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