July 29th 2009
Wow!! What a whirlwind day yesterday. We drove to Auburn Mass on Monday afternoon to my girlfriend Michelle's house, where she was the greatest hostess, with an 11 month old I might add. My mother-in-law flew in from Virginia Beach, so it was the the 5 of us including my girlfriend who knows the city of Boston very well that went to Children's. The hospital is amazing. It looks like a hands on children's musuem. It really is beautiful and exceptionally clean. Everyone we encontered from the door man to the front desk people, to the cafertia staff and especially all the members involved with the transplant program were all so nice!! We were all very impressed, it was almost like it wasn't real, but it was. The day started off with the ususal check, height, weight, urine and a quick physical exam. We then had a 45 minute break before we sat down with the whole team and spoke about how this whole process works. It looks like Bridgette will not be put on a transplant list only because we have 9 possible donors including Mark and I. They state that a live transplant is beter than a deceased donor, so they will explore the possibilities of these donors first. If none of us are a match then they would put her on the list which they state is fast tracked. They told us a story of a child who left the hospital only to be called back in 12 hours due to a kidney match. This is an unusual case they said but usually once on the list it could go fairly quickly, like 2-5 months. Bridgette needs a series of evaluations before being able to receive a kidney. She needs to have a hearing and eye test which will be done in Albany. They both have been scheduled already for the 7th of August. Bridgette has had a xray already of her chest and spine so they are being faxed over from SVMC in Bennington to Boston for a pediatric ortho doctor to read. Bridgette will need the rest of her testing done in Boston, she will have a full urology work-up which will be checking her kidneys and bladder and all the parts that connect each other to make sure that there is no structural damage. They stated that usually with transplant they leave the old kidneys in the body but if they have some structural damage then she would need surgery 3 weeks prior to having her transplant to remove the old kidneys. They stated the length of stay in the hospital would probably be 2-3 days depending if there were any complications. Bridgette also needs an infectious disease consult to make sure she is up to date on all immunizations as well as any needed shots to be given before transplant. All dental records of the last 3 years were also sent to Boston, they are extremely thorough. Today the 29th she had a MRI of her brain before dialysis to check her pituary gland for a possible tumor, keep your fingers crossed!! One thing that I can't believe through all of this or maybe I should actually say I can believe it, what an amazing child Bridgette is. She breaks down everyone once in a while but it lasts about 1 minute and then composses herself and states "I"m sorry mom, how are you and daddy feeling?" Is Matthew going to be alright with all of this? What an amazing child. Bridge found out that she would miss some school and this sent her into a tizzy, not the fact that she will be going through all this testing and surgery, but that she will be missing school. I assured her that I would have Matthew send her all her school work home to her, and this made her feel better and that was that. Thank you everyone for all the love and support, I really can't say this enough. Mark and I really are so appreciative that words cannot express it. I will keep this updated as much as possible, love to everyone
Megan and Mark
Wednesday, July 29, 2009
Friday, July 24, 2009
July 24, 2009
Hi everybody, dialysis is going well today, but we got a surprise when we came in. The endocronologist wants a MRI of Bridgette's brain, so we will hopefully be able to get that today. The doctor wants to see if she has a tumor on her pituary gland, her reason is because of the kidney disease and short stature combination. Hopefully there is no tumor or if there is one, it will be the kind that doesn't need to be treated. Unable to get an appointment with a pediatric orthopaedic doctor until the 15th of October, so they are trying to set up one when we go to Boston on the 28th. She needs to see this doctor about the degree of her scolosis. They want to start a growth hormone immediately which is common with renal failure, and they need to monitor this because the scolosis could possibly worsen with this medication. I believe everyone who is being tested has there kits already from Boston. Labs need to be drawn first thing Monday morning the 27th and then overnighted to Children's in Boston. If anyone hasn't received there kits, please call me. Bridgette wants to let everyone know that she is "hanging in there" and that she thanks everyone for all the love and support.
