Hello to everyone. I got a small nap today and I feel a little bit better. My mind is still running a little slow so bear with me. Last night I was a nervous wreck having her on the suction machine because our machine isn't for "constant" suction it is an intermediate device. I called the Apria company to find out what "Low" suction meant, which was what they told us to put her on as soon as we got home. Well the guy was shocked that they let her come home. He told me that he thought if we ran her machine at constant it would burn up. Then he said there was no accurate way to set it at a low setting. I panicked to say the least. He walked me through the steps of setting it at the lower speed. Then he told me that he would see about a different machine but again it might be tough to do for a home situation. So all night long I shined the flashlight to see if everything was working properly. It was. My eyes almost never left her pulsox machine as I studied her heart rate. I knew one sign that she was in distress was high heart rate. She seemed to be doing fine heart wise. Then I got a little concern because she was putting out quite a bit but once again I am not a nurse. So I watched and got little sleep. She still rolled around about 5 times as though uncomfortable. Then she would fall back to sleep. Oh yea another thing about her suction machine is it is SO loud. It's vibration and noise could be heard through out the entire house!
She finally woke at 6am and wanted to go play. I called her doctor and asked about her output and he was thought that seemed high so he told me to set her to gravity unless she seemed to have an unhappy belly. This made me rejoice to say the least. Did I mention my pounding headache from the loud machine all night long? It was bad! So we stopped the machine and she was able to move arounf better but still hooked to her TPN. After we unhooked that she was back to her normal happy self. My Mother came over to clean this morning. "Thanks Mom!" Brian does pretty good about doing the laundry and keeping things straightened but dishes, well let's say he's not thrilled about doing them. And also Karen, Brian's Mother went and bought us groceries. I am so greatful. I just can't leave the house and Brian is always working.
The plan for Ava is to give her boluses of IV fluid. We don't want her to get low and become dehydration. That would be a little hard to do since she is on 100% TPN feeds but we need to be safe since she did throw up quite a bit and her output last night was so much. Then if she starts feeling better we wait of course. She has an appointment January 27. They want to do a revere swallow. (That is NOT the technical term so don't laugh!) That means give her an enema and see where it goes that direction. Also to do a swallow study AGAIN. I hate them and I told them NO yesterday and insinuated on the CT scan. They are pretty much the same just the scan shows a little more. So far today she has not thrown up. I say that and then it WILL happen in a matter of minutes but so far she is good. Then how do you throw up if there is nothing in your stomach? When she awoke from her nap she seemed a little more uncomfortable. We will see how she does tonight. I am not going to let her be uncomfortable as I know we will have to move surgery up.
Here is a video of yesterday. I will also add pictures of her today.
She was spreading out her blankie all by herself!
On a very sad note we found out this morning that Brian's cousin was murdered by her X husband. He strangled her and then started her basement on fire. We are all in shock although we all know he was very weird and might be capible of this horrendeous act. Cyd was a wonderful, caring, lady. She was one of the sweetest people in my life. She has two daughters and they already miss her so much. Her Mother and family are just devastated. We all are. Her killer is behind bars. Thanks you God. Please pray for healing in our hearts as life will never be the same without our cousin Cyd Crawford.
Thanks for checking in on Ava. She still has a long road ahead of her. God heals!
One last thing.....all your messages well the truly give me the strength and stamina I need so to all that pop out and write I want to thank you from the bottom of my heart. You are my angels!
~Terri
6 comments:
What a babe she is, I'm so sorry about your cousin, hopefully he gets what he deserves. Praying for Ava to stop the barfing and get better. Lacey and Jax
It was so nice to pop on your blog and see pictures of Ava smiling. She is such a strong girl.
I'm very sorry to hear about Brian's cousin. I will pray for her children as well as the rest of the family.
Kaci
I just logged on. So glad to hear that you are home at least. Sounds like you had a long trip. I think that is wonderful when the doctors learn to trust and listen to the parents it makes our lives a whole lot easier. I am sure she will heal well and be able to have the surgery soon. Hang in there and make sure you try to get some rest. I know this is easier said than done. We will be praying really really hard.
In our thoughts always.
Andrea
I hope that Ava starts sleeping more comfortably, as well as you. It is so nice to have family that is so helpful.
I am sorry about your husband's aunt. That is horrible. I am glad he was caught and will pay for what he did.
Thinking and praying for you guys, always.
Amy
Ava is always so photogenic. the video of her is so cute. you would never know she was sick the night before.
I am sorry about Brian's cousin Cyd.
we have Ava in our daily prayers.
Ava looks so happy, it's so hard to tell she's that sick just by looking at her pictures.
I am so very sorry for your cousin :(
I'm keeping Ava in my prayers.
Fer
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