Sunday, August 1, 2010
Balance...
Submitted by Colleen and Derrick on Fri, 04/30/2010 - 5:38pm.We weathered our first GI Bug... one night of vomiting... but days of diarrhea.. Thank God his labs look good and he is maintaining his anti-rejection drug levels... so we will continue to monitor this.. Being that he has had an intestinal transplant it will take him longer then average to get over this type of illness.. as long as he tolerates more in then out and no fever, we are ok!!
He was started on the insulin pump Tuesday so we are adjusting.. This was originally the plan but of course it takes time for the insurance company to approve it.. Thanks to some good friends and coworkers we have a loaner for the time being..
All our doctor visits...
Nephrologist... we went to discuss kidney stones but their were more pressing issues to her..
** Why is he on 3000cc (100 oz) of fluid per day?? I think to protect his kidneys from the anti-rejection drugs... She, claims it will not help and it is far to much fluid for a kid his size...
**Why does he have sugar in his urine?? Because he is a new diabetic that we are trying to regulated... She says, he needs an insulin pump ASAP to gain better control... Tell that to the insurance company!!
**Now the million dollar question... Is he peeing a lot because his sugar is to high or because he is getting 3000cc?? She claims the blood sugar needs to be stable.. and then we need to re-address question 1... because it is a vicious cycle!!
**Why is he on so much blood pressure medication?? Because we have always had blood pressure issues... She, stopped one (thank god because I hated it), weaned another, and went up on one... We will monitor his blood pressure twice a day.
**Kidney stones... we need to do a 24 hour urine.. but the results won't be correct with the sugar and all the peeing... She would also like to monitor what he takes in vs what he put out by measuring it daily!!
Gastroenterologist visit...
He needs to cut back on his calories... can't believe that!! When we started with doctor Devin was in the 13% for BMI (body mass index) now we are in the 91%... impressive!! only problem... being to heavy will increase his blood pressure, make it harder to manage his diabetes, and put more of a strain on his kidneys... So the simple solution was to cut the calories in his formula... Weigh in, in 3 weeks LOL He is 58 lbs!!
Endocrinologist...
Of course I ran home from the nephrologist and tortured the endocrinologist and his nurse practitioner with e-mails... we have to fix this!!! LOL and so they did... we are now on the insulin pump and adjusting slowly but surely!!
Pulmonologist..
We missed because of his stomach virus...
Neurologist..
As I have posted in the past Devin has had a complete change in personality and behavior... He had a neuro assessment and the neurologist feels it could be an interaction between all the meds he is on... The sudden change could be that overall Devin's body is doing better he has intestines that are absorbing, he liver function is better, and his metabolism has probably improved.. Before transplant and after transplant it required higher doses of medication to get the job done... Maybe this is no longer the case and he is over medicated... The plan, between now and July we hope to wean him off some of these medication and see how he does.. The real goal is to not add any new medications... He also recommended a behavioral therapist who may be able to help Devin sort out his feelings and help us deal with a chronically sick child...
and that wraps up one week in the life of Devin... Hoping to enjoy the weekend and soak up the sunshine!!
ONE DAY AT A TIME.... ONE STEP AT A TIME... & PRAYERS!!!
Special Prayers
Submitted by Colleen and Derrick on Tue, 04/27/2010 - 10:40am.Special prayers today for Thomas... Thomas is being kept very comfortable, but he is fading... I am so sad and my heart breaks for Tina, Chuck, & Zach.. Why should any family have to go through this.. Why should any child have to suffer??
May God watch over Thomas and bless his little soul! We will hold Thomas in our hearts forever...
First Time For Everything...
Submitted by Colleen and Derrick on Sat, 04/24/2010 - 7:57pm.Well we are weathering our first stomach virus ever! and to add to that challenge... diabetes!! It could be a long night!!
Had our doctors appointments yesterday and honestly nothing great to report.. a lot of little adjustments... came off one blood pressure med, increased another, further urine tests, and having his blood sugar monitored via a sensor because even though his numbers look good he has sugar in his urine.... the nephrologist wants tighter control of his diabetes... before we deal with the kidneys...
