Well Of Course...

Submitted by Colleen and Derrick on Sat, 06/20/2009 - 9:20am.

Daddy stayed with Devin last night and EVERYTHING was great.... they had a good night... disturbed a little to much.... for chest PT, meds, and blood draws.... this coming from the daddy that complained yesterday that respiratory was late for chest PT... I guess daddy only wants the service while he (daddy) is awake LOL!!!! and I sometimes wonder why Daddy always has "good" night never any problems.... I am starting to wonder if Daddy is just more of a sound sleeper????

Well todays plan is to drink and then if all goes well eat!!! He pooped very nicely last night and passed a lot of gas.. For those of you that think I am nuts writing about this, it's all very important.. it shows that the plumbing is working the way it is suppose to...

Fever gone, blood cultures negative, urine culture negative, and chest x-ray shows some left lower lobe atelectasis. Nothing a little chest PT and walking won't fix..

Slowly But Surely....

Submitted by Colleen and Derrick on Fri, 06/19/2009 - 1:50pm.

Devin had a little bit of a tough night!! He for whatever the reason just couldn't settle down to sleep.. We were having some blood pressure issues which required medication and vital every 5 minutes for 20 minutes then every 10 minutes for 20 minutes then 30 minutes later... When he finally went off it was about 1AM.. at 4 they came to draw his labs... he was a trooper! and by 5 we had a fever :( so.... blood cultures, chest x-ray, and urine culture were in the works... By the time he settled in again it was around 7 ish... which then was change of shift... by 8 surgery had popped in to see him then Dr.K and so on.... So at my request we had quiet time from 8:30 to 10:00.

NGT is OUT!!!!!!!!! HIP HIP Hurray... He got up and took a LONG!! walk... so long Derrick had to carry him back.. We did some deep breathing... and now it's nap time... his surgical site looks great...

Please say a pray that the fever is just a small bump due to surgery.....

Crabby.... But Who Can Blame Him!!!

Submitted by Colleen and Derrick on Thu, 06/18/2009 - 4:56pm.

Devin is NOT happy today... things are moving along rather smoothly.. he is up walking.. he pooped a little again... BUT he wants the tube out of his nose!!! He is absolutely miserable with it in. Surgery was here this morning and said tomorrow morning it can come out. He isn't really complaining of to much pain, his pain medication was switched to every 4 hours..

Slowly but surely he is improving! I think tomorrow will be a new day!!

This morning he had to have blood taken for the first time without a Central Line to get it out of... Daddy said all went smooth and he was very brave!!!

BREAKING NEWS....

Submitted by Colleen and Derrick on Wed, 06/17/2009 - 12:09pm.

DEVIN POOPED!!!!!!!!!!!!!!!!!! YES... OUT HIS BUTT.....

He Is Out...

Submitted by Colleen and Derrick on Wed, 06/17/2009 - 11:33am.

He is out of the OR... Everything went well... He is resting comfortable.... He is not very happy because he has a NGT (tube up his nose) draining his stomach, hopefully it will only need to be in 24-48 hrs....

OK... Drum Roll Please..... Devin is officially CENTRAL LINE FREE!!!!! this is the first time in his life... For those non medical readers this was the IV line that went into a large vein in his chest and delivered his IV nutrition.. Although the IV nutrition was stopped approx 2 weeks after transplant the line has been in place to draw his labs and just in case.. Well it gone!!!!

Oh Boy how far my little trooper has come!!!

OR....

Submitted by Colleen and Derrick on Tue, 06/16/2009 - 6:24pm.

Devin will be going to surgery tomorrow morning at 7:30... Surgery should take an hour and a half to three hours... Please keep him in your prayers....

* I will post again once he is out of surgery

Thank you all for all your love, support, and prayers!!

In The Hospital...

Submitted by Colleen and Derrick on Tue, 06/16/2009 - 12:42pm.

We were admitted to the hospital around noon... Devin is eating as though he is having his last meals... I took him out to breakfast... he enjoyed his ham, pancake, and sausage, he just had two hotdogs... and he is preparing for dinner already!!! That will be his last meal... they will start his IV fluids soon and his bowel prep shortly after dinner.. He is very anxious!!

I am praying that everything goes very smooth and things work as well after surgery as they did before...

In DC...

Submitted by Colleen and Derrick on Mon, 06/15/2009 - 8:02pm.

We arrived in DC last night for our 8am scope and biopsy today. We had a record fast scope today... Devin was a champ... and Dr. K was on a mission..
Everything looks great!! as per Dr. K... Labs were done.. results are in... everything looks good...

We are on track for admission tomorrow afternoon... They need to do a bowel prep to clean him out.... and give him a lot of fluids... Surgery will be Wednesday morning... GOD willing!!

Devin is very anxious!!! Needless to say his behavior is wearing me down. He has decided he'd like to keep the ostomy... between now and Wednesday the bribing will begin...

