Disney.....

Submitted by Colleen and Derrick on Tue, 04/13/2010 - 8:16am.

Happy Easter....

Submitted by Colleen and Derrick on Sun, 04/04/2010 - 8:41am.

Happy Easter to all our faithful followers and prayers warriors.. Devin has had a GREAT weekend... last night he got to go to the Nets game with Raymond and his friends!! Very exciting!! I was a little nervous!! but they had a good time!! This morning he had a great time finding all the eggs that the Easter bunny left... LOL He loved his basket filled with goodies... and the BIG SURPRISE... Where do you go when you've had 6 months of nothing but illness and hospitalization..... DISNEY!!!!! A last minute trip but a much deserved trip for all! Unfortunately Raymond will stay home to play baseball :( (He's not to upset over it... teenagers!!)

Please!! pray that we have a trip filled with good health and fun!!!!

Happy Easter!!

Not Sure What To...

Submitted by Colleen and Derrick on Sat, 03/27/2010 - 10:11am.

Think anymore... Yesterday Devin was suppose to see the Endocrinologist, Nephrologist, and Gastroenterologist... all within 40 minutes of each other at two different hospitals. I decided that this was impossible for me to do and honestly just not fair for him. It was his snack and show and tell day at school once again and he had already missed it do to hospitalizations and doctors appointments in the past. He always asks "when will I finally get a turn" I did not once again have the heart to tell him his turn would come and go. So I decided Endocrinology was the MOST pressing issue at this point and needed to be handled first.... Then if we were lucky enough to get in and out and rush we could make it to school. Luck, was on our side! and we did it.

At 3:30 I received a call from the Nephrologist... "you missed your appointment today and we really needed to see you" ggggrrrrr!!! "I am so sorry honestly I missed to go to the Endocrinologist because that was the most pressing issue right now"....."well honestly we need to see him too, Devin has MULTIPLE KIDNEY STONES IN BOTH KIDNEYS.... this will only complicate an already complicated situation"... I understand I will get him in as soon as I can get an appointment" AAAAAAAAHHHHHHHHHH!!!!!!!!!!

Of course after I hung up the phone I thought of all my questions....
***could this be why his kidney numbers are off??
***could this be why his blood pressure is so high???
***could this be why it takes 3000cc (100 oz) to hydrate him & may I add not well??
***if we try and get rid of them could all these issues improve???
COULD THESE STONES BE THE ROOT OF ALL THE KIDNEY ISSUES???

God help those who called between 3:30 and 5:30 yesterday because they pretty much got.... " I am doing the best I can!!! I can not fit everything in!! I am one person!!! and so on!!!"

Well after I calmed down I have come to realize and some what accept that Devin's life has become MUCH more complicated after transplant. I need to be thankful and cherish the good days... and not think about what the future will bring... I can only ask myself this one question... how long can we go on trying to fix each organ system individually... and as a PICU nurse I know the answer...

I am looking forward to spring and summer... I just wanna have fun with my 3 kids!! build memories that will last forever... and cherish every moment!!! BECAUSE, that's all I have control over!!!

Adjusting...

Submitted by Colleen and Derrick on Tue, 03/23/2010 - 4:15pm.

I can only say that at this point the only thing that is keeping me going is.... a year ago I sat in DC overwhelmed... tired... and not quite sure how I was going to make it through the days ahead... Feeling as though I knew nothing! and scared to death of the what ifs... Well here we are 1 year later... I am sitting at home overwhelmed... tired... and not quite sure how I am going to manage his diabetes on top of everything else... It is a pyramid and the slightest shift to the left or to the right sends the entire thing crumbling... We met with the endocrinologist and the nurse practitioner today... (whom I am blessed to know very well) So much to learn, so much to understanding, and so much to balance!!! I can only hold on to the fact I managed and made it through the first year of transplant... with some SERIOUS ups and downs... I hope and pray I can learn quickly and balance this one new complication....

Thanks for your continued support and prayers!!! At this point I think I need them more then Devin!! I guess thats a good thing!!

One More Adjustment....

Submitted by Colleen and Derrick on Fri, 03/19/2010 - 11:25am.

Off to school he went today... I took a deep breath and sent him through the door with one new diagnosis... He was greeted by a friend with a great big hug and off to class they went... A BIG!!! thanks to Julie who makes my life much easier and makes these transitions much more manageable...
I returned at 10 to test his blood sugar and give him insulin... Hopefully Tuesday we will work through the issues and have all the paper work complete so the school nurse can take over doing this..

Please.. special prayers for our friend Thomas.. Thomas unfortunately got cancer after transplant. He was doing well but in the last few weeks has had some complications and it seems as though the tumor is coming back.. Tina, know that you are in my thoughts and prayers... Then their is our friend Gabbi... Gabbi is also having some bowel complications after transplant... We are praying today that they can find the problem and fix it... Nina, I'm thinking about you!! HUGS... to all from NY!!

Thank you all for your continued support and prayers!!

I Guess....

Submitted by Colleen and Derrick on Tue, 03/16/2010 - 6:15pm.