As you all have witnessed before it is a balancing act with Devin.... try though I may, one I have not been able to master!! so I will continue to try!! Step 1 is getting him on an Insulin pump...
Pray that tonight we can avoid the emergency room!! and we can have a speedy recovery from this stomach virus!!!
PLEASE! continue to pray for Tina and Thomas... Thomas is being kept comfortable.... and Tina's strength amazes me!!! She is trying very hard to prepare Zachary (her 7 year old). Tina & Chuck my prayers are with you!!!
Favor Please...
Submitted by Colleen and Derrick on Fri, 04/23/2010 - 7:30am.Today my dear friend Tina needs our prayers... Thomas, Devin's little transplant friend... whom we have spent plenty of time with down in DC is dying.. My heart is so heavy!! I wish I could be their with Tina to help her..
Today I pray for Tina's strength and Thomas's comfort!
Thanks!!!
you can visit Thomas's site
www.caringbridge.org/visit/babythomas2
Balance...
Submitted by Colleen and Derrick on Fri, 04/30/2010 - 5:38pm.We weathered our first GI Bug... one night of vomiting... but days of diarrhea.. Thank God his labs look good and he is maintaining his anti-rejection drug levels... so we will continue to monitor this.. Being that he has had an intestinal transplant it will take him longer then average to get over this type of illness.. as long as he tolerates more in then out and no fever, we are ok!!
He was started on the insulin pump Tuesday so we are adjusting.. This was originally the plan but of course it takes time for the insurance company to approve it.. Thanks to some good friends and coworkers we have a loaner for the time being..
All our doctor visits...
Nephrologist... we went to discuss kidney stones but their were more pressing issues to her..
** Why is he on 3000cc (100 oz) of fluid per day?? I think to protect his kidneys from the anti-rejection drugs... She, claims it will not help and it is far to much fluid for a kid his size...
**Why does he have sugar in his urine?? Because he is a new diabetic that we are trying to regulated... She says, he needs an insulin pump ASAP to gain better control... Tell that to the insurance company!!
**Now the million dollar question... Is he peeing a lot because his sugar is to high or because he is getting 3000cc?? She claims the blood sugar needs to be stable.. and then we need to re-address question 1... because it is a vicious cycle!!
**Why is he on so much blood pressure medication?? Because we have always had blood pressure issues... She, stopped one (thank god because I hated it), weaned another, and went up on one... We will monitor his blood pressure twice a day.
**Kidney stones... we need to do a 24 hour urine.. but the results won't be correct with the sugar and all the peeing... She would also like to monitor what he takes in vs what he put out by measuring it daily!!
Gastroenterologist visit...
He needs to cut back on his calories... can't believe that!! When we started with doctor Devin was in the 13% for BMI (body mass index) now we are in the 91%... impressive!! only problem... being to heavy will increase his blood pressure, make it harder to manage his diabetes, and put more of a strain on his kidneys... So the simple solution was to cut the calories in his formula... Weigh in, in 3 weeks LOL He is 58 lbs!!
Endocrinologist...
Of course I ran home from the nephrologist and tortured the endocrinologist and his nurse practitioner with e-mails... we have to fix this!!! LOL and so they did... we are now on the insulin pump and adjusting slowly but surely!!
Pulmonologist..
We missed because of his stomach virus...
Neurologist..
As I have posted in the past Devin has had a complete change in personality and behavior... He had a neuro assessment and the neurologist feels it could be an interaction between all the meds he is on... The sudden change could be that overall Devin's body is doing better he has intestines that are absorbing, he liver function is better, and his metabolism has probably improved.. Before transplant and after transplant it required higher doses of medication to get the job done... Maybe this is no longer the case and he is over medicated... The plan, between now and July we hope to wean him off some of these medication and see how he does.. The real goal is to not add any new medications... He also recommended a behavioral therapist who may be able to help Devin sort out his feelings and help us deal with a chronically sick child...
and that wraps up one week in the life of Devin... Hoping to enjoy the weekend and soak up the sunshine!!
