Sitting, waiting, wishing,praying.........

I am TERRIBLE at this, so sorry :( It has been a very long few months. After a angiogram and adding a hematologist to the list of Dr's and Specialists currently working with Kaleb we are still left with even more questions than answers.

The vascular surgeon was able to see the infarction when they performed the angiogram. There was hope that we could try a partial nephrectomy, but it would have been a very rare and risky surgery. We decided it would not be best as well as the surgeon that would perform the nephrectomy.

Next stop was the Hematologist. There was a boy in Spain with the same symptoms as Kaleb that was diagnosed with Factor 7. The hematologist tested for this along with almost 35 other DNA and clotting antigens. He tested normal for everything except for one DNA mutation. This specific mutation does not regulate the homosystine levels in his body. Over time these levels will become to high and cause a clot. We thought this was the answer. This would explain the infarction in the kidney due to a blood clot, so I thought. Unfortunately, I was told that this is not the case at all. So we have one more problem, but no answers.

The Dr's called a case conference with us in February to review all of the tests that have been done and discuss where we go from here. We were informed that at this point they are really out of ideas and tests to run. They said they hope to find a similar case on the Internet within the next 5 years or so. We were also told that he would qualify for a case on the show Mystery Diagnosis if they are ever able to come up with one.

The final decision on whether or not to remove the kidney is going to come from a Nuclear Scan done a few weeks ago. If the right kidney has at least 10% of function left we will leave it in and watch the growth and infarcton closely. If not, they will proceed with scheduling the surgery to remove it. The fear the Dr's have of removing the kidney is that the unknown cause may then attack his left kidney. The results of the nuclear scan were suppose to be available within hours of the scan, it has been a few weeks and still nothing. I have been told the Dr's are discussing, still, and will talk to us as soon as they have answers.

It has been very hard getting our hopes up for answers, only to end up with more questions. But through all of this I remain optimistic that we will be able to figure out exactly the cause, sooner or later. In the mean time I feel blessed that Kaleb is living a normal life throughout this. He is able to be a kid and does not have any restrictions on his activities. I will admit every time he falls I silently hope he didn't injure his good kidney. He has been a inspiration to me through these last 7 months. After all of the needles, IV's, procedures and even being taped to a stretcher for over 6 hours he still finds the good in every situation. When I pick him up for a appointment that involves needles he says, "At least I don't have to be taped to the bed today."

I'm sorry I am so terrible on updating this blog, however I have good intentions on doing it more frequently :) Thanks for checking in with us.

Christi