OOOO... My Life...

Submitted by Colleen and Derrick on Wed, 11/11/2009 - 5:29pm.

We are home once again... Devin seems to have made a full recovery. He will stay on Tamaflu for 10 days this time instead of the standard, which is 5...

The kicker of the day.... Derrick is sick in bed.. fever, chills, cough, shortness of breath, just plain miserable... He went today and was tested for the flu and started on Tamaflu too. It is very important that we know what he has because of Devin. If it is the flu Devin needs to be isolated from him for 5 days... if it is not then he must be isolated from him for 7 days. SOOOO, we are living with grandma for the week!!

CAN'T WAIT FOR SUMMER!!!! It's going to be a LONG WINTER!!!!!!

Moving In The Right Direction...

Submitted by Colleen and Derrick on Tue, 11/10/2009 - 11:37am.

We had a good night last night… (of course daddy stayed) No fever since last evening… still has bad cough and is weak… we are waiting for the results of his chest x-ray and blood work… he looks MUCH better!!
Mr. Crabs has returned!!! He is being bossy and nasty all in one!! He loves telling the nurses what to do and how to do it… Great to be 6 and know everything.. He is out of bed in a chair and not really liking me for it.. next step is to walk.. Laying in bed will only complicate things.. He needs to move and do some deep breathing!
He is looking for a new mother.. LOL!! Any takers, because I could use a vacation..

Just A Quick Update...

Submitted by Colleen and Derrick on Mon, 11/09/2009 - 8:19pm.

Devin is still running a fever, complaining of a headache, and feeling miserable. The infectious disease doctor was in today and feels this is a new illness... most like unrelated to the last one. It is really a wait and see type of thing... If he continues to run a fever it will be more concerning.. In the morning they will repeat labs and do a chest x-ray.. The doctors from Georgetown mentioned doing a bronchoscopy if things don't improve.. or IF he starts to require oxygen.. They are also concerned that it may be adnovirus.. which is a bad virus for transplant patients.. Only time will tell what path this illness will take. All we can do is pray!!

Who Would Have Thought...

Submitted by Colleen and Derrick on Mon, 11/09/2009 - 9:44am.

That 4 weeks ago to the day we would be sitting were it all began... Thank God!! He is NOT as sick and God willing will remain that way.. 4 weeks ago he came in to the hospital with the same syptoms and within hours was placed on a ventilator.... spent 72hrs fighting for his life.... and 1 week on the ventilator... He by the grace of God pulled through and made a full recovery... He was diagnosed with pneumonia, RSV, and the flu... Well here we are 4 weeks later.... in the hospital being closely monitored... diagnosed once again with the flu...
The doctors here at Robert Wood Johnson and Georetown have worked together to come up with a plan of care... hopefully Devin's little lungs can make it through this without requiring any support...

Today.. they will continue to monitor him closely and try to balance his immune suppression so he doesn't reject his intestines or get sicker!! Their is a fine line...

Thank You all again for your continued love, support, and prayers!!!

Prayers Again...

Submitted by Colleen and Derrick on Sun, 11/08/2009 - 9:53pm.

Devin is back in the hospital again. He got up this morning with a cough and soon had a fever of 101. After talking to the transplant center they said to get him to the ER ASAP.

We are in the PICU at Robert Wood Johnson... His temp. is 102.7.. They are running test and watching him closely.

Pray for a quiet night and a speedy recovery.

Just To Make You Laugh...

Submitted by Colleen and Derrick on Tue, 11/03/2009 - 11:39am.

