation.

Pamela said...

We are always praying for Ava. I have missed out on a few days and am catching up on everything. Love, love, love the pictures, the two little feet hanging out the end of the sheets is so cute. Hope that Kaden had a good time hunting for his eggs. I think he will make a fantastic golfer, one thing for sure is that he has an arm on him, if only he could possibly play baseball, who knows one day he just may. Hang in there and make sure you are getting enough rest, possibly you did at least one night since you had a good dream. Keep working with Kaden and he will keep making noises for you. I have a cd that has sign language on it for you that you use on the computer. I will bring it to you the next time I come to visit or possibly send it with another family member that may be coming to see you before I make it there. Praying for Ava to get better and that you will all be able to go home to the comforts of your own place and have your sanity back. Lots of love and always praying.
Pamela and Megan