The latest....

Better late than never, do I get to use that? Probably not. Hasn't been many updates because really everything is stagnant at this point. Back in March our medical team here in Omaha held a conference that pretty much led to them saying they have no idea what has caused Kaleb's condition or where it may lead. They have performed every test they could possibly think of, and still nothing. At that point they lean towards observation of his condition and hope in a few years they will be able to figure out what we are dealing with.

In may we had our vascular surgeon recommend we see a urologist and nephrologist at Kansas City Children's Mercy. Hopes for answers were extremely high before this visit. All I have prayed for since last December is a diagnosis so we know where to go from here. Unfortunately, this was not the case. The urologist was a true surgeon and wanted to take out the right kidney as soon as possible. The nephrologist was the opposite, and wanted to leave the kidney in since it is functioning and we do not have a diagnosis to tell us what caused the condition.

In June, I received a phone call from a interventional radiologist at the Med Center that thought he may have a surgery that could help. His thought was to go in and try to expand the vein to restore blood flow to the infarcted portion of the right kidney trying to bring it back to fully functional. If the vein was to small, which it most likely would be, he would cut off blood flow completely to the kidney infarction. This would hopefully restore Kaleb's bp to a normal range. In theory this sounded like a very possible option. However, I would prefer that Kaleb's vascular surgeon perform the surgery because we really have grown to trust him the most out of anyone on Kaleb's medical team. We are still weighing this option. On one hand you want to try the surgery because the longer he maintains an elevated bp and stays on meds for this the more likely it is that he will always maintain a high bp for life. On the other hand, his kidney is still functional and we could cause more damage trying this and chance having to take the entire kidney out.

Last week we had Kaleb's one year follow up appointments at Children's. After countless labs, ultrasounds and an appointment with his nephrologist they determined that the condition is the same as before. However, I do not trust the ultrasound images for his condition. In the begining we did numerous ultrasounds which all showed normal kidneys and normal function. So I'm not 100% confident in the results. But the only way to actually go in and see the condition of the right kidney is repeating the MRA and MRV scans from last year, which would require sedation again.

We will also be transferring to the Kansas City nephrologist as the new full time nephrologist on our medical team. Kaleb's current nephrologist will be moving to Oklahoma shortly and this is someone we are familiar with and seemed to have views similar to ours regarding treatment. I am hoping that a set of fresh eyes on his team with provide insight into possible tests or diagnosis for his condition.

In a nut shell, that is what is going on. We continue checking his bp, following his drug regimen and searching for similar cases on the Internet that may provide insight into his condition. At this point I'm am just thankful for all of the blessings we have had through this time and continue to pray for a diagnosis at some point. This has been such an emotional roller coaster since we started this journey and I can't even begin to tell you how much I have learned. But more than anything Kaleb has shown what an amazing little boy he is and taught me strength and courage like no one else could.

Christi :)