Sunday, August 1, 2010
Just Hanging Out...
Submitted by Colleen and Derrick on Sat, 01/02/2010 - 7:55pm.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!!!
Submitted by Colleen and Derrick on Fri, 01/01/2010 - 12:11pm.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!!!!
The Word...
Submitted by Colleen and Derrick on Thu, 12/31/2009 - 11:32am.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
Where We Are At...
Submitted by Colleen and Derrick on Wed, 12/30/2009 - 4:53pm.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...
How Fast Things Change....
Submitted by Colleen and Derrick on Tue, 12/29/2009 - 5:44pm.Devin is rejecting on biopsy... we are off to DC and will be their for atleast a week or so...
Prayers Please!!!!
AHHH! What A LONG Day....
Submitted by Colleen and Derrick on Tue, 12/29/2009 - 1:45pm.Devin's intestines "look" beautiful as per Dr.K... as good as we could ever hope for! Of course the biopsy results will give us the final answer..
A few things to sort through!!
- Devin's labs show an increase in his kidney numbers... this in a "normal" child would be an indication of dehydration.. In Devin though their are a couple of questions.. dehydration seems highly unlikely being that he gets 3000cc or 100 oz of fluid every day.. So, with that being said their are two other concerns... one is, the anti-rejection medication (which is very hard on the kidneys) is it damaging Devin's kidneys.. (which is not uncommon but usually happens after being on them for years) Unfortunately their is nothing we can do about this because he needs those meds... and in some cases people do need kidney transplants usually years!! down the road... Of course a phrase that makes me nervous is "trying to perserve the kidneys as long as we can"... The second concern is.. did Devin have an underlying kidney condition before transplant that we missed because we were always so focused on his failing bowel and liver?? As per Dr. K that is really not important now.. we just need to deal with what is at hand..
The plan... after we get all the biopsy results back the team will discuss restarting a second anti-rejection medication and running them both at lower doses to try and help the kidneys along... I am a little concerned about this because he became soooooo sick on this drug in October... (not that we have many options) If this does not help his Kidney numbers then we will be visiting a nephrologist..
-Next on the list of concers... Devin lost 5 lbs!! so we are back on full formula feeds 1800 calories... 3000cc a day.. Dr. K said their is no explanation for why Devin STOPPED eating after his illness in October the entire GI tract look great top to bottom... So we need to sort through this too...
And to think I thought my new year was going to be boring and dull!!!
Continued prayers appreciated!!!
Reached DC...
Submitted by Colleen and Derrick on Sun, 12/27/2009 - 11:05pm.Our 4 hour journey to DC was 7 hours.... our usual hour and a half trip down the Jersey turnpike was 3 hrs... and all 11 miles in Delaware was 45 minutes... so needless to say Devin's bowel prep needed to be started in the car. This poor little guy..
Did anyone think to remind me that today was the end of the Christmas weekend! LOL!!!
Pray for a very uneventful day tomorrow!!
MERRY CHRISTMAS....
Submitted by Colleen and Derrick on Fri, 12/25/2009 - 11:03am.Merry Christmas to all of our faithful followers and pray warriors.. It has been some year.. and all of you have made such a huge difference! Thank You!!
AHHHH! I can now breath… we made it through Christmas healthy! Thank you God! Our day started at 6:45am.. but I managed to get Devin to lay with me until his 7:30 meds were do.. Then all bets were off as he jumped out of bed and ran through the house SCREAMING!! Caitlin and Raymond… Santa really was here there is even Raindeer prints in the snow on our front lawn!!! They were both so eager to get up at 7:45… 2AM or 2PM would have worked better for them.. the joy of teens!
During this season of “Miracles” and “Believing” there are many people we need to think about and be Thankful for… Today the most important person we need to think about is… our little donor angel… he gave Devin the greatest gift of all LIFE!! As we celebrate Devin’s first Christmas with his new belly (as he put it this morning) Our donor family must celebrate their first Christmas without their little loved one.. If I could ask you all to just say a little pray for all those who have so graciously given children the gift of life during their time of sorrow…
Believe because Miracles do Happen!!!!
Always Changing...
Submitted by Colleen and Derrick on Tue, 12/08/2009 - 4:38pm.They called from school today, while I was at the foot doctor with Caitlin... she broke her foot!! on Sunday night.. He was complaining of a headache and had a low grade temp... his congestion has gotten worse. I spoke with the doctors and the plan is... if his temp comes back and is greater then 101 we are off to the ER...grrrrr! He will need labs and a CT of his sinuses and x-ray of his chest.
Colonoscopy and endoscope postponed until Dec 28th.
