A sleepless night. Two days ago Gavin pulled out his feeding tube in the middle of the night so we were in the emergency room, (at 3 a.m. on country roads in the middle of the snow, ugh!) making sure he didn’t aspirate on it. He was fine— thank God, but now it has opened up a whole new fear of supplementing him at night. I am so exhausted that I am dizzy, yet I can’t sleep through all the alarms and added stress from all these changes and the fear of him drowning. Putting an ng tube in your own son is very scary and the cries don’t leave you, they just echo in your ears. It took me three times and with each attempt I hated my ineptness at being such a novice.

Lauren told me tonight that she didn’t want Gavin to be sick anymore. It was really hard since most of the time she doesn’t see him as “sick”, just her regular ol’ brother. With all the changes she knows that something isn’t right because now we are outside of what used to be the “norm” to her, plus a little insane and highly stressed. This disease makes me so mad at times. It’s like this abstract thing without a face that just keeps knocking you down and there is nobody that you can yell at or be mad at, it just is, and it doesn’t stop — you can’t fight it — just counter it and it never goes away. I can’t wait for transplant.

Madison feels like in not intervening sooner with the feeding tube that we are set back another six months from transplant, putting us not to transplant until this time next year. Although I will do this as long as we need to, the thought of Gavin being sick for another year and of all this is just so overwhelming — it was like a sucker punch to the face.

At this point I want to put out a shameless plug for all of you to become donors. There are 94,000 people waiting for transplant and only a little over 20,000 people get transplanted every year. These people on the list, they are someone’s mom, dad, child, brother, sister, wives and husbands. To learn more about becoming a donor go to wisdonornetwork.com or call the Wisconsin Donor Network at 414-805-2024. There are a lot of myths about being a donor and if you have any questions or fears they can answer them for you. Within the next six months they will begin testing me to make sure that I am a match for Gavin (we know that I am a blood match but Jay isn’t). I can’t wait, I’ve never wanted to lose an organ so bad. 🙂

Well I am going to try to get some sleep. We wanted to go to the Jim Gill concert this week, but I don’t think that Gavs will make it, there are a lot of funky winter cold things going around and that makes it really hard for Gavin to breathe against the fluid, but maybe Lauren will, she would LOVE it. We are still trying to find the fine line of living a life on dialysis with an immune compromised son! Hope this finds you all in better spirits than I, as they say this too shall pass!

Jill