Back to DC tomorrow for a colonoscopy Monday morning.. My poor little dude.. Please pray things go very smoothly and pray the biopsy results are back to baseline.
I know many of you have been patiently waiting... as were we... So, the biopsies are NO worse... nor better! Leading the team to believe that this was not rejection... but possibly a virus or bacterial infection.. The one piece that does not make sense then is why did he not get sick when they suppressed his immune system again??? I believe they are all scratching their heads.. what I was told, "Not especially concerning... has to be watched very closely... never really been seen before" The plan... cut his steriod dose in half, just incase it is a virus or bacteria... watch hime very closely for signs of illness.. fever, vomiting, diarrhea, belly pain... and Colonoscopy Monday morning!!
Not really sure what to think or how to feel...
Thanks again for all your support...
NIGHTMARE!!!!! from beginning to end…. Devin’s procedure started at 1 …. and finished at 4:45!!!! Long story… too long to go into!! Devin did well during the procedure… Dr K was called in around 3:45 to relieve the situation… Biopsy’s done… Bowel still looks BEAUTIFUL! But as we all learned last week the final results will come after pathology looks at the biopsies.
Thanks to our great nurses… Devin has already had his ham sandwich (wanted a second, but kitchen closed), 3 pancakes, and his milk!! He is laying peacefully with his heating pad on watching TV…
Long hard day!!!! Bed is calling!
I have come to the conclusion that one day Devin will probably need post traumatic stress therapy... Surgery, Surgery, Surgery, Transplant, Drains, Flu, Multiple IV's, Multiple Colonoscopy's, Multiple Endoscopy's, Multiple Bowel Preps, and the list can go on.....
Today, as he laid in bed promising he would be good if they didn't stick him again for an IV. I realized this poor kid is so confused as to why this is all happening.. Their have been a couple of times lately that he blames himself or the situation in relation to medical stuff... ie when they can't get an IV in he cries "but I stayed still, I was good" and when we were heading down here the other day he was so upset saying " I followed all the directions yesterday I stayed still, so why do I have to go back?" He has been through more in 6 years then some adults have been through in their entire life.... WHY???? It is so wierd how life works.... will he ever catch a break!!! I am so concerned about all this immune suppression, school and every day life... How do you protect a 6 year old who loves life from germs... aaahhhh Another day another worry!!
Please extra prayers tomorrow... his colonoscopy is scheduled for 1:30... we will NOT have results until TUESDAY EVENING... I will post the minute I hear anything...
Thanks for all your prayers and support!!!
We are just hanging out watching TV, playing video games, painting, using glitter!!!!!!, playing games, watching movies, and doing school work (not a favorite) We are anxiously awaiting his colonoscopy which is scheduled for 1:00 on Monday. We will not have the results until Tuesday evening :( ! But if all goes well we will be discharged Wednesday morning.. If their is no change or things have gotten worse then they will meet as a team to talk about how to move forward.. So please extra prayers on Monday..
We had some visitors which was MUCH appreciated!!! Derrick was able to get 2 days off ( thanks Joe & Meena) Derrick, Caitlin, & Brianne arrived yesterday morning and just left :( Devin was so happy to see them and I was so happy to get one night in a bed.
Unfortunatley this evening Devin's IV come out... aahhhh!!!! what a nightmare!! We are waiting to see if it has to be put back in tonight or can he take his meds by mouth and put it in Monday. The poor thing has been stuck all week!!!
Happy New Year to our family, friends, faithful followers, and prayer warriors... As we leave 2009 behind... We reflect on a year that has been life changing for all of us... We were blessed when it began with a dance to support Devin's Ray of Hope.. People came from near and far to support us on our transplant journey... Just two short weeks after that we were blessed with the ultimate gift... "life".... With that blessing came an amazing group of doctors, nurse, and hospital staff that has given Devin wonderful care both here in DC and NJ.... and have supported Derrick and I though some difficult times this year.. Then their are all of you!! your kind words, prayers, and emotional support have been greatly appreciated... SO as we enter 2010... there is only one thing we hope and pray for... it can not be bought with any amount of money, it can not be given as a gift, you can only be blessed with it... "HEALTH" .... Happy New Year!!!!
As per the team… Devin has minimal rejection that barely crosses the threshold… This is good news! I know many of you are probably thinking, how could this be good. Rejection comes in varying degrees. The earlier it is detected and the more minimal it is the better the outcome (usually). So considering the Fall Devin has had, considering that in October they told us he was not going to make it, and if he did he probably would need to be re-transplanted… I guess minimal rejection is manageable… of course I was being greedy and wanted to walk away with everything being perfect!
Devin is in steroid mania!! By the end of today our hospital room will be painted a different color and have some glitter to add character! And he is like an eating machine.. since last night we have gone through a box of pancakes. LOL!! My precious angel in sleeping right now, so needless to say I am breathing very quietly.
Thank you all again for all of your support and kind words!!
Hope everyone has a Safe, Happy, & HEALTHY!! New Year
We are still waiting to see Dr. K today, it is very busy here... The resident was in and went over the plan... so as per Dr. K orders they started Devin on high dose IV steriods this will suppress his immune system... he has been started on another anti-rejection drug, rapamune... and they have increased his dose of prograf. They also have run some tests to make sure they are not missing any viruses or such that can effect the bowel. They have started an anti-viral medication, just incase.. For now we wait... wait.... n wait some more. Hopefully later tonight I will have more info regarding exactly what they are thinking.
For the time being I sit here and think.... how do you ever let your guard down... how do you ever sleep soundly... Devin is ABSOLUTELY FINE!!!! not one symptom of rejection. No pain, no vomiting, no diarrhea, no fever, he is tolerating his feeds great! he stools every other day to every two days, formed stool... So, how do I get past the "what if he wasn't scheduled for a scope on Monday" "what if this was going on with no signs symptoms... where would we have ended up a couple of weeks from now???"
Please keep the prayers coming... again I appreciate all of the support!!
I will post again after I speak to Dr.K....
Devin is rejecting on biopsy... we are off to DC and will be their for atleast a week or so...