August 31, 2009
I can't believe that summer is over, did we even have a summer? The news as of today, as we know it can change hourly, but as of right now at 9:30am we are waiting for Boston to send new blood vials too the 3 remaining that are a potential match for Bridge. They will have their blood drawn again and send it via fedx back to Boston. They are going to do the sensitive testing automatically so the potential donors do not have to go through all the testing that I went through. Once we know either yes or no we can go from there. If no one is a match than we either put it out there again or we put her on the waiting list. I don't know as far as school goes what will happen. It is day by day at this point. Even if we have a match we don't know if they will have enough time to get all of the appropriate tests that are needed done before the scheduled surgeries, so what does this mean? Do we get pushed to October since they reserve only 1 live transplant surgery a month, or does someone already have that slot since we orginially were in September. Does this mean then if she gets pushed back to Ocotober or November for the transplant will she have to wait for the first surgery or will that still be done next week? I just wish everything was in order, it is driving me crazy not knowing. Dialysis is going well and Bridgette is eating like a horse now, even though she is not gaining weight, hopefully she will have a growth spurt. That is a whole other subject. We saw the ped. ortho doctor and he wants to start growth hormone therapy, just waiting as usual to hear from Boston before I start administering that daily shot. Thanks again for all the support everyone. We love you guys.
Megan and Mark
Monday, August 31, 2009
Wednesday, August 26, 2009
Hi everybody, some bad news, Boston called and told me that I am not the match. Further testing that just became available the last 2 years showed that Bridgette has this antigen in her blood that they don't know where it came from, when mixed with mine, bridgette's body will eventualy reject it. They did repeat testing to make sure, but unfortunately the results came back where I am not the match. Prior to this new testing I would have been the match. I am absolutely devatasted. I can't believe this is happening. How much more can our family take? Bridge is beside herself. I quickly stopped crying and put a whole new spin on it, telling Bridgette that now I would be able to be with her when she went under and that I would be with her when she woke up. I also said that now I would be able to sleep in her room with her every night. This made her happy. We are supposed to have a conference call with Boston tommorrow about our options. So many questions, does this postpone the surgeries? I have no idea. We will hopefully find out as soon as possible if we are going to be able to stay on the targeted dates of the 10th for the first sugery and then the 24th for the transplant. I can't believe the road that God has taken us on, there has to be a reason why, but so far I don't know why. I don't know what else to say.
Megan
Megan
Monday, August 24, 2009
August 24th, 2009
Hi, we are in Boston today. We had to meet with the chief of nephrology, due to the fact that with more sensitive testing, they found an anitgen in Bridgette's blood that could possibly not work with mine. We came in today to discuss our options. They stated that before this test which became available 2 years, they would have automatically still gone with me as the donor, but this more sensitive test raises questions as to whether I am the perfect match for her. Bridge and I had to have blood drawn again today for even more sensitive testing, and this is either yes or no answer. We should know in about 1-2 days if I will continue on to be the donor. In the mean time I still had to meet with my adult nephrologist and they went over all my testing. They stated that they wanted to do an echocardiogram due to my chest xray showing a slighty enlarged aorta. They also wanted to due a fasting blood sugar as well as for me to monitor my blood pressure 2x a day for 1 week. My pressure is slighty high, 133/82 and they won't even consider me if they suspect high blood pressure. They want me in the 120/70 range instead. Bridgette just finished having spinal films and we are currently in dialysis, it is 12:35. We should finish around 3pm and then we go to meet with the pediatric ortho doctor to review her films and determine if she will start getting her growth hormone shots. Please everyone who reads this, pray extra hard these next couple of days to make sure that Bridge and I and all my tests come back + and that I am still the match, I don't know what we will do if I'm not, it will throw the transplant off if it doesn't work, so keep your fingers crossed.
