Prograf Struggle....

Submitted by Colleen and Derrick on Sat, 07/11/2009 - 7:34pm.

Oh this poor little trooper.... blood draw, blood draw, blood draw.... for whatever the reason we can not get his prograf level (anti-rejection drug) to stabilize... its low then high, high then low... ahhhhhh!!! No one has been able to tell us why almost five months out we are still having trouble with this. Other then that we are on cruise control!! Just enjoying the lazy days of summer!! BASEBALL.... BASEBALL.... BASEBALL.... my front lawn looks beautiful! on any given day, at any given time their are at least 5 to 6 kids having a full blown game of baseball on it... Thank God for great neighbors. Devin has mastered swimming.. he is absolutely loving it!! His skills have improved tremendously!!!! thanks to having Raymond as a big brother!!! In the true fashion of being a big brother it is survival of the fittest in the pool!!!! and Devin is holding his own....

Crazy Weekend...

Submitted by Colleen and Derrick on Tue, 07/07/2009 - 3:05pm.

To sum it all up... its been a crazy weekend... vomiting resolved on it's own... sutures removed yesterday.. that was horrible!!!! Poor Devin's anxiety level is beyond measurable!! the kicking, screaming, pinching, and even biting was painful to watch.. some of them were under the skin. AHHHHH!!!!
The real curve ball came with his labs... Prograf level was perfect, who would have thought??? Everything else was EXTREMELY out of wack!!! so out of the ordinary I didn't even panic.. Now thats going some.. We repeated labs today and are waiting for the results. He is back to base-line today! Thank God!!! Pray for NORMAL labs!!

Busy Day...

Submitted by Colleen and Derrick on Sun, 07/05/2009 - 7:05pm.

Devin was vomiting and complaining of right lower side pain... he just wasn't himself, sleeping a lot, and still complaining of pain in his sutures.. I spoke with the transplant coordinator and headed to the ER... We were seen right away... and before long the transplant nurses came to rescue us... Thank you girls we love you!!! We were moved upstairs to monitored for a while because the most concerning thing to them was his blood pressure... it is VERY high... after 4 hrs... loads of labs!!! we are back in the hotel waiting for lab results and waiting to see the doctors tomorrow...

As of right now they are leaning towards a high prograf level (anti-rejection drug) this will cause all his symptoms.

Tomorrow the surgeons will take out his stitches...

Hopefully we will have a quiet night!!

So much for "NOTHING REALLY GOING ON"

So Much For Nothing...

Submitted by Colleen and Derrick on Sun, 07/05/2009 - 9:39am.

I officially used the words "nothing going on" for the last time. We are in DC waiting on labs and he seems to be having a problem with his stitches. The area around them is red and tender. He does not have a fever!! But his complaining is becoming more regular since yesterday. I am sure we are in for a trip to the ER today.

I Wrote Toooo Soon....

Submitted by Colleen and Derrick on Fri, 07/03/2009 - 9:30pm.

Devin's having some issues maintaining his prograf (anti-rejection drug) level... we thought over time this would become easier, but that is not the case.. We will be heading to Georgetown tomorrow for 7am labs on Sunday... then the doctor on Monday at 9... His level has been dropping very low which puts him at risk for rejection... we have been monitoring this closely at home... but being that we have a doctors appointment on Monday they want labs Sunday... So we will cut our weekend short and head down early.... :(

Everybody Is Asking???

Submitted by Colleen and Derrick on Thu, 07/02/2009 - 11:13am.

Ok I am sorry... I haven't updated... Honestly nothing is going on.. We have returned to "NORMAL" run.. run.. run... Today we are off to a baseball tournament in Baltimore then to the doctors in DC on Monday. Everyone is doing well!! Devin is LOVING!! the summer.. He is swimming completely on his own, no flotation device needed!! even in the deep end.. He is eating like a champ... not drinking enough... and playing for hours a day!! He is EXTREMELY excited because he can finally sleep and swim with no shirt on... it's the little things that make him happy...

The Time Has Come...

Submitted by Colleen and Derrick on Thu, 06/25/2009 - 3:42pm.

Oh I can't believe it.... the time has come for me to get rid of Devin's medical supplies. Devin has a pretty big closet that has been completely filled with medical supplies... THE TIME HAS COME FOR TOYS TO TAKE IT OVER!! except mom is having a hard time putting hundreds maybe even thousands of dollars worth of medical stuff in the garbage.....
I must admit I am having a hard time adjusting to "OUR NEW NORMAL" I know it sounds crazy but it is true!!! Managing Devins illness and medical needs became a way of life... I new what worked and what didn't.... when he was getting sick.... I new the warning signs.... Now its all new!!! and I know nothing!! This is completely unchartered territory... transplant is a science in and of itself.... I am learning slowly but surely!! A few ulcers later... and many gray hairs.... I should get the hang of it!!

Cranky...Day

Submitted by Colleen and Derrick on Tue, 06/23/2009 - 8:20pm.

Today Devin had to go for morning labs.. just as daddy was getting ready to stick him he decided that he wanted someone else to do it... LOL of course daddy was happy to grant that wish.. off to our friends in conscious sedation!! we love you ladies!! one stick and it was done!!! No more labs until next week!!

He was very cranky and winey today.. I think all of this has caught up with him. He came home from the hospital and acted as though he was on vacation for the week.. Hopefully after a good nights rest he'll feel better tomorrow.. He can sleep late!!

His appetite picked up were we left off... and thank god the intestines seem to be working GREAT!!!!!

Discharged And On The Road....

Submitted by Colleen and Derrick on Mon, 06/22/2009 - 8:30pm.

Devin and I have arrived home safely... We were discharged this afternoon but of course had to stop to pick up not one but two hot dogs for the road.. Devin had his two hot dogs and a feeding and we only had to stop once in 4 hours for a bathroom break. Now for some of you, your thinking who cares! This is big for a kid who couldn't eat and had CONSTANT DIARRHEA... Just the fact he was able to eat, not have diarrhea, and hold it when he finally had to go impressed me.
We will be heading back to DC around the 6th or so for suture removal.. Devin's not to happy about that.. he's decided he'll just keep them in.. LOL

Good Day...

Submitted by Colleen and Derrick on Sun, 06/21/2009 - 5:03pm.

Devin had a good day today... a little cranky and teary because he wants to go home... therefore he's feeling good..

To give you all a good laugh... we started clear liquids at 12:00 yesterday... of course once he was able to drink it was all over... that started the long list of food he wanted and needed!! hot dogs, waffles, donuts, chinese, steak, pork chops, and so on.. by 4:00 we had given into pasta and chicken!! it went down well and 3 hours later he pooped!!! On to bigger and better things... by 7:00 it was MEXICAN!! yes, MEXICAN... the word makes most peoples intestines hurt... Not Devin, he had his chicken and rice, ate like a pro and didn't poop until this morning!! Now if those aren't some good intestines!! He is tolerating his feeds... no vomiting, no belly pain, and pooping ok... he is complaining of incision pain but it is being well controlled by tylenol. He is up and about, we've been outside enjoying this cloudy cool day..

We are hoping for discharge tomorrow!! as long as we have a good night..
We are officially IV free!! So, Devin is down to only his little button feeding tube... OH BOY these were some HUGE steps!!!

PS he is waiting for his pancake breakfast!! LOL