How many times have I said that when you walk into the hospital you never know what you are going to find? This morning we found her Neurologist at her side and a pretty drugged and gross looking Ava. (I almost typed Elaina's name. Possibly because she is always covered in some sticky substance). However, this icky looking Ava had her eyes open too. She is becoming more awake, but not alert and oriented yet.
The reason for her appearance is due to the fact that Ava had a chest x-ray in the night. Apparently the tweaking of the vent was not working well. As it turns out, the vent was not positioned well and her right lung was not inflating. So they gave her some sedation and a paralytic, repositioned the tube and retaped it too. They got a repeat chest x-ray. Lung still not inflated, tube needed to be moved a little and adhered properly. So her biopsy is on hold until about 11 or 12. Assuming her lung will inflate. (This is where I would like to insert that 18-24 hours ago I was wondering if she needed a chest x-ray.) I am praying that the fact that she will be at least 12 hours without food will not set her back even further.
Last night I thought Ava was going into respiratory failure as a result of her presumed mitochondrial condition. Today I find out it's tube placement. Maybe next time we try to wean her off the vent we can make sure her tube is in a good place and we can listen to Mommy when she says something is up.
I am not bold enough to think that these crazy ideas are coming from me. I know that God is putting them in my mind. This stuff is way too complex to know it without training.
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Keep speaking up when God puts those thoughts in your mind. I think you're the person who is most in tune to Ava and the worst thing that can happen is the doctors disagree with you and don't listen... but keep trying. It can't hurt.
ReplyDeleteYou're an amazing mom and person, Amy. I know you're the best person Ava could have in her life. God definitely planned that part, that's for sure. :)
God gives us all an incredible instinct as mothers and when you have ANY sort of notion that something is wrong...always speak up! Dont take no for an answer. She is your person to protect - any doctor would be crazy not to listen to a mother's instict.
ReplyDeleteYou know your daughter better than anyone else...never hold back:) Ava is so blessed to have an amazing mother that you are. We continue to pray for Ava and your family everyday!! Love you:)
ReplyDeleteI agree with everyone else's comments. I was in a situation when I was pregnant with my boys (although I didn't know I was pregnant yet) and I suspected I had a condition that my doctor said was impossible. Well I called several times over a few days and finally they said to come in so they could have a look. I could tell they still didn't believe anything was wrong and they were just bringing me in to shut me up. Well, they were stunned to find that I had EXACTLY the condition I suspected I had! It was an unusual event but so it was - and if I hadn't pushed I could have ended up in the hospital. And from that I learned to trust my instincts and to realize that doctors aren't infallible. I wish the best for Ava, I think of her every day! Stay strong.
ReplyDeleteAmy and Allan, thanks for keeping us updated about Ava's progress. You are in our thoughts and prayers everyday. You are wonderful parents and God is by your family side at all times. Sandra Tineo
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