A mess

The waitress at dinner tonight asked us if we were celebrating anything, we said "we made it through the week."

Today Jillian needed to give us a little more excitement. Apparently choking on flem and stop breathing for several seconds is not enough for a week. 

Yesterday Jillian had a really tiny streak of blood in her g bag. This morning there was more. I was hoping it would magically disappear (although I knew it would not). 

While I was teaching my boss came into my classroom with Jillian. She said that there was a problem. I went over to jilli. My boss said jilli was complaining that her tummy hurt and that her belt was wet. Mind you her belt is made of thick flannel and cotton so it takes a good amount of liquid to go through it. The whole front area that opens was wet. I opened it to look at her tube. Her g port was open. 

See when they place a GJ tube there is an anti reflux valve. This velve makes it so that if the plug comes out of the tube that it will not pour liquid out. When you put an extention set in it opens the valve. After several months of having extention sets going in and out the anti reflux valve gets stuck open. Jillian goes to get her tube changed next Friday. (They get changed every 3 months)

Well today somehow the plug came open on the g port and without the anti reflux valve working that left her stomach contents to free flow out of her tube. 

Flowing tummy juice is annoying but not a huge deal. The problem was that in the Velcro you could clearly pick out blood. It was not dry and flakey nor was it bright red and watery. It was kinda inbetween. In the belt you could see that the amount of blood was more then before. This meant that somewhere in her stomach was bleeding. 

I called gj and left a message. Our nurse called us back and said that we needs to start her on a drug that will stop the bleed. The med needs to be given every 6hours and has to be given an hour before/after any other medication that goes into her mouth (she takes erythro by mouth every 8hr and lanzop twice a day by mouth) thankfully for her we don't have to work around when she has food going into her stomach. This med needs to be given for for 10 days but thankfully should take care of it. (Yes this does mean that we have to fill her bag at 10pm and give erythro, new med at 11pm, refill/check breathing at 2am, new med at 5am, and fill bag at 6am, we apologize now if we are crabbier then normal the next 10 days, we will try hard not to be) 

Then as I was taking care of this she started to get clammy. I was unsure what that meant. She then fell asleep and took a good nap for almost 2 hours. That is unlike her. After she woke up she was more like herself. 

I am just thankful that we have a way that should be able to treat it. I'm thankful that she is complaining less about her tummy hurting tonight. 

While weeks like this are hard and long they make us stronger. They point us back to Him. It's been a long week, but although very tired tonight we are grateful for the people who have stood along us this week. 

Please be in thoughts of our family tomorrow as we say goodbye to my great aunt. It has been hard on everyone in the past month scince she was diagnosed with cancer. While our family may be large, we are close. We are family. For our family great aunts/uncles are not some distant people, but a part of each other's lives. Some of the people who understand our struggles with Jillian health best and lift us up are my "extended" family that does not feel "extended" to me, but close. Tomorrow we join to celebrate the life of a person who is one of us. 

Jillian yesterday with her balloons from her birthday. They are hitting that point where they no longer float but she still loves them. 

Jilli reading with her aunt Jaime last night. I am SO grateful to have such an amazing woman in my life and in Jillian's life. We are truely blessed. Jilli got to teach uncle Jason a new game last night. She was do excited.