We were loners today but we didn't mind!
Hello Ava fans! Ava did well at the doctor's office today. Dr. Shilyansky said Ava looked really good. I told him I was amazed at how well her tummy was looking. I had never imagined it to look as good as it does! He was happy with her weight gain. She is up to 26 pounds! We are going to cut her Erythromycin this week to see if that helps with her nausea. We started it because this antibodic when given in small doeses helps to move the stomach along a bit faster. remember Ava's stomach has trouble emptying. It is very slow. But this may be why she is throwing up once to twice a day. It seems to happen after I give her a dose. One can draw conclusions!
I had a cute little outfit on her but she threw up on it after about 10 minutes after we got there!
Ava waiting patiently...better than Mommy. It took about 20 minutes for them to find us a room. Next time Mommy just might turn around and leave. We can't waitin the hall forever!
I had noticed a tear in her central line yesterday morning when I did her dressing change. I was very afraid it would leak soon if we didn't get it looked at. So one of their specialists came in this morning and looked at it. He said he has NEVER done a repair when the line wasn't broken or leaking. I said, "You haven't met Ava have you?" (Okay I thought that to myself!) He saw it through her Tegaderm and thought it didn't look bad enough for a repair. I immediately told them I wanted them to see it closer without the tape on it. After seeing the line he said, "Yes, it does need to be repaired." So there you have it! We parents must speak our minds and hearts. There was no sense waiting until the middle of the night going to the ER and then not trusting the doctor that has to do the repair in our town. (Plus all the germs in the ER....ya...ya...ya!)
One MAD little girl during the repair. Not happy at all. When she gets upset her face gets very bloochey. I felt bad for her although I really don't think there was pain involved. I do get so tired of everyone saying to her, "Sweetheart this doesn't hurt." No it doesn't but that doesn't make all this aweful stuff go away. She knows that hospitals and doctors mean PAIN! No amount of talking is going to help this 2 yesr old!
The line is a lot longer now with the repair.
This is the diagram of the repair process. They clamp the line by her skin but not on her skin. Then they cut the line by where the tear is located. Next they put the repair line into Ava's existing line. Then they put a brace or plastic piece over the two and glue inside the plastic tube. That's it! It was much simplier than I imagined. BUT the line is very long now and that created a problem when I tape it al down. I'll just say she has an added curl in her line now! Who doesn't need an extra curl?
This what her line looks like now. (See the curly Sue!) Except it isn't red anymore.
I also made Ava's Awareness cards last night that I gave to Ava's doctor and nurses. They turned out soooo good!
All in all it was a good appointment! We have cut her TPN down to 12 hours a day and we are upping slowly her g-tube feeds! Our goal is to get her off TPN but I know it will take a while.
I HAD to share this last one. Emeline is playing Guitar Hero and Ava is enjoying her sister! ;) See her pulling her hair? Yes that is AVA! Oh by the way Emeline is still complaining of a sore throat so tomorrow she will go back to the doctor. I don't think the Strep is gone! Now Lex she is doing much better!
Thanks again for the prayers.