Thanks again, Love Megan and Mark
Hi everybody, dialysis is going well today, but we got a surprise when we came in. The endocronologist wants a MRI of Bridgette's brain, so we will hopefully be able to get that today. The doctor wants to see if she has a tumor on her pituary gland, her reason is because of the kidney disease and short stature combination. Hopefully there is no tumor or if there is one, it will be the kind that doesn't need to be treated. Unable to get an appointment with a pediatric orthopaedic doctor until the 15th of October, so they are trying to set up one when we go to Boston on the 28th. She needs to see this doctor about the degree of her scolosis. They want to start a growth hormone immediately which is common with renal failure, and they need to monitor this because the scolosis could possibly worsen with this medication. I believe everyone who is being tested has there kits already from Boston. Labs need to be drawn first thing Monday morning the 27th and then overnighted to Children's in Boston. If anyone hasn't received there kits, please call me. Bridgette wants to let everyone know that she is "hanging in there" and that she thanks everyone for all the love and support.
Thanks again, Love Megan and Mark
Wednesday, July 22, 2009
July 22
Hi everybody! Bridgette is doing great. We are still having treatments every M/W/F. About 1/2 way through the treatments Bridge feels like she is going to be sick, but doesn't actually, so they are slowing up on the amount of fluid they are pulling off of her. She is still making urine so this is a very good thing since anything she puts out I can add to her daily intake. Bridge just went to a Pediatric endocronologist. These doctors deal with metabolism( thyroid, pancreas, growth, etc.) Bridgette is short in stature, so they want to start giving her daily growth hormone injections. They state that one of the side affects of end stage renal failure is short stature, but won't start this until after they talk with Boston. If we find a match they will wait until after the transplant takes place, if we don't find a match then they will begin. It will be a daily injection into her stomach. When Bridgette had an xray of her chest at her well visit they also discovered that she has developed scolosis. With the growth hormone shots this most likely, but not always, will worsen the scolosis, so she has to now go see a pediatric orthopaedic doctor to measure how severe the scolosis is. That is a whole other story, because with this they could possibly have to put rods in her back to correct it, but I'm not even going there at this point, hopefully a brace will be the answer. Bridgette and I our at the lake mostly, only back in VT 1 day a week. We want to thank everyone again for all the love and support that has been given to our family. We also want to thank everyone for organizing the benefit that is coming together for Bridge. It is very hard for Mark and I to ask for help, we are so used to making sure that everything is just right for everyone else and that our friends and family feel comfortable when they are with us. It is very out of the ordinary to need help and to except the help, but from the bottom of our hearts we are greatly moved and touched by all the love and support.
With much love,
Mark and Megan
Hi everybody! Bridgette is doing great. We are still having treatments every M/W/F. About 1/2 way through the treatments Bridge feels like she is going to be sick, but doesn't actually, so they are slowing up on the amount of fluid they are pulling off of her. She is still making urine so this is a very good thing since anything she puts out I can add to her daily intake. Bridge just went to a Pediatric endocronologist. These doctors deal with metabolism( thyroid, pancreas, growth, etc.) Bridgette is short in stature, so they want to start giving her daily growth hormone injections. They state that one of the side affects of end stage renal failure is short stature, but won't start this until after they talk with Boston. If we find a match they will wait until after the transplant takes place, if we don't find a match then they will begin. It will be a daily injection into her stomach. When Bridgette had an xray of her chest at her well visit they also discovered that she has developed scolosis. With the growth hormone shots this most likely, but not always, will worsen the scolosis, so she has to now go see a pediatric orthopaedic doctor to measure how severe the scolosis is. That is a whole other story, because with this they could possibly have to put rods in her back to correct it, but I'm not even going there at this point, hopefully a brace will be the answer. Bridgette and I our at the lake mostly, only back in VT 1 day a week. We want to thank everyone again for all the love and support that has been given to our family. We also want to thank everyone for organizing the benefit that is coming together for Bridge. It is very hard for Mark and I to ask for help, we are so used to making sure that everything is just right for everyone else and that our friends and family feel comfortable when they are with us. It is very out of the ordinary to need help and to except the help, but from the bottom of our hearts we are greatly moved and touched by all the love and support.
