From the begining...

I will start at the beginning for friends and family that may not know all of the details of how Kaleb's journey began. On September 4Th of this year Kaleb went for his 4 year check up. Both boys had their yearly check ups scheduled. Very routine, worst part of the visit would be a flu shot. With it being a routine checkup it seemed like no big deal to let their grandma take them.This seemingly routine check up turned into so much more when I received a phone call from the pediatrician. She told me that Kaleb's blood pressure was extremely high. They checked and rechecked and still the same. At this point the doctor suggested we schedule a Kidney Doppler and Kidney ultrasound. Typically blood pressure issues in young children stem from a kidney issue, so this would be where we start searching for the cause. Her initial thought was a kidney infarction or kidney failure.
The rush of so many emotions at this point overwhelmed me. I was in shock and disbelief. I was the one that at one point believed that God would never let my children have a major illness because I couldn't handle that. I know it sounds silly but when I would talk with mothers that have been through that they were unbelievable with the amount of strength they had to get through there child being so sick. That was not me, I want to cry when my kids get their immunizations.
At this point it was a matter of going through the motions of what you should be doing, even though it felt like I wasn't even there. That afternoon we had the ultrasound and Doppler scheduled. The appointment was 2 weeks away. I honestly did not think I could make it 2 weeks with the unknown constantly in my thoughts. Finally it was time and we took him in for the kidney scans. This was terrifying, but wonderful at the same time. We may finally have a diagnosis so we can begin to treat. Days later we found out the Doppler and ultrasound of the kidneys both came back normal. This is wonderful news, however we still don't know what is causing the high blood pressure.
The next step is an aorta scan. The Doctor believes there may be a narrowing of his aorta which could be causing the high blood pressure. This sent sheer terror through me knowing that Kaleb may need a heart surgery if this is the case. We had just adjusted to a possible kidney transplant for the last few weeks and now this. After all of the worrying, the aorta scan came back normal also. I was so thankful for these results, knowing that his sweet little heart is perfect.
Every time you get excited by the good results from the test, the next thought is always but there is still something wrong. Kaleb was also zoning out at times, which wasn't completely uncommon for him. We had always assumed he was tired because it would only be for a couple of seconds. My Mom thought that it may be a form of seizures though. So I discussed this with the doctor and decided to do an EEG to test for seizures. I was shocked when the results came back positive for absence seizures. Now we would be meeting with a neurologist to discuss treatment. He put Kaleb on seizures meds which seem to control them well. He was also very quick to point out that Kaleb's seizures had nothing to do with the high blood pressure.
The next step was to bring in a nephrologist to see where we go from here. It took over a week to even convince the nephrologist that Kaleb truly had high blood pressure because she didn't believe it could be right. Only after her nurse took it in her office did she believe it was real. She was finally going to put him on blood pressure meds. This was a relief because organ damage was a possibility with how high his blood pressure was at that time. She suggested that we schedule a MRA and MRV of the Kidneys for another look. At this point I had began to feel a sense of peace and comfort come over me. I was still terrified that we could not figure out what was wrong, but yet I was very calm for the situation. I can tell you now that is when I knew God was carrying me through this.
The hardest thing to deal with through all of this was when Kaleb told me that God was going to take him to heaven. He said "God is going to take me to heaven soon because I'm sick." I love that he knows he will be with God in heaven when he dies, but it ripped my heart out to know that he is worrying about that.
Through this past month and half I have never prayed so much in my life. At this point I didn't even know what to ask God for. You never want anything to be wrong with your child, but we needed to find out what was wrong so we could go from there. I ended up putting my full faith in God. I prayed that he let his will be done. I came to a place where I trusted in God's plan for Kaleb, whatever that might be.
Kaleb would have to be put under general anesthesia for the MRA and MRV scans to keep him still in the tube for over an hour. I was by his side until they put him to sleep. To see how scared he was because he didn't understand what was going on crushed me. He is so sweet and innocent, to watch him go through this has been heart breaking and inspirational at the same time. He did great though, and enjoyed all of the slushies the nurses gave him in recovery afterwards. The wagon ride to the car was also one of his favorites!!!
The following week, after not hearing results in the time frame we should have, I started calling around to the different doctors offices involved. The Pediatrician called me at work and told me that she had the results. The MRA showed that Kaleb had 3 extra renal arteries, 2 on the right and 3 on the left. She said this is likely the cause of the high blood pressure. The following day I spoke with the nephrologist who disagreed.
A vascular surgeon was then brought in to review the scans for his opinion on the arteries. I received a call that an appointment had been made for Kaleb with the vascular surgeon, but was never told why. We knew something was wrong, this surgeon is booked out for 7 months, he didn't squeeze him in to let us know everything looked great. Finally we get to meet with him and stop wondering. He informed us that he saw narrowing in one of the renal arteries. This would explain the high blood pressure. He asked if we would like to do a CT Angiogram before the vascular surgery just for another look at what we are dealing with. We agreed that any films or answers we can get before the surgery would be best.

The day of the CT Angiogram I had a bad feeling. I couldn't explain why, but I knew something wasn't right. Kaleb was suppose to be put to sleep again for this scan for him to hold still. I'm so thankful that in the end we were able to keep him awake for the scan and we were able to be in there with him. He is such a brave little boy!!! An hour afterwards I began calling around for results knowing that the radiologist had read the films already. After trying 3 or4 people for results with all of them quickly deferring to the vascular surgeon I knew something was very wrong.
After waiting 5 days having a gut feeling that something is wrong it was finally the day for answers. The vascular surgeon came in and didn't say anything, just began pulling up Kaleb's films on the computer. He began showing us the scans through the body. When he came to the kidneys he asked us to point out differences. It was not the artery causing the high blood pressure, it is the right kidney. The contrast from the CT shows that at least 50% of his right kidney is not functioning and has no flow through it. He then said that he would need a partial or whole nephrectomy. Apparently this is a very rare condition, to find any information on the internet about it we have to go to a medical journal archive site that the surgeon showed us.
This sweet angel sitting on my lap was going to have to go through all of this. He has such a big heart and gentle soul, it just doesn't seem fair. He has been through so much already in the last 2 months. Every time we drive past Children's Hospital he tells me to stop dragging him there, he's sick of it. And when I pick him up early from preschool for any of the countless appointments he has had he always asks "What are they going to do to me today? Any pokes?"

At this point we still lack any further information on the surgery or his condition. We are waiting to meet with the only pediatric urologist in Nebraska who will perform the surgery and will hopefully have all of the answers to our questions. They have tentatively scheduled his surgery for January 4Th.

In the mean time his case has been sent for review at the Kansas City Children's Hospital, Denver Children's Hospital and the Rochester Mayo Clinic. This will give us a few other opinions on the diagnosis and surgery to assure us this is what he needs.

I can't tell you how much I appreciate everyone's thoughts, prayers and love that we have been blessed with. At this point it is one day at a time. Being thankful for all of the blessings I have in my life that I may sometimes take for granted.

I will try to update often to let everyone know how he is doing and what will be happening next.

Christi :)