Thank you,
Love Megan
Hi, we are in Boston today. We had to meet with the chief of nephrology, due to the fact that with more sensitive testing, they found an anitgen in Bridgette's blood that could possibly not work with mine. We came in today to discuss our options. They stated that before this test which became available 2 years, they would have automatically still gone with me as the donor, but this more sensitive test raises questions as to whether I am the perfect match for her. Bridge and I had to have blood drawn again today for even more sensitive testing, and this is either yes or no answer. We should know in about 1-2 days if I will continue on to be the donor. In the mean time I still had to meet with my adult nephrologist and they went over all my testing. They stated that they wanted to do an echocardiogram due to my chest xray showing a slighty enlarged aorta. They also wanted to due a fasting blood sugar as well as for me to monitor my blood pressure 2x a day for 1 week. My pressure is slighty high, 133/82 and they won't even consider me if they suspect high blood pressure. They want me in the 120/70 range instead. Bridgette just finished having spinal films and we are currently in dialysis, it is 12:35. We should finish around 3pm and then we go to meet with the pediatric ortho doctor to review her films and determine if she will start getting her growth hormone shots. Please everyone who reads this, pray extra hard these next couple of days to make sure that Bridge and I and all my tests come back + and that I am still the match, I don't know what we will do if I'm not, it will throw the transplant off if it doesn't work, so keep your fingers crossed.
Thank you,
Love Megan
Wednesday, August 19, 2009
August 19, 2009
Hi everbody, we are in Boston. We got here Tuesday and had 1 appointment for Bridge at the infectious disease doctor. Before this I dropped off all my"samples" to the lab and then had my blood drawn. At the infectious disease doctor, they went over all the things that Bridge should not eat or be exposed to after transplant, a common cold, etc. They also went over her immunizations as well as what shots they want before transplant. She will get 3 shots today and then 3 on Friday. We were at the hospital from about 10am to 3 pm. We then proceded to check into our hotel which was located about 7/10 of a mile from the hospital. We walked into our room and then quickly walked back out, it was gross. We then called the Marriot which was very close. We programmed it in to our navatigation system which then proceded to take us all through Boston, we got to the new hotel in 1 hour and it was literally a stone through from the old hotel. Needless to say we all had a drink after this one. Today is Wed and we had our first appointment at 7:45. It was called a VCUG test. This test involves inserting a catheter into bridgette and then filling her bladder with a warm solution and then under radiology can view if her kidneys have any reflux which they do. We saw the urologist after this and he informed us tht he wouldn't have to do surgery to have her native kidneys removed, that he could do it at the time of transplant. (All kidney patients that have reflux have to have surgery to remove there kidneys prior to transplant.) We were so happy because we thought that she would need surgery. Then we proceded to see the transplant surgeon about 1 hour later and he stated that he spoke with the urologist and he wants Bridgette to have surgery prior to transplant. He states that he doesn't want to have to think about anything else but transplant. He states that Bridgette will be under for about 6 hours and doesn't want to have her under any longer than that. Tentative date is set for the 10th of September, they can't get her in any sooner will call us if they can. Bridgette will be in the hospital for this procedure for 4-5 days and transplant will be for 2 weeks if no complications. We are so bummed, we got our hopes up to quickly after the urologist. We haven't told Bridge yet, we will when we get in the comforts of our home. She will be upset about missing school, not the surgery so much but school. We have another 1.5 hours until we are done with dialysis in Boston and then onward home, we should be back aroun 7pm tonight.
