G-tube, broviac, central line...etc

Whatever you want to call it, its certainly a lot of work! We've been learning how to give Gavin his lipids (ie: fat) through his line. There are so many steps! The first night I admit, I was biting back the tears. (I DID NOT SIGN UP FOR THIS!) It was pretty overwhelming. It took over an hour to go through everything with the home health nurse. The next night was a little faster. The third night we were all on our own! And the last two nights only took about 30 minutes.

I'm still freaked out we're going to screw up and forget a step and kill him! You have to make sure there's no air bubbles in the syringes, tubes, etc. Then, the Vit K comes in a glass vial that you snap in half to open. You have to switch to a filter needle before you inject it into the lipids bag to filter out any glass bits that might be in it!!! Plus, its super easy for him to get an infection through the open line while its unclamped and everything going into it. We have to be really careful about cleaning our hands, and cleaning the ports before putting anything in, and not touching the end of the tubes, etc. But logically I know that within a week or two we'll be doing it with our eyes closed, no biggie. (at least thats what I'm hoping...)

The lipids run for 10 hours throughout the night, then we have to make sure to flush the line with saline solution, then heparin to keep it clean and flowing. It seems to be working really well already, he definitely FEELS heavier!!! Also his albumin levels went WAY up (albumin levels indicate how much nutrition you are getting out of your food) so that is a "good" thing. It does lower his PELD score though, putting him lower on the list...but I'm not too worried about it. I think he needs a little extra time to gain some weight, and so far he hasn't had any problems (knocks on wood!!!)

We're going to UCLA again next week so they'll check him out then, and we'll also be starting the work-up on Andre in case they want to use him as a live donor.