Monday Madness

Hello Again
It has been a fast and furious few days since we spoke. .

We have been running around trying to get in as much as we could these last few days in terms of what needs to get done for her assessment and what Mom can do for her assessment.

Since I last posted she has had a GI Consult, Social Work meeting with Mom and Dad , Abdominal Scan, Infectious Disease Consult- We were able to nix the Dental Exam, Bone Scan, XRAys.. She is pretty much over illness but we are basically here still keeping her to finish tests.. We were told she should be able to finish all of her immunizations this week as well -

Tomorrow we both do our Tissue Type Testing (the 8 vials of blood test)- I was getting pretty upset last week because they told me we would have to get the results back before moving forward with the evaluation which takes 10-14 days- But through God's goodness -and my persistence. .we were able to get special permission from Peggy (my person that handles all my evaluation stuff) for me to start my stuff sooner- So tomorrow I go 730 am to get my blood drawn, she also arranged for me to have all the rest of my blood drawn for the rest of the testing I will need, then I come to her office at 815am and try to do Chest Xray and EKG, when that's over I can do my fist session of education classes (for me ) at 10-11.. That just leaves: The rest of the education sessions, financial aid person, social work consult, kidney dr consult, cat scan, surgeon consult and testing and donor advocate.. phew - I am hopeful I can complete all this by the beginning of January. . I REALLY hope I am a match..

Some things we have to consider is that they are not going to push Maddie to do this if she is not ready (IE she is not physically well enough to do it- if she has any kind of viral thing going on..even a cold), she still has this ongoing puking issue which they are concerned about because there are meds she absolutely cannot throw up once the surgery is over.. and if she throws them up and starts rejecting kidney -that is bad news bears, the Dr's say they are still concerned about me and my health.. but I feel like I am young and why wouldn't I bounce back easily?

Something also came up today that is of concern also- As mentioned Madeline has been puffy the last few days. .they initially attributed this to her urinating less- However, they do believe there is a possibility that this could be leaked to her losing protein in her urine. When you do not have a lot of protein you tend to swell up- Why is this an issue you ask? Because when you are protein deficient you tend to have blod clots- blod clots and kidney transplant surgery do not mix well.. how do you avoid this? By removing the diseased kidneys 6 wks prior to getting a new kidney. .which means.. .. DIALYSIS.. so all this rush and effot to get the evaluation done could be worthless if she ends up on dialysis anyways- not to mention the extra surgery... they would probably put her cathater in for periteneal dialysis then when they do the surgery and start immediately instead of waiting 2 weeks. .we won't know for sure if this is the true issue behind the swollenness until we monitor her protein more closely



I could write more but honestly I am too exhausted to go further

this has been a very tiring and emotional week

pray for our strength

Thanks everyone

we have had some great blessings lately

 thanks for all the meals and special prayer times!

 We love all of you!