That is all for now
Megan and Mark
Hi everbody, we are in Boston. We got here Tuesday and had 1 appointment for Bridge at the infectious disease doctor. Before this I dropped off all my"samples" to the lab and then had my blood drawn. At the infectious disease doctor, they went over all the things that Bridge should not eat or be exposed to after transplant, a common cold, etc. They also went over her immunizations as well as what shots they want before transplant. She will get 3 shots today and then 3 on Friday. We were at the hospital from about 10am to 3 pm. We then proceded to check into our hotel which was located about 7/10 of a mile from the hospital. We walked into our room and then quickly walked back out, it was gross. We then called the Marriot which was very close. We programmed it in to our navatigation system which then proceded to take us all through Boston, we got to the new hotel in 1 hour and it was literally a stone through from the old hotel. Needless to say we all had a drink after this one. Today is Wed and we had our first appointment at 7:45. It was called a VCUG test. This test involves inserting a catheter into bridgette and then filling her bladder with a warm solution and then under radiology can view if her kidneys have any reflux which they do. We saw the urologist after this and he informed us tht he wouldn't have to do surgery to have her native kidneys removed, that he could do it at the time of transplant. (All kidney patients that have reflux have to have surgery to remove there kidneys prior to transplant.) We were so happy because we thought that she would need surgery. Then we proceded to see the transplant surgeon about 1 hour later and he stated that he spoke with the urologist and he wants Bridgette to have surgery prior to transplant. He states that he doesn't want to have to think about anything else but transplant. He states that Bridgette will be under for about 6 hours and doesn't want to have her under any longer than that. Tentative date is set for the 10th of September, they can't get her in any sooner will call us if they can. Bridgette will be in the hospital for this procedure for 4-5 days and transplant will be for 2 weeks if no complications. We are so bummed, we got our hopes up to quickly after the urologist. We haven't told Bridge yet, we will when we get in the comforts of our home. She will be upset about missing school, not the surgery so much but school. We have another 1.5 hours until we are done with dialysis in Boston and then onward home, we should be back aroun 7pm tonight.
That is all for now
Megan and Mark
Friday, August 14, 2009
August 14, 2009
Can you believe that it is half way through August already, how quickly this summer went. Bridgette's eye exam with the retina specialist showed some scarring which they believe is old, possibly from a infection of some sort. Bridge's blood cultures came back with no growth which is good. We went back today for another test where they put in a iv and then injected her with dye, this was less tramatic this time but still cried. Tests came back with no active inflammation going on but did show some loss of pigment perpherially. This is unusual and haven't seen this before but so will be watching closely have to go back in 3 weeks and then probably every 3 -6 months to track it, eye sight isn't effected at this time, thank god. This Tuesday we go to Boston for testing for myself, I have to give blood again as well as have a 24hour urine and a urine analysis and culture as well as chest xray and ekg. My favorite part is going to be the stool sample to check for blood, Yeah!! Bridge sees the infectious disease doctor to make sure that she is up to date on all her shots as well as probably get flu and pneumo shots since she won't be able to receive them after transplant. Then our day is done. On Wed Bridge has a VCUG test which checks the flow of urine. If Bridge has back flow(reflux) and doctors forsee a problem she will have to have surgery the following week to have her native kidneys removed. This has to be done 3 weeks prior to transplant. She will be in the hospital 2-3 days for this. If things are normal than we will procede with transplant on the 24th of September. After this exam she then sees the urologist to discuss this and then we see the transplant surgeon at 11am. After this we have lunch and then dialysis at 1pm in boston and then back home. On Thursday I have a mammogram, Friday back to dialysis. Monday we have to be back in Boston for me, I have to meet with the adult nephrologist to see if I can continue to be the match, the only reason I wouldn't is if my testing came back negative. If this goes well then I have to have a ct angiogram of my kidneys and bladder then at 3:45 pm Bridgette sees the pediatric orthopaedic doctor to check her scolosis that they discovered. They want to start growth hormone on Bridge before transplant and they need to measure the severity before they can decided if they can give it to her or not. This would be a daily shot subcutaneous. Then I think we are all done until the 24th of September. Bridge starts school on Tuesday the 8th of September. Bridgette will still get dialysis but we are moving it to 1:30pm instead of the morning so Bridgette will be able to go to school on M/W/F from 8:30-11:30 then drive to NY and have dilaysis. She will have a full day on Tues/Thursday. Once transplant happens she will be out of school probably 6-8 weeks. After transplant she will have to go to Boston 2x week, we'll figure out how we are going to go about school. I forgot, we met with the National Kidney Foundation the other day and they gave us information on how to go about raising funds for Bridgette. They told us it would go through their tax ID # so that if corporations , friends or family want to help donate it woud be tax deductible for them. The main point that needs to be addressed is that when making out checks it has to be payable to the National Kidney Foundation and specifically stating for Bridgette Eichhorn or it will go to the Kidney Foundation general fund and not to Bridge. Thank you Tracey for setting up this meeting, I know this was a labored process. Thank you to everyone for all there help with the fund raising, Megan,Michelle,Robin, Keelin, Casey, Brittany, Debbie. Thank you Murph for the latest fund raising efforts, I am amazed. Thank you everyone for all the donations for the silent auction, Megan McMahon has told us some of the generous things already donated. It really is a labor of love with all of this going on and with friends and family like we have we feel truly blessed!!!