ONE DAY AT A TIME.... ONE STEP AT A TIME... & PRAYERS!!!
Special Prayers
Submitted by Colleen and Derrick on Tue, 04/27/2010 - 10:40am.Special prayers today for Thomas... Thomas is being kept very comfortable, but he is fading... I am so sad and my heart breaks for Tina, Chuck, & Zach.. Why should any family have to go through this.. Why should any child have to suffer??
May God watch over Thomas and bless his little soul! We will hold Thomas in our hearts forever...
Balance...
Submitted by Colleen and Derrick on Fri, 04/30/2010 - 5:38pm.
We weathered our first GI Bug... one night of vomiting... but days of diarrhea.. Thank God his labs look good and he is maintaining his anti-rejection drug levels... so we will continue to monitor this.. Being that he has had an intestinal transplant it will take him longer then average to get over this type of illness.. as long as he tolerates more in then out and no fever, we are ok!!
He was started on the insulin pump Tuesday so we are adjusting.. This was originally the plan but of course it takes time for the insurance company to approve it.. Thanks to some good friends and coworkers we have a loaner for the time being..
All our doctor visits...
Nephrologist... we went to discuss kidney stones but their were more pressing issues to her..
** Why is he on 3000cc (100 oz) of fluid per day?? I think to protect his kidneys from the anti-rejection drugs... She, claims it will not help and it is far to much fluid for a kid his size...
**Why does he have sugar in his urine?? Because he is a new diabetic that we are trying to regulated... She says, he needs an insulin pump ASAP to gain better control... Tell that to the insurance company!!
**Now the million dollar question... Is he peeing a lot because his sugar is to high or because he is getting 3000cc?? She claims the blood sugar needs to be stable.. and then we need to re-address question 1... because it is a vicious cycle!!
**Why is he on so much blood pressure medication?? Because we have always had blood pressure issues... She, stopped one (thank god because I hated it), weaned another, and went up on one... We will monitor his blood pressure twice a day.
**Kidney stones... we need to do a 24 hour urine.. but the results won't be correct with the sugar and all the peeing... She would also like to monitor what he takes in vs what he put out by measuring it daily!!
Gastroenterologist visit...
He needs to cut back on his calories... can't believe that!! When we started with doctor Devin was in the 13% for BMI (body mass index) now we are in the 91%... impressive!! only problem... being to heavy will increase his blood pressure, make it harder to manage his diabetes, and put more of a strain on his kidneys... So the simple solution was to cut the calories in his formula... Weigh in, in 3 weeks LOL He is 58 lbs!!
Endocrinologist...
Of course I ran home from the nephrologist and tortured the endocrinologist and his nurse practitioner with e-mails... we have to fix this!!! LOL and so they did... we are now on the insulin pump and adjusting slowly but surely!!
Pulmonologist..
We missed because of his stomach virus...
Neurologist..
As I have posted in the past Devin has had a complete change in personality and behavior... He had a neuro assessment and the neurologist feels it could be an interaction between all the meds he is on... The sudden change could be that overall Devin's body is doing better he has intestines that are absorbing, he liver function is better, and his metabolism has probably improved.. Before transplant and after transplant it required higher doses of medication to get the job done... Maybe this is no longer the case and he is over medicated... The plan, between now and July we hope to wean him off some of these medication and see how he does.. The real goal is to not add any new medications... He also recommended a behavioral therapist who may be able to help Devin sort out his feelings and help us deal with a chronically sick child...
and that wraps up one week in the life of Devin... Hoping to enjoy the weekend and soak up the sunshine!!
ONE DAY AT A TIME.... ONE STEP AT A TIME... & PRAYERS!!!
Special prayers today for Thomas... Thomas is being kept very comfortable, but he is fading... I am so sad and my heart breaks for Tina, Chuck, & Zach.. Why should any family have to go through this.. Why should any child have to suffer??
May God watch over Thomas and bless his little soul! We will hold Thomas in our hearts forever...
First Time For Everything...