Highlights!! I just did hopefully my last ostomy change!! Hip Hip Hurray!!! and possibly my last central line dressing change... mixed emotions about that. That line is so dangerous for Devin to have yet it has kept him alive for 5 years... One Step At A Time.... One Day At A Time....

Please keep Devin in your prayers!!

Favor Needed...

Submitted by Colleen and Derrick on Wed, 06/10/2009 - 8:36am.

Today Devin's little friend from Georgetown, Thomas is going back to the OR. His transplanted organs are doing ok... but... Thomas is having some issues with vomiting and they need to figure out why??? Please pray for our little friend.. and his Mom... The ups and downs of transplant are so difficult to go through especially when you are so far from home!!

Tina, my thoughts and prayers are with you.. Can't wait to see you and Thomas next week!!

Not Much....

Submitted by Colleen and Derrick on Mon, 06/08/2009 - 7:42pm.

Not much to report these days... We have an appointment with our local GI doctor tomorrow.. who we love and are eternally greatful to... for her dedication and determination in the treatment and care of Devin both before transplant and after....

Devin is still an eating machine... To make you all laugh... sometimes the simplest things... last night one of the dads from Devin's class came to deliver a gift that the kids had got for Devin. It was a tray that goes over his lap... to color on, play on, and lean on.... ABSOLUTELY perfect for his next trip to the hospital... it is the perfect size.... he can use it in the car on the way to and from the hospital... and use it when he is stuck in bed at the hospital.... This morning he got up and of course looked for breakfast and announced.... "my friends got me a tray so you can serve me my food in bed"..... OH BOY!!! do we have some re-training to do... LOL

I am trying to prepare him for the take down of his ostomy next week.... he does not want "milk", which is the white medicine they use to put him to sleep... he is promising he will stay still while they do it.... poor thing!!... and he does not want anymore staples... he suggests some glue instead... I have my work cut out for me!! He wants to talk to Dr.Fishbien (one of the surgeons) I guess in his mind he has a say!! We'll see!!

To Washington & Back...

Submitted by Colleen and Derrick on Wed, 06/03/2009 - 9:29am.

We went down to DC and back in record time... No bumps or even pebbles in the road... Scope looked great! and biopsies where normal!! Grandma took the trip with us to hold Devin's hand for the procedure. Dad had to work. During the scope Devin was talking about the ham omelette he was going to have when it was done... LOL he is amazing!!

We are back in DC on the 14th for 7AM admission on the 15th... Plan 8AM scope/biopsy and then....... ostomy take down!! We will be in DC for 7 to 10 days...

So.... until then... hopefully things remain "Q----".... and we remain GERM!! free....

Congratulation's To The Class Of 2009!!

Submitted by Colleen and Derrick on Sat, 05/30/2009 - 11:48am.

I must take the time to say Congratulations To The Class of 2009... Many of the high schools here on Staten Island went above and beyond in helping raise money for Devin. These kids where amazing!! They took it upon themselves and came up with creative ideas to help raise money and raise awareness for organ donation.
Congratulations and Best of Luck on your future...

All Is Well...

Submitted by Colleen and Derrick on Sat, 05/30/2009 - 11:39am.

Not much to report lately... All has been Q----!!... but still Hectic!! The weather here in NY has been crazy!!! I am still trying to keep Devin germ free!! We've had a few cases of the flu in Caitlin's school, which as you can guess has me a little stressed!! Raymond is over his illness... He is in the height of high school baseball.... playoffs start tomorrow for the CITY CHAMPS!! from their we will jump right into his travel ball...

As for Devin... he started feeding therapy again this week.. the therapist he has, has been working with him since he is 14 months.... she has been through ALL his ups and downs... so it was very exciting for her to come and watch him eat... rice, sausage, and chicken... and swallow!! AMAZING!! She goes back to the days when you couldn't even touch his face! She said all in all he looks good... we need some work on lip strength and jaw movement.. anybody who knows him will find this hard to believe because.... he NEVER shuts up!!!! He talks every minute of the day... if his eyes are open his lips are in motion...

For the exciting news!! We are heading back to DC for a scope/biopsy on Monday... This is in preparation for his reversal on June 15th.... As long as this scope and the pre-surgery scope on the 15th look good... we will move forward with reversing the ostomy... This is one more step in the right direction.. yet I am very nervous... I will keep you posted as we go...
This is another reason why I am trying my hardest to keep him germ free.. any illness will be a set back...

"3" Months Ago Today....

Submitted by Colleen and Derrick on Sat, 05/23/2009 - 4:59pm.

Three months ago today.... Devin received his gift of life... I can not believe it has been three months already...

Devin is doing great!!! He is loving food... We have been through.... a few boxes of waffles, pounds of pasta salad, packages of hot dogs, ham eggs & toast, chinese, spanish, steak, pork chops, chicken, sausage, b-ziti(bake ziti), and the list goes on.....

