Two Months Ago Today....

Submitted by Colleen and Derrick on Thu, 04/23/2009 - 1:41pm.

Two months ago today Devin received a second chance at life... Over the course of the last two months I have learned so much... One persons random act of kindness, saved Devins life.. We came to Georgetown knowing very few people and not knowing what to expect... and left knowing a group of very caring people.... nurses, staff, and doctors who walked this journey with us every step of the way.... My family, friends, and complete strangers have been amazing!!! So many people reaching out with kind words, thoughts, and prayers.... In this crazy world we live in.... Their are a lot of good people left... and what is even nicer... their are no boundaries... all ages, races, and religions have joined together to cheer him on.... I can not tell you the amount of kindness and caring that Devin has received.... To mention one thing.... we received a hand made quilt... each square was made by a different person from all over the United States... and each square has a sports theme, Devins favorite... It is gorgeous!!! but what makes it really special and amazing is it was sent by complete strangers!!

So, I have learned that random acts of kindness whether it be from someone you know or a stranger... truly makes a difference!!! Soo... In honor of Devin today do something nice for someone :) !!

One Step Forward..

Submitted by Colleen and Derrick on Wed, 04/22/2009 - 7:44pm.

Devin's fever broke... We are anxiously awaiting his blood culture results, should be in the morning.. If the culture is positive regardless of the organism I believe the plan will be to pull the line.. Oh boy, another step where medication for mom might be helpful..... LOL!!! This truly has been Devin's life line since birth.. Although his line has caused us some heartache.. it has kept Devin alive.. It is a security blanket for me... I know if my little man gets in trouble we have easy access..

**** Two months ago today we received Devins life changing phone call****

Well Well.. Where To Start...

Submitted by Colleen and Derrick on Wed, 04/22/2009 - 2:33pm.

Biopsy # 10 was completely normal.. Thank God!!! Yesterday was a big day.. We started to bolus feed Devin... For all the non-medical readers... Devin was being fed 18 hrs a day continuously.. Yesterday we gave him 180cc over 30 min 5 times during the day.. Then we ran the remainder of his feeds between 11 pm and 6 am... Devin was so happy!! he was free!!! He was so cute when I put him to bed last night he said "can you teach daddy how to feed me like this, so I don't have to wear my pump" He had a good day... tolerated feeds with no increase in output, ate great, and took a good amount of G2 by mouth... He only had one complaint, pain in his drain site which also was leaking. I noticed that he was a little quieter... But he had been through a lot on Monday. A trip to DC, sedation for biopsy, and an allergic reaction to Cytogam.. Who wouldn't be tired???

Well at midnight last night the sweet little voice laying next to me said "mom I have a fever" Oh boy you do... 102.3.... So I immediately called the transplant center who said "bring him in" Off to DC again... Derrick had just walked in from work... We were on the road by 1:30 and in the ER by 5:00am.. They have run all his labs, cultured his central line, urine, stool, and have started antibiotics. At this point he still has a fever and is complaining of a headache, he spends most of the time sleeping.... He is still tolerating his feeds and has no complaint of belly pain and no increase in output.. Thank God!! All things considered things are leaning towards an infection in his central line.. Time will tell... we should have culture results tomorrow morning.

Please pray that this will resolve without any transplant issues...

Back In Georgetown Today...

Submitted by Colleen and Derrick on Mon, 04/20/2009 - 9:48am.

We headed back to DC last night for our day in the hospital today...
Biopsy # 10 is done already.. Dr. K is very pleased, says it looks great... We should have the official reading tomorrow. Labs are done, just waiting for results.. Cytogam started at 10 should be done by 1 and then Pentamadine should be done by 2.. God willing we will be out of here by 3...

Devin had a wonderful week and a half at home.. Getting back in the swing of things was exhausting (for me) Devin didn't miss a beat! He was having fun riding his bike, playing baseball, basketball, and walking the dog... The poor dog... if it survives Devin he'll be lucky... He is going to be the toughest 5 pound dog around.

Hope everyone enjoyed the Nightline documentary.. Poor Devin cried through it. I am not sure why, he just got so upset.

It was great seeing everyone here today.. Of course Mr. Crabs was crabby!! Growling at everyone!! Telling everyone he's only staying a little while... as though anybody wants to keep him here...

Just In Case...

Submitted by Colleen and Derrick on Sat, 04/18/2009 - 8:14pm.

Just in case you missed Nightline... these are the links below... CHECK IT OUT!!!!!

http://abcnews.go.com/Video/playerIndex?id=7367988

http://abcnews.go.com/Video/playerIndex?id=7368038

Nightline...

Submitted by Colleen and Derrick on Fri, 04/17/2009 - 9:29am.

So far tonight is the night... You can check out Nightlines web site to see some of Devin's story.... It is 4 pages... Check it out!! http://abcnews.go.com/Health/Story?id=7356063&page=1

Reset Those DVR's....

Submitted by Colleen and Derrick on Wed, 04/15/2009 - 7:08pm.

Nightline has been changed until Friday night... 4/17..
Again this could change so please!! check back... I will post any changes ASAP.. Thanks!!!

Doing Great....

Submitted by Colleen and Derrick on Tue, 04/14/2009 - 10:29am.

So far, so good!!! Devin is doing wonderful!! He is eating great! Drinking ok! and being a BRAT... perfectly!!!. Yes, yesterday did start Devin Boot Camp... and yes he was punished for the afternoon... He was so bad at the doctors! Fresh, fresh, fresh!!!!
We returned to our GI Dr here in NJ.. It was GREAT seeing everybody... The amazing team work of this Dr and the nutritionist kept Devin going strong until transplant.. It was so touching to see everyone from the woman who check us in, to the ones that take his vitals, the entire staff!!! played a major roll in getting Devin to transplant. So yesterday was an exciting day for us as we reconnected with this great group of people!!. The Dr came in and said, "so Devin what is new... we haven't seen you and we missed you" He proceeded to say " well, I went to Georgetown and got a bowel transplant, a drain, staples but they took those out, and an ostomy that poop comes out of" It was so funny to hear him say this as though he went to Target to pick it all up... Being 5 and innocent has brought him a long way... She asked him if he still has pain like before... he said no, just where the drain is... OH music to my ears!!!! He gained more weight and grew a little.. we are waiting for our lab results... Which I must admit I was a little nervous using a new lab... while it's not new just the first time since transplant...