Love, Megan and Mark
Can you believe that it is half way through August already, how quickly this summer went. Bridgette's eye exam with the retina specialist showed some scarring which they believe is old, possibly from a infection of some sort. Bridge's blood cultures came back with no growth which is good. We went back today for another test where they put in a iv and then injected her with dye, this was less tramatic this time but still cried. Tests came back with no active inflammation going on but did show some loss of pigment perpherially. This is unusual and haven't seen this before but so will be watching closely have to go back in 3 weeks and then probably every 3 -6 months to track it, eye sight isn't effected at this time, thank god. This Tuesday we go to Boston for testing for myself, I have to give blood again as well as have a 24hour urine and a urine analysis and culture as well as chest xray and ekg. My favorite part is going to be the stool sample to check for blood, Yeah!! Bridge sees the infectious disease doctor to make sure that she is up to date on all her shots as well as probably get flu and pneumo shots since she won't be able to receive them after transplant. Then our day is done. On Wed Bridge has a VCUG test which checks the flow of urine. If Bridge has back flow(reflux) and doctors forsee a problem she will have to have surgery the following week to have her native kidneys removed. This has to be done 3 weeks prior to transplant. She will be in the hospital 2-3 days for this. If things are normal than we will procede with transplant on the 24th of September. After this exam she then sees the urologist to discuss this and then we see the transplant surgeon at 11am. After this we have lunch and then dialysis at 1pm in boston and then back home. On Thursday I have a mammogram, Friday back to dialysis. Monday we have to be back in Boston for me, I have to meet with the adult nephrologist to see if I can continue to be the match, the only reason I wouldn't is if my testing came back negative. If this goes well then I have to have a ct angiogram of my kidneys and bladder then at 3:45 pm Bridgette sees the pediatric orthopaedic doctor to check her scolosis that they discovered. They want to start growth hormone on Bridge before transplant and they need to measure the severity before they can decided if they can give it to her or not. This would be a daily shot subcutaneous. Then I think we are all done until the 24th of September. Bridge starts school on Tuesday the 8th of September. Bridgette will still get dialysis but we are moving it to 1:30pm instead of the morning so Bridgette will be able to go to school on M/W/F from 8:30-11:30 then drive to NY and have dilaysis. She will have a full day on Tues/Thursday. Once transplant happens she will be out of school probably 6-8 weeks. After transplant she will have to go to Boston 2x week, we'll figure out how we are going to go about school. I forgot, we met with the National Kidney Foundation the other day and they gave us information on how to go about raising funds for Bridgette. They told us it would go through their tax ID # so that if corporations , friends or family want to help donate it woud be tax deductible for them. The main point that needs to be addressed is that when making out checks it has to be payable to the National Kidney Foundation and specifically stating for Bridgette Eichhorn or it will go to the Kidney Foundation general fund and not to Bridge. Thank you Tracey for setting up this meeting, I know this was a labored process. Thank you to everyone for all there help with the fund raising, Megan,Michelle,Robin, Keelin, Casey, Brittany, Debbie. Thank you Murph for the latest fund raising efforts, I am amazed. Thank you everyone for all the donations for the silent auction, Megan McMahon has told us some of the generous things already donated. It really is a labor of love with all of this going on and with friends and family like we have we feel truly blessed!!!
