Restless day

Hello everyone. Ava slept most of the morning. Then she got up and was very crabby. I wasn't sure if it was pain or just pure frustration. I asked the nurse to give her the extra dose of Adivan and she seemed better. My Mother came up this afternoon. I was so nice to see her. Whenever she comes Ava seems to be at her worst. She was very irritable and didn't even want to go for her normal stroller rides. I was asking Cassidy our nurse if she had been given anything new. There was one drug but it was just and ibeprophren. I asked about the effects of the Reglan that she just starting getting yesterday. She didn't know but would look it up. I told her I thought it had side affects of restlessness. Then it hit me, I took Reglan about a year ago to help with my milk production. It made me crazy and restless. I told them to stop this until I could talk to her doctor. Usually when something doesn't work for one person in the family it tends to have the same affect of another family member. She just was very uncomfortable.

So onto the bad news. The doctors told us today what the "plan" was for Ava's future surgery. They expected to wait another few months for her intestines to heal. Right now they are all bunched together and are not separate. They must wait until this will get better. Then they expect to have to go through her entire section by section and see if they find any obstructions or holes. Are you ready for this? The surgery will probably last for 10 hours or more. I just can't think about this at this time. I'm sad she had to go through what she HAS been through. If I drell on what will happen later I will go insane. More pain, more hospitals, more drugs, more withdrawls, and more hard ache.

The good news is that they feel if I am ready to tackle the at home care she could be home soon. There is not much they are doing now that I couldn't do in our own home. She has her Hicman line, which is a central IV line, for her nutrician, pain medicines and her stomach medicines. The also told us that she would probably not stop throwing up. See her intestines are not working properly due to possible obstruction and just the fact that they have been through so much trauma that they are very slow moving. So her intestines send a message to her stomach saying, "Hey we can't work fast enough here so you are going to have to make it go back up there." Then she throws it up. So they believe it is a combination of with drawls and her intestines not working right.

This means I will be responsible for giving her all her medicines through her IV. She will not be able to eat anything by mouth. There will be a home health care nurse that will help me with her wound vac. Her open hole dressing has to be canged three time a week. She will be on IV nutrian for about 12-16 hours a day. I guess we will just have to get adjusted to this as Our new normal. If she catches something we will be facing delayed surgery problems. I feel I can handle all of this. It will be great to be home. They are not for sure of the date so we will see. I'm not convinced it will be too soon as I know hoe hospitals/doctors really are when it all comes down to it.

I'm scared bringing her home. I know we are going to have to be like wild cats when it comes to germs. It will be torture for all of us to keep her germ free in the winter months. BUT I know she wwill get better much f aster in her own surroundings.

So that is the nightmare we are still living. I was feeling very frustrated today and Ava was feeling lousy. I told her to lay her head on my shoulder. She was sitting up on her bed. I started singing the song, "One Day at a time." to her. It goes like this.

One day at a time sweet Jesus.
That's all I'm asking of you.
Give me the strength, Show me the way.
One day at a time.

I have to believe and trust that God will see us through and truly take it One day at a time. Thanks for all your love, support and prayers. It carries us through.

One more special thank you. We received the most gorgeous head band/scarf from Debbie, David, Sam, Jessica, Joshua, Jacob and Ben. They have a beautiful son Joel that died of CDH. Wow did it touch me beyond words. I just love it so much. If you want to read their story you can find it at www.joelarchie.piczo.com Thanks again guys. This was so nice of you!

I'm hoping for another evening like last night. Ava woke about 4 times but with the help of relaxing medicines she feel back to sleep.

Sorry I don't have any new pictures of her from today. She just wasn't happy so the pictures were not that happy. Everyone has bad days.

~Terri