So yesterday was never short of excitement. As soon as I woke and checked on Ava I was a little taken back by what looked like red blood coming out of her JP line. (The color was normally a pink, fleshy color.) I also noticed the bulb at the end that is used to hold the fluid was full of air. The fluid amount was a little less so that was good. I got 11 cc’s out on Thursday. That was total. I called the surgeons office and was quite surprised when Dr. Shilyanksy himself answered the phone. He said there could be lots of reasons for the color change. He was concerned that there might be an air leak. He told me to watch it for a few hours and call back. I knew with yesterday being Friday, if something needed to be done I needed to have her seen before the weekend. A few hours later the air leak was much faster. I would empty all air out and it would fill up in a matter of seconds. We could also hear a whistling sound near where the tube entered her skin.
I called back to his office and they told me to bring her up that they were going to do a CT scan and study of the drain. Well we headed up at about 2 pm. I needed a helped so Lexis volunteered. Ava didn’t seem the fact we were there. This time I decided not to tell her or talk about it in front of her. (Usually we say we have to visit the doctor but we will come right back home.) So they started the stomach barium through her g tube. I was confused because on the phone they told me they wanted to do the study through her JP drain to figure out what was going on…..I questioned them but they decided they wanted a full intestinal CT scan to see if there was any possible leakage of her small bowel and to see if the abcess was gone.
Here we are getting the stomach barium. We go extra slow for Ava as her tummy can’t hold large volumes at one time.
Then we had to wait to let the barium work its way down her tract. So a little after 5 pm they did the scan. I gave her a small dose of Ativan because she knew it was coming and was starting to cry. It helps to calm her down and luckily I still had some left over from last time she had her central line. They also gave her the vein dye to check all areas. I did stay with her and she did great. They sent Lexis behind the glass with them so she was able to see.
I took a few pictures in the scan room. After the test Lexis was able to come back in with us.
So the results were good. There is no leak in her small bowel and the fluid (abcess) is almost gone……there is still a tiny bit of fluid. I was a little upset that they decided not to do a drain study. (I thought that is the reason we came up there.) They did not want to take the drain out even though it no longer was able to hold suction. I had two options stay over night and do the drain test in the morning or take her back home and come back on Monday. (Actually Wednesday is our appointment but I may move it up…..I’m a tad bit worried about infection.) The decision was quite easy for me….we were going back home! I just don’t understand why we need to keep it if it is not sufficiently able to drain. They explained straight drain was still draining too. We have yet to get anymore to come out yet.
SO last night Valerie one of my fabulous internet friends and the one that made Ava’s gorgeous hospital gowns asked if the checked the bulb…..did IT have a leak? Huh so I thought I would investigate that today. There is always something with Ava. However she is feeling wonderful and so happy to be home. (Me too.)
Thanks again for continuing to help us pray for Ava. She keeps me on my feet…..always. We are finally settling into a routine and we pack her TPN (central line nutrients) in a small back pack and away she goes. I’ve had to explain to her several times, when she holds her line and shakes her head no to me when I hook her up……this was the trade off to not staying at the hospital. Now Mommy has to do all your care. She then lets me do what I need to do. I’m so thankful God made her a “go with the flow” type personality! He has the plan. I just follow!