Things have been a bit nuts and when I have been home I have done nothing but sleep. So lets start with Friday.... We got to the hospital at 7:15 to go to the contrast study by 7:45am. Caleigh's stomach was huge and her stomach drainage was a terrible green color. She was crying, unhappy and wasn't about to cooperate so we gave her some versed to help calm her down. We finally made it to the contrast study over at Cooks by 8:15am. They injected the contrast through her G-button and the contrast just started oozing out of the hole around her button. So it didn't make the pictures easy to see because there was contrast everywhere and not just in her bowels. After a lot of contrast and several x-rays, we were sent out in the hall to let everything travel through. About 15 min later we went back in and took more pics and then we were sent back out again. Same thing again and then we went back to Harris. After several more bedside x-rays everything went through Caleigh's system by 1:30pm. Not to bad. 5 hrs. There are 2 dilated loops of bowel that everything gets 'hung' up in. Those sections aren't doing the necessary pulsating that they are supposed to, which leads us to the issue of motility. The formula slowly builds up and creates bacteria from the areas being stagnate. This is why we only make it a few weeks of eating at a time. Ok, so that was exactly what we thought was going on, but needed to be confirmed. What's the cure? Try to find a balance, try to feed again, try, try again.
I stopped for a break around 3 to go eat lunch with one of our favorite nurses, Kenzi.
When the GI doc had been by that morning I told him that Caleigh's stool had this crazy acid, bloody smell to it. So he sent off a sample and sure enough it came back as positive for blood. A little discerning but probably normal due to all the irritation of her belly swelling up. In the mean time Caleigh's G-button looked horrible. It was raised above the skin, high, and it was terribly red and irritated. Caleigh's doc called for the surgeon to come look at it. The surgeon called a ET nurse (wound care nurse) to come look at it to. She showed up the same time as the surgeon. Dr. Vaughn took one look and a couple of painful tugs at it and decided that Caleigh needed a new button. I'm just going to interject here, Caleigh's diaper leaked all over me.... So then he started naming off things that he needed, to perform this task at Caleigh's bedside. Just like on TV I swear! He suggested I leave the room......uhhhhh...yeah...ya think! We gave her some morphine, he went to Cooks to get a new button and some supplies......ladi ladi da...30 min later Caleigh had a new button. She got a
button which should be easier to replace if need be. His thoughts were that she had pulled and tugged at it so much that it was half in the stomach and half out of the stomach. She knows exactly where that button is and if she is undressed you can be sure that she will grab at it. When we fed her or her gastric juices were coming out of the hole; the liquid was getting into the surrounding skin tissue and causing the irritation and causing the new bloodly stools. So after a few more calls we were off to Cooks again for another contrast study at about 5:30pm. Dr. Vaughn wanted this one to make sure that the button was in place and not leaking out of the stomach into the abdomen. There was a little leakage outside of the button onto the skin, but nothing like before and everything looked good inside. Back to Harris we went........ I eventually went home and slept, Eric went up and sat with Caleigh most of the night.
longest post ever continues on.....
Yesterday, Saturday, Caleigh was doing better. Her G-button was set to suction and it was pulling a lot of the old blood out of her stomach. That afternoon we switched it to gravity and we will probably start small feeds again in the next couple of days. The button is leaking a yellow, oily type of secretion, but I think that is just her body trying to heal. Caleigh's bloodwork had come back with some elevated white blood counts, a few days ago, which indicates infection, but at 48 hrs nothing had grown on the cultures so they have stopped the antibotics. They are replacing the fluids that Caleigh is putting out with the suction and by gravity with Saline so that she doesn't get dehydrated. So she is a bit swollen right now to. We are still cycling her TPN off, but only for 3 hrs a day while she isn't eating. Her belly looked better, softer and more comfortable.
Today, Sunday, hmmmm I'm on my way up to the hospital. She seems to be doing better each day since we stopped feeds, which is exactly how she reacts every time. Happier without food....that's our little girl.
So needless to say, we are exhausted. Hopeful, optimistic but exhausted. Just when we get our hopes up this always happens. It's ok to get our spirits high in hopes of Caleigh coming home because that is what gets us through the weeks in between. So maybe this next time will be the ticket home we are hoping for.