Not Bouncing As Fast...

Submitted by Colleen and Derrick on Thu, 04/30/2009 - 8:03am.

We are home and settled.. But Devin doesn't seem to be bouncing back as fast.. As I said before... we made so many changes while we were there and the emotional stress of having the drain pulled a little every day I think has taken its toll on Mr Crabs!! He is giving me a hard time about eating, drinking, getting his feeds, and taking his meds... he is a miserable grumpy soul!!! So... we took a few steps forward and now a few back... Today the IV antibiotics are finished so I hope and pray all remains quiet!! and maybe he will have less output and take more in... Who knows?????

Swine Flu is not helping the situation.... I have isolated Devin to the house and out in the open air... he spends most of his day in front of a TV with his PSP... I will not even let him wear a mask and go into places... I don't trust the mask!! LOL.... I am paranoid that Raymond or Caitlin will bring it home from school.... Just my luck... we live in the state with the most reported cases, beside Mexico... Honestly, it is very scary!! for everyone, but for an immune suppressed child it is extremely scary... So remember this friendly reminder from your germ-a-phobic friend.... WASH YOUR HANDS!!! cover your mouth if you cough and your nose if you sneeze... and then WASH YOUR HANDS AGAIN.... And to top it off I am going to get the reputation of a b--ch... Every one who sees him of course comes right over.... and I have to say... "please! don't touch him, please don't hug him, please don't kiss him, and please don't ask him to slap you five" People look at me like I am crazy... I want to get him a tee shirt that says "look but don't touch" Oh well this to shall pass!:)

HOME AT LAST!!!!!

Submitted by Colleen and Derrick on Mon, 04/27/2009 - 4:59pm.

Long Weekend!!! We were discharged on Saturday at 3:30, after they pulled the drain back a little... But.... we needed to be in clinic this morning... so Derrick took Amtrak home to get all the supplies we needed IV antibiotics, anti-rejection drugs, and so on... I packed for a short stay... foolish on my part... but I guess I should chalk it up to a learning experience...

Thank God!! Dr. Fishbien pulled the drain today.... Hip Hip Hurray!! 72 hrs of IV antibiotics and then we should be good... A lot of positive changes during this hospitalization and steps in the right direction..... so we will take the good with the bad... Devin is exhausted today and very crabby!!

Back to DC, Sunday for biopsy, cytogam, and Dr's visit Monday...

I-95 has become our home away from home...

The most exciting news in Devin's world... Dr. Fishbien said he can play
t-ball. As many of you know Devin's world revolves around baseball...

Mothers NOT Happy....

Submitted by Colleen and Derrick on Sat, 04/25/2009 - 9:11am.

At about 7 last night we realized that no one from the surgical team was coming... Around 7:45 the nurse came in and said surgery would be here in the morning... Oh boy!! to say I was mad.. the poor nurse... She said the plan was to pull it a little more today, and out tomorrow... So this means home Sunday or Monday... Well I freaked!! and Derrick has steam coming out of his ears... as many of you know "the glare" So.... Mrs. Germ a phobia is now stuck in the hospital with an immune suppressed 5 year old boy... who has not had a fever since 12 hrs after we arrived... has absolutely NO desire to stay in his room and has made friends with this cute boy across the way that he doesn't understand why he can't play with... Needless to say we spent a great deal of time outside yesterday... In the fresh germ free air!! and the same will happen again today..... :)!! Line cultures remain negative!!!
They claim it is not uncommon for immune suppressed kids to run fevers...

They good thing that has come out of this hospitalization.... Devin's been fine tuned... feeds have been changed around... meds have been cut back... and he is still doing GREAT!!!

Take The Good With The Bad...

Submitted by Colleen and Derrick on Fri, 04/24/2009 - 5:25pm.

It doesn't look very promising for going home today :( We are still waiting to see the surgical team... They are in a transplant :) ! We are not sure if the drain will be removed tonight or pulled out a little further.. Devin is doing great.. His only complaint is drain pain... He is tolerating the next step in formula which is Elo-care, this is great! They are changing from every 3 hour feeds to every 5... and they have been able to cut back on some more of his meds.. All VERY positive things...
We got to go out and enjoy the beautiful day here in DC.. It was a little difficult getting him to come back in... :(

Hopefully tomorrow will be the day..

Ok.... The Word Today....

Submitted by Colleen and Derrick on Thu, 04/23/2009 - 3:18pm.

Devin's blood cultures are NEGATIVE!! Thank you God!! They pulled the drain half way out... He's not happy!!! As of right now no one is really sure where the fever came from... That's ok with me... he's been fever free for 24hrs, he is tolerating his feeds great, he is eating good, and his output is good.... The true sign he's fine, Mr Crabs has returned!!! He wants to go home, NOW!!! Dr. K says in the next day or two... Lets hope it's tomorrow so we can enjoy this beautiful weekend....

Thanks for the prayers :)