With much love,
Mark and Megan
Wednesday, July 15, 2009
July 15, 2009
Good Afternoon, we are so thrilled with all the love and support, from the phone calls to the flowers and gifts to the hugs and kisses to the emails and comments on the blog, we are so blessed to have so many friends and family!! Mark and I as well as Bridge and Matthew thank everyone from the bottom of our hearts.
Love,Megan
P.S. If it is easier to contact us, our email is aiko82893@yahoo.com
Good Afternoon, we are so thrilled with all the love and support, from the phone calls to the flowers and gifts to the hugs and kisses to the emails and comments on the blog, we are so blessed to have so many friends and family!! Mark and I as well as Bridge and Matthew thank everyone from the bottom of our hearts.
Love,Megan
P.S. If it is easier to contact us, our email is aiko82893@yahoo.com
Monday, July 13, 2009
July 13th, 2009
Hi everybody, Bridge had a good day in dialysis, lab values are still really off, so she is getting added juice so to speak to her dialysis treatment. Her dietary restrictions were somewhat lifted today, meaning she can have more potassium and sodium in her diet, will do a recheck of labs on Wes. Boston called today and told me that if anyone is interested in having there blood drawn to see if the are a match for the first part of testing, I would need to get information like, names, demographics and ss# only because they have run into people from all over the country who occasionally have the same name and birthdate. I was told after I collected the information and they entered it, a package would be sent I think to the individuals home . They are asking for people interested in seeing if they are a doner to take this package and go have labs drawn on the 27th of this month, they then would be overnighted free of charge by Fed X to Boston. Our appointment is the 28th for Boston. At this time they will check Mark and I to see if we can be donors and review the results of the other lab tests. As most of you know Bridge unfortuantely will need probably 2-3 transplants in her life time. We do not know if either Mark or I wil be a match, so we are trying to broadend the field as wide as possible.
Thanks again for all the support!!!
Love Megan and Mark
Hi everybody, Bridge had a good day in dialysis, lab values are still really off, so she is getting added juice so to speak to her dialysis treatment. Her dietary restrictions were somewhat lifted today, meaning she can have more potassium and sodium in her diet, will do a recheck of labs on Wes. Boston called today and told me that if anyone is interested in having there blood drawn to see if the are a match for the first part of testing, I would need to get information like, names, demographics and ss# only because they have run into people from all over the country who occasionally have the same name and birthdate. I was told after I collected the information and they entered it, a package would be sent I think to the individuals home . They are asking for people interested in seeing if they are a doner to take this package and go have labs drawn on the 27th of this month, they then would be overnighted free of charge by Fed X to Boston. Our appointment is the 28th for Boston. At this time they will check Mark and I to see if we can be donors and review the results of the other lab tests. As most of you know Bridge unfortuantely will need probably 2-3 transplants in her life time. We do not know if either Mark or I wil be a match, so we are trying to broadend the field as wide as possible.
Thanks again for all the support!!!
Love Megan and Mark
Friday, July 10, 2009
July 10, 2009
Good morning, Bridgette had the iv dye check in her dual lumen cath due to pain, everything came back negative. The problem was the sutures attached to her cath and into her skin, they snipped these off and put a new lock so the cath won't slip out. Bridge is much happier with this. Dialysis is going fine this am but is very weepy due to the fact that Miss Tish couldn't sleep until noon, we were at the Medical center at 7:10am, she'll eventually get used to the early mornings. We will be at the lake for the whole weekend and back on Monday to Albany. Have a great weekend!!
Megan
Good morning, Bridgette had the iv dye check in her dual lumen cath due to pain, everything came back negative. The problem was the sutures attached to her cath and into her skin, they snipped these off and put a new lock so the cath won't slip out. Bridge is much happier with this. Dialysis is going fine this am but is very weepy due to the fact that Miss Tish couldn't sleep until noon, we were at the Medical center at 7:10am, she'll eventually get used to the early mornings. We will be at the lake for the whole weekend and back on Monday to Albany. Have a great weekend!!