I just got back from getting a second opinion on Caitlin's foot. Unfortunately the break is not alligned.. We will re-x-ray in 10 days.. If all is going well and healing nicely... we will leave well enough alone... if not she will need surgery!! As of right now she will be in a cast for 12 weeks!! and absolutely no pressure on the foot....
Tis' the season but I am just NOT feeling it!!
Just Hanging Out...
Submitted by Colleen and Derrick on Sat, 01/02/2010 - 7:55pm.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!!!
Submitted by Colleen and Derrick on Fri, 01/01/2010 - 12:11pm.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!!!!
The Word...
Submitted by Colleen and Derrick on Thu, 12/31/2009 - 11:32am.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
Where We Are At...
Submitted by Colleen and Derrick on Wed, 12/30/2009 - 4:53pm.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...
How Fast Things Change....
Submitted by Colleen and Derrick on Tue, 12/29/2009 - 5:44pm.Devin is rejecting on biopsy... we are off to DC and will be their for atleast a week or so...
Prayers Please!!!!
AHHH! What A LONG Day....
Submitted by Colleen and Derrick on Tue, 12/29/2009 - 1:45pm.Devin's intestines "look" beautiful as per Dr.K... as good as we could ever hope for! Of course the biopsy results will give us the final answer..
A few things to sort through!!
- Devin's labs show an increase in his kidney numbers... this in a "normal" child would be an indication of dehydration.. In Devin though their are a couple of questions.. dehydration seems highly unlikely being that he gets 3000cc or 100 oz of fluid every day.. So, with that being said their are two other concerns... one is, the anti-rejection medication (which is very hard on the kidneys) is it damaging Devin's kidneys.. (which is not uncommon but usually happens after being on them for years) Unfortunately their is nothing we can do about this because he needs those meds... and in some cases people do need kidney transplants usually years!! down the road... Of course a phrase that makes me nervous is "trying to perserve the kidneys as long as we can"... The second concern is.. did Devin have an underlying kidney condition before transplant that we missed because we were always so focused on his failing bowel and liver?? As per Dr. K that is really not important now.. we just need to deal with what is at hand..
The plan... after we get all the biopsy results back the team will discuss restarting a second anti-rejection medication and running them both at lower doses to try and help the kidneys along... I am a little concerned about this because he became soooooo sick on this drug in October... (not that we have many options) If this does not help his Kidney numbers then we will be visiting a nephrologist..
-Next on the list of concers... Devin lost 5 lbs!! so we are back on full formula feeds 1800 calories... 3000cc a day.. Dr. K said their is no explanation for why Devin STOPPED eating after his illness in October the entire GI tract look great top to bottom... So we need to sort through this too...
And to think I thought my new year was going to be boring and dull!!!
Continued prayers appreciated!!!
Reached DC...
Submitted by Colleen and Derrick on Sun, 12/27/2009 - 11:05pm.Our 4 hour journey to DC was 7 hours.... our usual hour and a half trip down the Jersey turnpike was 3 hrs... and all 11 miles in Delaware was 45 minutes... so needless to say Devin's bowel prep needed to be started in the car. This poor little guy..
Did anyone think to remind me that today was the end of the Christmas weekend! LOL!!!
Pray for a very uneventful day tomorrow!!
Just Hanging Out...
Submitted by Colleen and Derrick on Sat, 01/02/2010 - 7:55pm.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!!!
Submitted by Colleen and Derrick on Fri, 01/01/2010 - 12:11pm.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!!!!
The Word...
Submitted by Colleen and Derrick on Thu, 12/31/2009 - 11:32am.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
Where We Are At...
Submitted by Colleen and Derrick on Wed, 12/30/2009 - 4:53pm.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...
How Fast Things Change....
Submitted by Colleen and Derrick on Tue, 12/29/2009 - 5:44pm.Devin is rejecting on biopsy... we are off to DC and will be their for atleast a week or so...
Prayers Please!!!!
Just Hanging Out...
Submitted by Colleen and Derrick on Sat, 01/02/2010 - 7:55pm.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!!!
Submitted by Colleen and Derrick on Fri, 01/01/2010 - 12:11pm.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!!!!
The Word...
Submitted by Colleen and Derrick on Thu, 12/31/2009 - 11:32am.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
Just Hanging Out...
Submitted by Colleen and Derrick on Sat, 01/02/2010 - 7:55pm.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!!!
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!!!
Submitted by Colleen and Derrick on Fri, 01/01/2010 - 12:11pm.
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
Where We Are At...
Submitted by Colleen and Derrick on Wed, 12/30/2009 - 4:53pm.
