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

We won the trifecta… if only it wasn’t for sinus infections. Lauren (who apparently has “crocodiles in her throat and butterflies in her ears” was her pediatrician’s official diagnosis, which she loved), Gavs, and I are all on some antibiotics to finally shake this forever cold. No wonder why it lingered for eternity (Jay gets to take care of us, poor guy).

We’ve had a lot of big changes so Jay and I have taken a mental sanity break (meaning we are a touch insane at the moment, because who wants to stay sane for too long). We have switched Gavin’s nephrologists (fancy word for kidney docs) and we are on a new machine which Jay and I despise. We look at his old machine with such affection. I wouldn’t be surprised if I would wake up one night and see the machine sleeping next to us in the bed (next to Lauren of course who always manages to tip toe in at some point in the night). We miss it so and it has only been two days. I am trying to get this new hospital to come around, so there is still hope. We will figure it out some way. I could get into the whole argument, but really it’s just too frustrating. I miss our old staff, you develop some unhealthy attachments to his doctors and nurses…so it has been a big change, a hard change, but a good change we believe.

Anyway, onto more important things…Gavin has a new accessory, his feeding tube. The down side is, well there are a lot especially because you can’t see all of his sweet little face, but the upside is that he doesn’t have to taste that yucky medicine so much throughout the day, and he doesn’t seem to mind it too much. I get to play doctor with the stethoscope to make sure the tube is in right three times a day, so he doesn’t drown by having food go into his lungs instead of his stomach—so that is pretty terrifying. Since he gets his supplemental feeds at night, it’s making sleep a little tougher. We have come full circle on his nutrition, so we will see if we start getting some weight gain. Although I wish he didn’t have to go through this, the feeding tube is a beautiful thing since it will get us to transplant hopefully sooner! He has totally fallen off the growth chart so it was time to intervene on his behalf. It’s a sad reminder of his illness. It’s so easy to imagine all this stuff away when you look at him…it just seems like he is so healthy, it’s such a mind game! Even Gray’s Anatomy hasn’t made me feel better this week, which usually cures all things bad in this world. McDreamy should be a nephrologist in Wisconsin.

Gavin is so active now, all squirmy wormy all over the place. He wants to be in it to win it and follows his sister like a hawk. Lauren on the other hand is following me like a hawk, so I try to keep my insane moments to a minimum around her because she just picks up on everything. Today I was ready to, well you don’t want to know what I really wanted to do to the blood pressure machine, and Lauren was telling her Grams about that naughty blood pressure machine later that night. Three year olds see and tell everything, it’s always interesting to hear what comes out of her mouth. Gavin, too, is very interested in all things that make noise. So it’s fun to watch his reactions now. You can so tell he is past the baby stage, and is into the toddler mind set. I can’t believe that he is going to be a year old soon. How we have been blessed, so many great things to come ahead as well!

Hope this finds you all well! Big Hugs and keep having fun! Once I find the camera I’ll post a picture of Gavs new accessory, but it’s MIA so here are some Christmas shots that got downloaded prior to its getting misplaced!

Jill

[mygal=gavin-christmas]