Love, Megan and Mark
Saturday, August 8, 2009
August 8th, 2009
Hi guys, Bridge had her two appointments on Friday after dialysis, her audiology(hearing) appointment, that was perfect, then her opthamology(eyes) apointment and that went horrible. They found scarring in Bridgette's eyes and they don't know what it is from. They think it might possibly be a blood infection. We were sent back to the hospital for blood cultures to be drawn, which was a treat with the needles, bridgette was beside herself. We have to wait 5-7 days for results. We spent the entire day from 8am to 7pm going to the hospital then doctors then back to hospital, it was not fun. We have to go see a retina specialist for her eyes on Monday after dialysis to hopefully tell us what it is and what the cause of it is. Her vision is good enough at this point that she doesn't need glasses, but what this scarring is they have no idea. If blood cultures come back positive, I believe that she will have to be admitted to the hospital for iv antibotic theray, usually this is a week, but hopefully I am wrong. I don't know what this means as far as the transplant goes either, will it be post poned?, I'm not sure. We are supposed to go to Boston next week for most of are testing, let's just hope we still can. We are currently at the lake as usual just hanging out with family and friends. I tell ya, I miss home and the normalacy of everyday life and work, if it wasn't for Bridge being so brave, I think I would just be about ready to freak out!! Thank god it isn't raining everyday anymore. Thanks again for all the prayers, love and support.
Megan
Hi guys, Bridge had her two appointments on Friday after dialysis, her audiology(hearing) appointment, that was perfect, then her opthamology(eyes) apointment and that went horrible. They found scarring in Bridgette's eyes and they don't know what it is from. They think it might possibly be a blood infection. We were sent back to the hospital for blood cultures to be drawn, which was a treat with the needles, bridgette was beside herself. We have to wait 5-7 days for results. We spent the entire day from 8am to 7pm going to the hospital then doctors then back to hospital, it was not fun. We have to go see a retina specialist for her eyes on Monday after dialysis to hopefully tell us what it is and what the cause of it is. Her vision is good enough at this point that she doesn't need glasses, but what this scarring is they have no idea. If blood cultures come back positive, I believe that she will have to be admitted to the hospital for iv antibotic theray, usually this is a week, but hopefully I am wrong. I don't know what this means as far as the transplant goes either, will it be post poned?, I'm not sure. We are supposed to go to Boston next week for most of are testing, let's just hope we still can. We are currently at the lake as usual just hanging out with family and friends. I tell ya, I miss home and the normalacy of everyday life and work, if it wasn't for Bridge being so brave, I think I would just be about ready to freak out!! Thank god it isn't raining everyday anymore. Thanks again for all the prayers, love and support.
Megan
Wednesday, August 5, 2009
August 5, 2009
Hi everybody, it finally is offical, I am the match. Boston called today and told me that there were 4 canidates and that in the end, I, the mom was the match. yeah!!!!!!!! I am so nervous but yet so excited. Thank you to all that donated your blood the first time around, and thank you to all that were waiting in the wings, it has meant so much to Mark and I. On the 18th and 19th Bridge and I have to be in Boston for series testing, if everything goes ok then the date for the transplant is the 24th of September. If one of the test doesn't go according to plan than Bridge needs to have her kidneys removed a week after the 18th testing, then she can procede with the 24th transplant. It is so involved, usually they leave in the kidneys in, but if it is a stutural problem with the kidneys, they need to do surgery 3-4 weeks prior and then procede with the transplant. I am so happy but yet so nervous. It is a catch 22 having a little knowledge, I sometimes wish I wasn't a nurse but I am, so , my girls, I'm gonna need help!!!
