Riley is currently in the hospital at UCLA with his 7th line infection since September. He made it through almost 2 years of dialysis without any infections, and now he is just getting them over and over again. He has already had his catheter replaced 2 times over these last few months. The last time, the surgeon spent 2 1/2 hours trying to put a new catheter in, and found that almost all of Riley's veins and arteries leading to his heart were clotted from previous surgeries and procedures. He ordered an MRI of Riley's veins and found that he only has one open vein left. This was very distressing, but we hoped that he would keep his new catheter and be infection free until his kidney transplant. This obviously did not happen. He has now grown the exact same bug twice in a row from this catheter, and the doctors say it absolutely must come out. They cannot clear the infection from his line this time and need to get it out asap, but getting a new one in may be very difficult. In addition, because his is still infected, he is likely to infect the new catheter once it is put in. He is supposed to go to surgery on Thursday, at which time the surgeon will attempt to put a new catheter in his one remaining vein. PLEASE PRAY that all goes well and that he can get a new catheter and that it stays infection free. We also agreed to have another peritoneal (near the abdomen, home dialysis) dialysis catheter put in at the same time. Riley's doctor hopes that we can do this type of dialysis again (it made him very sick last time we tried) in order to avoid using and reinfecting the hemodialysis catheter. But again, the surgeon is saying that this placement may not be possible due to all of the scar tissue caused by Riley's previous abdominal surgeries. Again, PLEASE PRAY that this placement is possible and that Riley can tolorate this kind of dialysis. Riley needs a kidney transplant as soon as possible so that his life does not depend on these catheters, but he cannot be placed on the list while he is getting infections. I have been worked up and pretty much cleared to give my kidney, but Riley still has antibodies against me (he would still reject my kidney). The doctors plan to use me as a back up if the situation becomes desperate. It would be great if the kidney transplant would be an end to our problems, but it turns out, Riley will always need a central line/catheter in order to have the plasma cleaning procedure that he will need to help keep him from rejecting his new kidney. In addition, he will need to have open veins for future dialysis once his first kidney fails (they don't last forever and Riley will most likely reject his sooner than most people due to his high level of antibodies). He will also require more heart surgeries in his lifetime, and will need central lines placed for those. Brad and I are scared to death that we might lose our baby, not because of his heart defects or kidney failure, but simply because he has no more veins left to access. I don't know how we would go on without him. Please, please pray hard for him and pass this email along. If you know of any churches with prayer chains, please have him added.
Despite all of his problems, Riley continues to be the strongest, most incredible little boy in the whole world. He is not acting sick at all and is walking all over the hospital with his little walker. This child used to be afraid of everybody (with good reason), but has now become so incredibly loving towards everyone he meets. He has taken to hugging and kissing every single person who comes into his room at the hospital, no matter what they are there for. The dialysis nurses are trying to hook him up to IV's and the whole time he is grabbing their arms, pulling them close to him, and giving them hugs and kisses. He grabs everyone on the medical team and lays his head down on their arms or shoulders. He is really amazing. Every nurse keeps commenting on how loving he has become. He is constantly reaching for nurses and doctors to pick him up, and then he yells if they try to put him back down. He is the one going through the trauma, but every time his little sister yells or cries, he grabs her and kisses her. This is a life that needs to be lived. Again, please keep him in your prayers. ~Kassidi
5/6/09
Prayer request for Riley
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