Despite a HORRIBLE lab experience, todays clinic visit was overall very good. Our favorite dr, dr mistry, was on today so it was nice to chat about Damiens care without him being tethered to a machine. She was as happy as could be and noted several times how good he looks. His energy is up, his color has improved, hes beginning to show a (slight) interest in food, his kidney numbers are as close to perfect as can be hoped for and hes even gained some true weight. (As opposed to water weight) and is tolerating the gtube feeds perfectly:) All Damiens life hes struggled with dismotility (food doesnt move properly through intestinal tract) and because his body digests foods so slowly his tummy is never empty which caused severe nausea and vomiting. To fix that he was given a jtube so everything bypasses stomach n goes directly into intestine. It worked and allowed damien to keep his feeds down and gain some weight, however the intestine doesnt stretch like the stomach so it can only handle very small amounts at a time. The only hope we had of getting Damien off his milk pump all day (continuous feeds) was to either get him to eat normally 3 meals/day or get him to tolerate gtube feeds (goes into stomach) and slowly work on increasing amount he gets/hr while simultaneously decreasing how many hrs hes on the pump/day. Right now hes getting 42 mL/hr for 17 hrs/day but its in the G, NOT the J. I can tell you 100% beyond a shadow of a doubt this happened because he has a working kidney and out of Gods loving grace. Well today I dared mention bolus feeds and *drum roll please*...we are starting SLOWLY to proceed in that direction. We will now do continuous feeds for 10 hrs overnight and supplement these with 3-100 mL bolus feeds delivered over 2 hrs. Its going to mean a LOT more work as I will need to turn the pump off at 7 am, disconnect damien, reprogram pump to deliver 50 mL/hr, turn it on again at 9 am and run it until 11, turn it off again for 2 hrs and restart it at 1 pm until 3, disconnect, turn it back on from 5-7, disconnect until 9 then reprogram it to our original 42 mL/hr and run straight until 7 am when I will do it all again. Like I said, its a TON more work but I willingly and very happily accept this because little by little we will decrease the length of time each bolus is delivered over until were down to 3-4 feeds that take maybe 15-20 minutes each. This means WAY less time for Damien tethered to the pump and will give him SO much more freedom. Freedom to crawl, freedom to stand, freedom to climb, freedom to try to walk- freedom to BE A KID. Baby steps but oh such precious and joyous ones and ALL because of organ donation!!! For those who are unsure about donating and asking if it really makes a difference since its not a cure, I encourage you to stay tuned because exciting things are happening here at dreams for Damien. Thank you over and over again donor family and to God be ALL the glory!!! Definitely doing the happy dance tonight!
Posted on: Wed, 03 Dec 2014 03:08:40 +0000