For those of you that know Devin this will make you chuckle.... As of
Oct. 26, Caitlin was no longer eligible for bus service to and from school because we live 1.43 miles. You must live greater then 1.5! This worked out great for me because Devin loved the bus but once he returned to school I didn't want to put him on it to aviod exposure to germs. Yesterday he had a GREAT !!! first day back. When he came out he informed me that I no longer have to pick him up. So once again I explained how he can no longer take the bus because rules changed so he is no longer eligible. Blame the school!!! LOL!! When in his cute little innocent voice he said,
"No mom.... Mrs. D said, Devin you are now a walker... so me and Michael T are going to walk home from school everyday" Keep in mind Michael T is in kindergarten too.. So as he got out of the car this AM he reminded me again "Mom don't forget I am a walker" even though I gave him a BIG talk on how it would not be safe for him to walk home alone.... and he could get hit by a car... meet strange people who might not be nice... and someone might call the cops on me. Apparently it went in one ear and out the other.... So... I better NEVER be late for pick-up!!!!

Hi Ho... Hi Ho... It's Off To School....

Submitted by Colleen and Derrick on Mon, 11/02/2009 - 10:00am.

He'll go!! Today Devin returned to school!! He was up at 6:45 eagerly awaiting the moment. He jumped around the kitchen and tortured the dog as I made lunch. He was very excited to get their... and barely said "bye" at the door. I am expecting an ugly afternoon. He is going to be very tired!!!

Good Doctors Visit Today...

Submitted by Colleen and Derrick on Thu, 10/29/2009 - 3:17pm.

We had a good doctors visit today. His weight held steady so we are going to cut back on some of the calories in his formula so that hopefully he will start eating again.. He seems to feel good!

To answer the Million Dollar Question... YES!! Devin WILL return to school!! Their is no easy answer... their is no right or wrong... so I have to do what I feel is best for "Devin"... Devin absolutley loves school, he loves his classmates, he loves to learn, and he loves the socialization.. In the week we have been home I have come to realize.... being home is sad for him.. He goes from his bed, to my bed, and to the coach. He plays PSP, watches TV, and his DVD's. What good will come out of this long term?? Although I'd like to put him in a bubble with fresh air... what good will this do??? I have two other children... who have friends... I have a husband that works long hours around sick children.... So, to isolate him it would mean.... staying away from Raymond, Caitlin, and Daddy.. for fear they will bring something home... no friends or family over, no leaving the house, no stores, no family functions, no activities after school, and keeping him 6 feet away from people outside at all times.. What life is this for HIM?? for Me? and for Caitlin and Raymond?

So for those who say, "are you crazy", " how can you let him go back"... think about HIM!! His love of life, his energic personality, and the FIGHT he has put up to LIVE!!

Know that I have always tried to give Devin a NORMAL life with Quality. We have had many ups and downs through this journey and decisions have been difficult throughout. Their are no guarentees with keeping him home and trying to isolate him from the world.... so I MUST LET HIM LIVE!!!! This is a right he has truly earned!!! I must set aside my fears and pray that God will see him through...

Thank You again for your continued Prayers!!!

Home For A Week...

Submitted by Colleen and Derrick on Wed, 10/28/2009 - 1:39pm.

We are home a week today.. Thank you God!! Every day Devin seems a little stronger and his energy level seems to be picking up.. He had lab work done yesterday and all his numbers look good!! Tomorrow we will see our local GI doctor and nutritionist, whom we love. So far he is tolerating his feeds very well... no vomiting, no diarrhea, and no belly pain!! He does not have much of an appetite but this could take time plus he is getting 1500 calories per day from formula. He needs the calories to recover from being so sick. But tomorrow we will come up with a plan to cut some formula calories so hopefully he will eat. We will head back down to Georgetown December 9th for a Colonoscopy on the 10th. This will allow ample time between him being so sick and them looking and taking some biopsies of the bowel.

Devin is busy making up ALL his school work and homework. We have made GREAT progress with all of this.... THANKS to the help of
Mrs. Drennan. Who has given up her time over the last few days to help Devin get back on track. I truly appreciate all the help she has given to him and the break she has given me!!

Again... I can not THANK YOU ALL!!!!! enough for your continued support and prayers through Devin's medical journey.. NOTHING has gone unrecognized.. Your kind words in the guestbook, thoughts, prayers, cards, survival packages, his amazing birthday cake, gifts from near and far, and the list goes on!!!