Someone forgot to mention to Devin that he just got over pneumonia and sinusitis... spent 7 days in a hospital bed... and is having blood sugar issues... Not to mention that his mother needs time to get use to doing blood sugars and insulin along with all his other meds and feeds....

He was full steam ahead today! We played baseball... road bikes... and played outside... He had FUN!!! I need a nap... maid... and grocery shopper!!

Kids are AMAZING!!!

We Are....

Submitted by Colleen and Derrick on Tue, 03/16/2010 - 12:31pm.

HOME!!!!! with a lot to do over the next 2 weeks... We have come home on Insulin and will follow the entire diabetic regimen... so more learning for me! I will call his numbers in every 48 hours or so, unless of course we are having problems. We will follow up with pulmonary for some pulmonary function tests within the next two weeks... Renal, the ultrasound came back with some questionable finding so we need to follow-up and probably go for furthers testing.. Of course we will see GI sometime within the next week... and stay on antibiotics for the next two weeks to make sure the pneumonia and sinusitis is gone...

Somewhere we will fit something FUN in... if it kills me!!

One Day At A Time...

Submitted by Colleen and Derrick on Sun, 03/14/2010 - 8:48pm.

Endocrine came this afternoon... they put him on Insulin and will monitor his blood sugars. We are still waiting on some lab work to come back before they can give us an official diagnosis..

Exhausted... Aggravated... Looking forward to a good night sleep at home and a fresh start tomorrow...

Thanks for all your kind words.. thoughts.. and prayers...

Quick Update...

Submitted by Colleen and Derrick on Sun, 03/14/2010 - 7:56am.

They did finally start Insulin last night and they also started giving him extra fluid...

I am relieved this morning to know that the covering GI doctor is as alarmed and upset as I am over the consult not being done!! I was starting to feel crazy...

Hope they show up today... Blood sugars are still very high... But pneumonia and sinusitis has resolved!

Scratching My Head.... (Saturday Night)

Submitted by Colleen and Derrick on Sun, 03/14/2010 - 7:52am.

Many of you have e-mailed me asking why all these doctors all of the sudden...

*Infectious Disease... is always involved in his care because they are the ones who can best manage antibiotic coverage in immune suppressed patients.

*Pulmunology... to try and figure out if we are missing something with Devin's lungs. Every time Devin gets cold like symptoms he ends up with full blown pneumonia.... why?? Yes he is immune suppressed but NOT all immune suppressed kids get this sick EVERY month.. Could he have some underlying allergies/asthma??

*Nephrology (Kidney Doctor)... Devin has had a high BUN and Creatine for a while now.. We always blamed the high BUN on needing more fluid, he now gets 3000cc a day 100 ounces!!! He is requiring a lot of blood pressure medication and we don't have great control... WHY????
Today he had a renal ultrasound and will go for an echo of his heart to make sure the blood pressure issues are not causing an enlarged heart..

*Endocrinology... suddenly Friday Devin's blood sugars started running 340-460 with sugar in his urine.. He is urinating frequently and is thirsty.. He had a lot of labs drawn this morning, which will give us some answers but will take a few days... The big question to all my medical and diabetic friends WHAT IS HIS Hem A1C 7... not bad but the symptoms are all their..

Why am I scratching my head... We have yet to see the Endocrinologist when the referral was made Friday.. we just got word he will not be here today... he wants to monitor his weight and blood sugar for the next day or two... aka I'll see you Monday... Well they sort through the details of this maybe we should treat the high blood sugar??? He is urinating a lot and the last thing we need for the bowel is dehydration... Devin "in's and out's" need to be monitored very closely..

I know I am not one of the favorites here tonight... It is Saturday night and I WANT ANSWERS!!!! I don't care that the weather is bad! and that it is the weekend! his high blood sugar needs to be treated!! I am so frustrated!!!! His situation is so complex... why can't they get it!! They look at me like I am crazy!!! Here I am in one major hospital and they are telling me maybe I should call DC and see what they want... This is 2010.. we have high blood sugar... we need good hydration... where is the problem??? MONDAY CAN NOT COME QUICK ENOUGH!!!!!!!!!!!!!

Oh... What A Day...

Submitted by Colleen and Derrick on Fri, 03/12/2010 - 4:57pm.

Devin had a good day yesterday... No fever, headaches improving, and cough much looser... He fell asleep around ten and by midnight was awake asking for water... then at 1... then at 2... then at 3:30... I started thinking, something is wrong! My first thought was that his formula was mixed incorrectly and their was to much sodium bicarb in it.. in the past this would case Devin to be thirsty.. Well no such luck!! His morning labs came back with a glucose of 480.. His urine had sugar in it... and his Prograf level which was 5.7 yesterday came back 16.2... WHAT IS GOING ON!!!!!!!! The opinion is Devin now probably has diabetes and something metabolic going on... GRRRR I know a very treatable diagnosis, but one more thing on Devin's plate!!