Submitted by Colleen and Derrick on Sat, 04/24/2010 - 7:57pm.
Well we are weathering our first stomach virus ever! and to add to that challenge... diabetes!! It could be a long night!!
Had our doctors appointments yesterday and honestly nothing great to report.. a lot of little adjustments... came off one blood pressure med, increased another, further urine tests, and having his blood sugar monitored via a sensor because even though his numbers look good he has sugar in his urine.... the nephrologist wants tighter control of his diabetes... before we deal with the kidneys...
As you all have witnessed before it is a balancing act with Devin.... try though I may, one I have not been able to master!! so I will continue to try!! Step 1 is getting him on an Insulin pump...
Pray that tonight we can avoid the emergency room!! and we can have a speedy recovery from this stomach virus!!!
PLEASE! continue to pray for Tina and Thomas... Thomas is being kept comfortable.... and Tina's strength amazes me!!! She is trying very hard to prepare Zachary (her 7 year old). Tina & Chuck my prayers are with you!!!
Today my dear friend Tina needs our prayers... Thomas, Devin's little transplant friend... whom we have spent plenty of time with down in DC is dying.. My heart is so heavy!! I wish I could be their with Tina to help her..
Today I pray for Tina's strength and Thomas's comfort!
Thanks!!!
you can visit Thomas's site
www.caringbridge.org/visit/babythomas2
Quick Update...
Submitted by Colleen and Derrick on Mon, 04/19/2010 - 3:40pm.
Nothing and A Lot... all in one breath... many are asking how is Devin.. well, bowel wise and transplant.. he seems to be doing good... NO signs or rejection.. no belly pain, no vomiting and tolerating everything under the sun. Diabetes... still adjusting!! NOT thrilled to have his finger poked multiple times a day and the insulin injections he really hates... We see the kidney doctor, GI doctor, and lung doctor all Friday.. I am hoping they will have some answers... the kidney stone issue needs to be worked out. I am hoping that once we work that out we will be able to come off some of the blood pressure medication, possible decrease the amount of fluid it takes to hydrate him daily, and improve his kidney numbers...
Our BIGGEST challenge right now (as I type because you all know that can change minute to minute) is his mood and affect... AAAHHHH someone somewhere help me!! Yes me!! I am trying so hard to sort through a very difficult situation... Devin has NOT been the same since his Swine Flu episode in October.. But honestly it has gotten worse since January... MOODY, NASTY, GRUMPY, TANTRUMS, or SOUND ASLEEP but not during the night.. he cries on and off!!!
As wanna be doctor mom LOL!!! I'm trying to piece all this together... He is on 2 drugs for immune suppression, steroids, 3 blood pressure meds, Asprin, and a stomach med... Now where do I begin.. I looked up all these drugs and spoke to my friend who is a pharmacist... 6 cause depression, mood swings, and drowsiness... mix them all together and what do they cause?
I noticed a difference in Devin when he was on Rapamune, one of the immune suppression drugs. Last week we stopped it as a trial.. honestly the tantrums were better but not better enough to keep him off it... we had to do the whole risk benefit thing.. I am taking him to the neurologist next week because I honestly don't know where to turn next.. those that new him before... with his happy go lucky way.. contagious laugh... big brown eyes... and love of life... its gone!!!
Life since October has NOT been easy or good!! every day is a struggle in some way. He wasn't even happy in Disney... I know this is not his fault but sometimes it is so easy to loose site of.. Honestly at this point their is nothing good happening... every day in school seems to be negative, when he is home he lays around and sleeps, he goes out for short periods of time and does nothing but argue with the kids... I AM TIRED, FRUSTRATED, and JUST PLAIN FET UP WITH IT ALL!!!!
Today I asked them to postpone his Make A Wish... he is waiting for this.. but I can not and will not take him in this state... He will probably sleep through it or end up crying... I need to work out these issues first... I no longer look at the whole day... I take it hour by hour and pray that at the end of a day the good hours out weigh the bad!!
Prayers Please!!!
Anyone with any suggestions, I'd love to hear from you!!!
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