One Month Ago Today....

Submitted by Colleen and Derrick on Mon, 03/23/2009 - 2:30pm.

Who would have believed...... in one month Devin would have come soooo far.. He is doing great!! We had our first check-up today and they were very pleased with everything. Devin is tolerating his feeds! He is getting about 2420cc or almost 81oz of formula and water through his feeding tube and drinking anywhere from 150 to 300 cc (5 - 10 oz) of G2 or Propel. This is the boy who couldn't handle anything through his feeding tube, and drinking by mouth use to cause belly pain. Unfortunately when it comes to eating, he wants what he wants... Wonton soup, McDonalds french fries, and toast loaded with butter... He is suppose to be eating a low!! fat diet... So needless to say eating is not going as well as drinking.. The goal is 5 pieces or 5 spoons full of whatever I've made for him... Baked chicken, plain pasta, mash potatos, far cry from what he wants!! LOL
This morning Devin was given his last does of antibiotic through his central line.... So tonight will be the first time in five years that he will not get anything through his line.... This is a HUGE accomplishment... First no TPN (IV nutrition) and now nothing... oh boy!!
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Well, a month ago today Devin was given a precious gift... The Gift Of Life... We will forever be greatful to our little donor angel! Who will always be a part of Devin... May this little angel rest in peace..

Quiet Day....

Submitted by Colleen and Derrick on Tue, 03/24/2009 - 4:51pm.

Just hanging out playing today... It's a little cool here, so we've just been hanging around in the apartment coloring, playing baseball, watching TV, and playing gameboy... Hoping for nice warm weather so Devin can get out and get fresh air. We are very limited in where we can go and what we can do because of his immune suppression.

Still handling his feeds well! Drinking plenty... Still working on the eating...

One Day At A Time!!

Breakfast In Bed....

Submitted by Colleen and Derrick on Wed, 03/25/2009 - 11:17am.

Oh what a treat... Daddy made Devin breakfast in bed... After a great night of sleep, Devin got up today at 10:30.. He claimed he was starving ~~music to our ears~~ He requested toast and eggs... He must have really been starving, he ate a slice of toast and half an egg.. and loved every bit of it...

We are just hanging around today.. I found my camera so I will post some new pictures today.. He is amazing!! He looks great and has as much energy as he did before. He claims he feels better... Thank God, I can't imagine putting him through all of this to feel worse. He has no complaints of belly pain.. His biggest complaint is the drains he has in. I think they are uncomfortable. He does not even complain about the 30-35 staples he has going straight down his stomach.. and he has been a great sport about the ostomy.

Biopsy #7 is tomorrow morning... along with some labs...they may also take out one drain and maybe the staples.. We are do to see the Dr after the biopsy..

Meds and feeds going well.. Still haven't come up with a way to keep track of the meds that meets my OCD needs... I really need a few med Kardex... this way Derrick can sign off when he's given a med... Yes! I am a med nut!! Right now I have sheets of paper taped to the refrig. the times are color coded with highlighters.. but their is no room to sign... I thought of making a new set for everyday this way we can check when they are given.. I know many of you are LOL!!! This is all I have left to control... LOL Seriously their are alot of meds!! At 8AM we give 11... plus STRICT measuring of what he takes in and puts out... Oh well I am sure I gave many of you a good laugh... :)