His energy level is great!!

He is pain free.. No nausea.. No vomiting..

He is growing right before our eyes!!

God has truly blessed Devin with the opportunity to enjoy life...

Although we still have a long road ahead of us... We are enjoying every day..

To our precious little donor angel... May God rest their soul!!! You will forever be in our hearts!!

And to all of you... THANK YOU!!! for all the love and support...This has not been an easy journey.. but for those of you who have been with us since the beginning and see him now.... AMAZING... simply AMAZING....

**SEE BELOW FOR PICTURES FROM TODAY**

I'm Not Bragging.....

Submitted by Colleen and Derrick on Wed, 05/20/2009 - 7:05am.

But I am VERY PROUD!!!! of my little trooper.... His hard work and determination has paid off..... If all remains status quo... we do not have to go back to Georgetown for.. shhhhh...... a month!! Yes!! one month!! This is so exciting and such good news!! But... I don't want to get ahead of myself... one day at a time.... one step at a time.... We are also going to weekly labs.... All steps in the right direction!!
Probably in the next week or two they will be letting me know about reversing his ostomy. I have started to prepare Devin... He is excited about pooping the right way... But I don't think he is grasping what he will go through to make it happen. This will require a 4-10 day stay in the hospital... a trip back to the OR.... which Devin HATES!!!!!! even the site of the OR doors make him FREAK out.... unfortunately he is allergic to the medication they usually use to help kids with the transition away from mom and into the OR... :( This is NEVER pleasant... We will get through this though!! The sooner the better... It will allow for Devin to have a NORMAL summer, be retrained and work through any bathroom issues in time for school, and get over the entire experience and adjust to life before school starts in September... Keep in mind he is a 5 year old boy who has lived his entire life with sickness, hospitals, Dr's, test after test, labs, pain, vomiting, and hard times!! It is now time for Devin to be 5!!! We Thank God for this summer... and want to take advantage of every moment of it....

***********FUN SUMMER DAYS AHEAD************

PS..... GERMS.... Raymond is sick :( I feel terrible because he MUST stay in his bedroom and the family room... and Devin is isolated to my bedroom, his bedroom, and the living room... Raymond has a fever, very bad cold, and body aches!! We went to the Dr yesterday... he does not have strep throat or the flu (they tested).... Hopeful today he will feel better.... Clorox and Lysol have become the new perfume in my house.. Every bed got Lysol and linen change.... I even cleaned my washer!! Just Incase!!!

Scope And Biopsy Done...

Submitted by Colleen and Derrick on Mon, 05/18/2009 - 9:19am.

We are here in DC for our routine visit... His scope/biopsy are done... Dr. K says it looks beautiful to the eye... LOL Plenty of good poop!! Yes! once you have a intestinal transplant poop becomes the highlight of your day..
and being able to eat and have good poop is like winning the lotto...
So.... all is well here Devin just started his Cytogam infusion then he'll get his Pentamidine.... and then we're out of here!!!

Exciting news... Dr. K says if all looks good on the biopsy they will discuss closing the ostomy in June.... Lets pray!! This way Devin can have a normal summer and enjoy all the fun that summer brings... He truly deserves it!!

Back To DC Tomorrow...

Submitted by Colleen and Derrick on Sat, 05/16/2009 - 3:47pm.

Tomorrow we will head back to DC for our Dr's visit Monday... It will be a long day... scope/biopsy, Cytogam, and Pentamidine... God willing all will go smoothly!!! :)

Yesterday...

Submitted by Colleen and Derrick on Wed, 05/13/2009 - 8:01am.

Yesterday Devin said the most interesting thing.... as he stood up from eating his 3rd bowl of Spanish Rice and Chicken... he said
I LOVE MY NEW BELLY.... in which I replied you do... how about your old one?? he said.... NO I HATED THAT ONE... IT MADE ME FEEL HORRIBLE!!
I am starting to believe Devin really felt worse then any of us realized. The other day we were talking about drinking enough fluid... so we touched upon drinking enough because he no long gets his IV nutrition (TPN).... which kept him alive for five years!! He said... I never want that stuff again... it makes you feel terrible... Who would have known! Surely nobody that saw him everyday... he was up and on the move.... full of life.... rarely complained... and always raring to go!!!

Since his transplant he is like a new kid.... He is growing and gaining weight.... his teeth which had fallen out early are growing in.... his nails and hair can be cut on a weekly basis.... he is speaking clearer.... eating like a pro.... sleeping soundly..... and interested in school work.... he has become obsessed with brushing his teeth, which use to cause gagging and vomiting.... he is even taking his meds by mouth... he is MUCH MORE SETTLED!!!!

Who would have thought.... that this transplant could impact his life in so many areas.... He is now truly living like a "NORMAL" five year old....