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...
Prayers Please!!!!
AHHH! What A LONG Day....
Submitted by Colleen and Derrick on Tue, 12/29/2009 - 1:45pm.
Devin's intestines "look" beautiful as per Dr.K... as good as we could ever hope for! Of course the biopsy results will give us the final answer..
A few things to sort through!!
- Devin's labs show an increase in his kidney numbers... this in a "normal" child would be an indication of dehydration.. In Devin though their are a couple of questions.. dehydration seems highly unlikely being that he gets 3000cc or 100 oz of fluid every day.. So, with that being said their are two other concerns... one is, the anti-rejection medication (which is very hard on the kidneys) is it damaging Devin's kidneys.. (which is not uncommon but usually happens after being on them for years) Unfortunately their is nothing we can do about this because he needs those meds... and in some cases people do need kidney transplants usually years!! down the road... Of course a phrase that makes me nervous is "trying to perserve the kidneys as long as we can"... The second concern is.. did Devin have an underlying kidney condition before transplant that we missed because we were always so focused on his failing bowel and liver?? As per Dr. K that is really not important now.. we just need to deal with what is at hand..
The plan... after we get all the biopsy results back the team will discuss restarting a second anti-rejection medication and running them both at lower doses to try and help the kidneys along... I am a little concerned about this because he became soooooo sick on this drug in October... (not that we have many options) If this does not help his Kidney numbers then we will be visiting a nephrologist..
-Next on the list of concers... Devin lost 5 lbs!! so we are back on full formula feeds 1800 calories... 3000cc a day.. Dr. K said their is no explanation for why Devin STOPPED eating after his illness in October the entire GI tract look great top to bottom... So we need to sort through this too...
And to think I thought my new year was going to be boring and dull!!!
Continued prayers appreciated!!!
Our 4 hour journey to DC was 7 hours.... our usual hour and a half trip down the Jersey turnpike was 3 hrs... and all 11 miles in Delaware was 45 minutes... so needless to say Devin's bowel prep needed to be started in the car. This poor little guy..
Did anyone think to remind me that today was the end of the Christmas weekend! LOL!!!
Pray for a very uneventful day tomorrow!!
MERRY CHRISTMAS....
Submitted by Colleen and Derrick on Fri, 12/25/2009 - 11:03am.
Merry Christmas to all of our faithful followers and pray warriors.. It has been some year.. and all of you have made such a huge difference! Thank You!!
AHHHH! I can now breath… we made it through Christmas healthy! Thank you God! Our day started at 6:45am.. but I managed to get Devin to lay with me until his 7:30 meds were do.. Then all bets were off as he jumped out of bed and ran through the house SCREAMING!! Caitlin and Raymond… Santa really was here there is even Raindeer prints in the snow on our front lawn!!! They were both so eager to get up at 7:45… 2AM or 2PM would have worked better for them.. the joy of teens!
During this season of “Miracles” and “Believing” there are many people we need to think about and be Thankful for… Today the most important person we need to think about is… our little donor angel… he gave Devin the greatest gift of all LIFE!! As we celebrate Devin’s first Christmas with his new belly (as he put it this morning) Our donor family must celebrate their first Christmas without their little loved one.. If I could ask you all to just say a little pray for all those who have so graciously given children the gift of life during their time of sorrow…
Believe because Miracles do Happen!!!!
They called from school today, while I was at the foot doctor with Caitlin... she broke her foot!! on Sunday night.. He was complaining of a headache and had a low grade temp... his congestion has gotten worse. I spoke with the doctors and the plan is... if his temp comes back and is greater then 101 we are off to the ER...grrrrr! He will need labs and a CT of his sinuses and x-ray of his chest.
Colonoscopy and endoscope postponed until Dec 28th.
I just got back from getting a second opinion on Caitlin's foot. Unfortunately the break is not alligned.. We will re-x-ray in 10 days.. If all is going well and healing nicely... we will leave well enough alone... if not she will need surgery!! As of right now she will be in a cast for 12 weeks!! and absolutely no pressure on the foot....
Tis' the season but I am just NOT feeling it!!
Quick Follow Up..
Submitted by Colleen and Derrick on Mon, 12/07/2009 - 8:27pm.
Devin saw the infectious disease doctor today... she feels his cough and sinus congestion is related to having the flu in October and November... do to his immune suppression and the fact that this has been going on so long we are going to start antibiotics.. again just because things haven't gotten any better.. As for his colonoscopy and endoscope... we will leave that in Georgetown's lap!! His cough sounds bad... but his lungs are clear!!
We'll See!!!
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