Today, Devin was seen by a renal doctor for his high Kidney numbers (BUN & Creat) and his high blood pressure. He will have an echo of his Heart and ultrasound of his Kidney's this weekend.. He will be seen by an Endochrinologist tomorrow and have a full work up tomorrow morning.. In the meantime we are monitoring his blood sugar.. As for the pneumonia and sinusitis. He will get 7 days of IV antibiotics then 2 weeks of oral.. The pulmonologist wants to start him on some inhaled steriods to hopefully help him get through the next few months of allergy/respiratory illness season..

Honestly I don't have much to say... One Day At A Time... One Step At A Time....

Thanks for all your thoughts and prayers!!

Already One Of Those Mornings...

Submitted by Colleen and Derrick on Thu, 03/11/2010 - 9:11am.

We will start with the GOOD news.. Devin was transfered out of Intensive Care and is now on the Peds floor... :) One step closer to the door!! On the down side... He has pneumonia and pan-sinusitis (all his sinus are infected) This will keep him on antibiotics for a couple of weeks! This is not good.. long term antibiotic use cases diarrhea... so now we will have to try and balance that with a transplanted intestines... Also we had to stop one of his anti-rejection meds to try and help him recover from this illness.. I would think!! I don't know for sure that this drug can not be restarted while his sinuses are so infected... which puts us at an increased risk for rejection... aaaaahhhhhh!!!! Never Ends.... & Is Never Dull....

As for the cranky part of me... Lab shows up an hour and a half late to draw a 12 drug level of his anti-rejection drug... I AM NOT HAPPY!!!! this is so important especially at a time like this.... this also made his med over an hour late.... GRRRRRR

An for my sanity... IF I HAVE TO WATCH THE YANKEES WIN THE WORLD SERIES ONE MORE TIME... THE WINDOW IS LOOKING GOOD!!!
I hear in my sleep "THE YANKEES WIN.... THE YANKEES WIN..

Can Summer Please Come...

Submitted by Colleen and Derrick on Wed, 03/10/2010 - 7:39am.

Devin has had a sinus/cough thing going on for the last week... On Thursday we saw the infectious disease doctor.. Devin's symptoms got no worse... or no better... over the weekend... and he had NO fever.. He actually had a good weekend running around playing outside... even went to the park to play baseball Monday..

Tuesday morning I woke him up for school and he told me he had a fever.. 102... grrrrr! By 8:30 it was 103.8!!! Off to the ER we went... On the way to the ER he was complaining of back, chest, and shoulder pain on the left side.. X-ray confirmed pneumonia.. :(

We were admitted to the pediatric floor (briefly)... he started to require oxygen support because his oxygen saturation was drifting down... and his blood pressure was low.. and his chest x-ray looked worse then the morning one.. We were transfered to the ICU while we waited for Georgetown to come pick him up.... AAHHHH! THANK GOD!!! after a bolus of fluid and some oxygen support Devin seemed to turn around and his transfer to DC was canceled!! Robert Wood agreed to watch him through the night and Georgetown agreed to wait it out....

Here we are this morning... he had a good night (considering what it could have been)... still complaining of a lot of pain.... had fever during night... and coughing!!

Hoping for a boring!!! day...

Thanks for all the prayers and support!!!

Tired....

Submitted by Colleen and Derrick on Tue, 03/09/2010 - 11:04pm.

Will post the details of the day tomorrow... for now Devin is in the intensive care unit at Robert Wood... he seems to have turned the corner... but they will continue to monitor him closely.

Good Weekend...

Submitted by Colleen and Derrick on Mon, 03/08/2010 - 8:56am.

Thank God we had a good weekend... Devin still has a very bad cough and some sinus issues. I am starting to believe it is allergies.

It was a beautiful weekend so Devin actually got to be outside running around like a nut!! Yesterday... Spring training was in full swing on my driveway... balls and bats where flying!!! and of course fighting with the umpire over the calls... aka Derrick! LOL!!!

I hope Devin's upper respiratory and sinus symptoms start to improve!! It's almost been a week!!

Just Waiting...

Submitted by Colleen and Derrick on Thu, 03/04/2010 - 6:06pm.

My pediatrician is out of the country... and my local Gi doctor is in Paris... Thanks!!! to the help of my nutritionist pulling a few strings Infectious Disease Dr was able to see Dev today... Helping us avoid a trip to the ER.. Labs, x-ray, and viral studies all sent off... We are in the wait and see period. Devin definitely has a cold.. now we just need to wait and see if he can fight it off or if he'll get sicker. The next 48 to 72 hours will tell the story...

Prayers Please :)

GGGRRRRR...

Submitted by Colleen and Derrick on Wed, 03/03/2010 - 10:43pm.

Somethings up.... Devin came home from school today.. put himself to bed and slept... his voice is hoarse... he is congested... he has a headache... and just doesn't feel good! I hope and pray we make it through the night WITHOUT a fever.. OR we'll be off to the ER :(

Colonoscopy Results....

Submitted by Colleen and Derrick on Wed, 02/24/2010 - 3:24pm.

Biopsy results are "remarkable"... from top to bottom!!! If he can stay healthy and everything remains good.. next scope!!! 4-6 months!!!

Thank You Lord!!!