I will keep everyone updated, thank you so much for all the support tonight, I mean really out of the woodwork people started calling, how did you know? I was at the lake and only spoke with a handful, but everyone seemed to know. Love and thanks to all, Megan
p.s. Bridge and I and Leigh, Miles, Jenny, Daddy and Matthew are going to High School producgtion tommorrow in Washington Park, OMG!!!
Love, Megan
Hi everybody, it finally is offical, I am the match. Boston called today and told me that there were 4 canidates and that in the end, I, the mom was the match. yeah!!!!!!!! I am so nervous but yet so excited. Thank you to all that donated your blood the first time around, and thank you to all that were waiting in the wings, it has meant so much to Mark and I. On the 18th and 19th Bridge and I have to be in Boston for series testing, if everything goes ok then the date for the transplant is the 24th of September. If one of the test doesn't go according to plan than Bridge needs to have her kidneys removed a week after the 18th testing, then she can procede with the 24th transplant. It is so involved, usually they leave in the kidneys in, but if it is a stutural problem with the kidneys, they need to do surgery 3-4 weeks prior and then procede with the transplant. I am so happy but yet so nervous. It is a catch 22 having a little knowledge, I sometimes wish I wasn't a nurse but I am, so , my girls, I'm gonna need help!!!
I will keep everyone updated, thank you so much for all the support tonight, I mean really out of the woodwork people started calling, how did you know? I was at the lake and only spoke with a handful, but everyone seemed to know. Love and thanks to all, Megan
p.s. Bridge and I and Leigh, Miles, Jenny, Daddy and Matthew are going to High School producgtion tommorrow in Washington Park, OMG!!!
Love, Megan
August 5th 2009
I cant believe it has been over a month already since this all began. We are still waiting on Boston to find out the results if there is a match or not. The unoffical MRI report came back negative,no tumor, but the doctor hasn't told this to us yet, this has just been read by the nurse, which we all know are the real doctors, thank god for the good nurses's. Bridgette has been doing really well with dialysis, less tired feeling and more energetic. Bridgette's potassium restrictions are still removed because her levels are still low, so Bridge is thrilled, she gets to eat, potatoes, ketchup, avacados, bananas, etc. Want to send a hugh thank you to all the friends and family that have sent so many wonderful wishes and gifts to our family. We feel so lucky!!!! We also want to send hugh thank you to everyone working on the unbelievable fund raiser/trust that is going to be happening I am told on the 11th of October for Bridgette. I know it is not easy organizing and getting all this done, we know that everyone has there own lifes to live, we just want you to know that we are incredibly touched by all this support. I will wright a new blog the minute I find out about Boston and or any new results. Big day on Friday with dialysis and 2 doctor's appointments, keep your fingrs crossed that Boston lets us know sooner than later.
Love to all,
Megan and Mark
I cant believe it has been over a month already since this all began. We are still waiting on Boston to find out the results if there is a match or not. The unoffical MRI report came back negative,no tumor, but the doctor hasn't told this to us yet, this has just been read by the nurse, which we all know are the real doctors, thank god for the good nurses's. Bridgette has been doing really well with dialysis, less tired feeling and more energetic. Bridgette's potassium restrictions are still removed because her levels are still low, so Bridge is thrilled, she gets to eat, potatoes, ketchup, avacados, bananas, etc. Want to send a hugh thank you to all the friends and family that have sent so many wonderful wishes and gifts to our family. We feel so lucky!!!! We also want to send hugh thank you to everyone working on the unbelievable fund raiser/trust that is going to be happening I am told on the 11th of October for Bridgette. I know it is not easy organizing and getting all this done, we know that everyone has there own lifes to live, we just want you to know that we are incredibly touched by all this support. I will wright a new blog the minute I find out about Boston and or any new results. Big day on Friday with dialysis and 2 doctor's appointments, keep your fingrs crossed that Boston lets us know sooner than later.
Love to all,
Megan and Mark
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