Megan
Thursday, July 9, 2009
July 9th 2009
Hi everyone,
As most of you know already, Brigette had a routine doctor's visit on the first of July. I had been noticing that Bridge was paler than usual and not eating or going the bathroom as much. When I got to the doctor's office, I asked if certain type of labs could be drawn on her, thinking that most likely she was just slighty anemic, and to Mark and my surprise it was so much more. Bridgette is in End Stage Renal Failure. So far from what I understand, there are 5 stages with 1 being the least, she is stage 5. Bridgette was immediately sent to Albany Medical Center where she had minor surgery to implant a central line to receive her dialysis. We were in the pediatric ICU for 3 days and then released to have outpatient dialysis every mon/wes/fri. We had a date on the 14th of July at Children's hospital in Boston, but then quickly got a call back from the coordinator stating that the doctor thought that her lab work still wasn't good enough so we are now scheduled for the 28th. In the meantime, like I said she is having treatments 3x a week. She has been having pain with the manipulation of the dual lumen central line, so they think that she might have a clot, they did an ultrasound on Wes but that was negative, they are doing another test this Friday morning before her dialysis at 7:30. Bridge is also now on a special diet, limiting potassium/sodium/phorporus. She is also on a fluid restriction to 1 liter a day only. Mark and I have to measure everything going in and everything going out of her body, so if she voids 200ml, we can add that to her intact that day, etc. Menus have to be created due to the dietary restrictions now and strictly adhered to. We are praying that Mark and I will be a match when it comes down to testing, but the dialysis nurse informed us that kidney transplants last only 10-20 years at the max, so she will most likely need 2, possibly 3 in her lifetime since she is so young. Bridge has been a trooper through all of this, she is scared but is actually braver than Mark and I, she is definetly our teacher. I want to thank everyone for all there love and support which has been absolutely amazing. Bridgette is a special girl that has touched many hearts and I am so proud to be her mom. I will give updates now that I am back online.
Thanks so much and love to all, Megan&Mark
P.S. Matthew has been such a good boy through all of this, I am so proud of him. Bridgette still states that the best thing since this has happened is the dog Matthew got for her while in the hospital, she brings it everywhere with her and lets everyone know that her "brother" gave it to her.
As most of you know already, Brigette had a routine doctor's visit on the first of July. I had been noticing that Bridge was paler than usual and not eating or going the bathroom as much. When I got to the doctor's office, I asked if certain type of labs could be drawn on her, thinking that most likely she was just slighty anemic, and to Mark and my surprise it was so much more. Bridgette is in End Stage Renal Failure. So far from what I understand, there are 5 stages with 1 being the least, she is stage 5. Bridgette was immediately sent to Albany Medical Center where she had minor surgery to implant a central line to receive her dialysis. We were in the pediatric ICU for 3 days and then released to have outpatient dialysis every mon/wes/fri. We had a date on the 14th of July at Children's hospital in Boston, but then quickly got a call back from the coordinator stating that the doctor thought that her lab work still wasn't good enough so we are now scheduled for the 28th. In the meantime, like I said she is having treatments 3x a week. She has been having pain with the manipulation of the dual lumen central line, so they think that she might have a clot, they did an ultrasound on Wes but that was negative, they are doing another test this Friday morning before her dialysis at 7:30. Bridge is also now on a special diet, limiting potassium/sodium/phorporus. She is also on a fluid restriction to 1 liter a day only. Mark and I have to measure everything going in and everything going out of her body, so if she voids 200ml, we can add that to her intact that day, etc. Menus have to be created due to the dietary restrictions now and strictly adhered to. We are praying that Mark and I will be a match when it comes down to testing, but the dialysis nurse informed us that kidney transplants last only 10-20 years at the max, so she will most likely need 2, possibly 3 in her lifetime since she is so young. Bridge has been a trooper through all of this, she is scared but is actually braver than Mark and I, she is definetly our teacher. I want to thank everyone for all there love and support which has been absolutely amazing. Bridgette is a special girl that has touched many hearts and I am so proud to be her mom. I will give updates now that I am back online.
Thanks so much and love to all, Megan&Mark
P.S. Matthew has been such a good boy through all of this, I am so proud of him. Bridgette still states that the best thing since this has happened is the dog Matthew got for her while in the hospital, she brings it everywhere with her and lets everyone know that her "brother" gave it to her.
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