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 :)
Monday, January 3, 2011
Wednesday, March 17, 2010
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
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
Wednesday, December 16, 2009
After the appointment today we have even more questions than answers. This will be a short update and I will fill in the rest a little later. The surgery is still tentatively scheduled for January 4Th, however the surgeon in Omaha can only perform a full nephrectomy. A partial nephrectomy for the areas of his infarction would be to complex for the surgeon here. Nothing is for certain until we have all of the scans reread and diagnosis' reconfirmed.
Upon reviewing the ct angiogram the surgeon has reason to believe that there is a possibility that both kidneys are affected. If that is the case we would have to look at transplant and donor options. I just pray that this is not true and we only have to worry about the right kidney infarction. At this point we are waiting for other radiologist to review the scans and also will have a cardiologist review. I have also been told to start looking for studies published in medical journals with his condition, then we will have to contact these surgeons to see if a partial nephrectomy would be an option if they were to perform the surgery.
So at this point we wait again, hopefully we will know more in a week or so. I will update with more details in a day or two. Thank your for all your thoughts and prayers, we need them now more than ever.
Upon reviewing the ct angiogram the surgeon has reason to believe that there is a possibility that both kidneys are affected. If that is the case we would have to look at transplant and donor options. I just pray that this is not true and we only have to worry about the right kidney infarction. At this point we are waiting for other radiologist to review the scans and also will have a cardiologist review. I have also been told to start looking for studies published in medical journals with his condition, then we will have to contact these surgeons to see if a partial nephrectomy would be an option if they were to perform the surgery.
So at this point we wait again, hopefully we will know more in a week or so. I will update with more details in a day or two. Thank your for all your thoughts and prayers, we need them now more than ever.
Monday, December 14, 2009
Ok, my accomplishment for the day - I not only updated the blog, but I also figured out how to add music!!! This doesn't sound like a big deal, but I have been trying to add the music player since I started the blog. Funny how easy it is if you just read the "help" section in blogger, who would have guessed, LOL :)
Wednesday, December 2, 2009
Thankful.....
Let me just start by saying I'm sorry for not updating more. I have resolved to be better about this, everything has just been a little crazy.
We have learned a little bit more regarding his condition. It has been caused by a renal artery embolism. The embolism basically cut off blood flow to the kidney. This caused a infarction of the kidney. In simpler terms, caused the kidney to begin to die due to lack of blood flow. The radiologists involved believe that the infarction presented itself within 2-3 weeks, which is why only the blockage showed up on the MRA. Unfortunately, it was misdiagnosed as narrowing of the artery rather than an embolism blocking the artery.
We will finally be meeting with the Pediatric Urologist who is going to be performing the surgery this wednesday. We have been unable to get any answers from anyone since the diagnosis, so this is a much anticipated appointment. All attempts for second opinions have failed so far so we may have to trust the diagnosis and move forward with the surgery which is tenatively scheduled for January 4Th right now.
Kaleb has been doing really well given the circumstances. He has been really tired though, most likely due to his blood pressure dropping to somewhat normal. And he seems to be catching every cold that is going around. He is not looking forward to the appointment on Wednesday. He is sick of going to all of the appointments and being poked and prodded with all of the needles and IVs. Can't say I blame him, he has been such a brave little boy through all of this.
I am just thankful that the embolism was not in his brain, heart or lungs. I'm just looking forward to the time when he is a healthy happy child again. He deserves to have the innocence of his childhood back. That is something that has been somewhat taken from him at this point. At 4 years old he shouldn't have to be worried about needles everytime he is picked up early from preschool.
I just pray this will go as easily and quickly as it can for him so he can get back to being a little boy. It still doesn't seem real, it sets in a little more each day though. I'm pretty sure it will set in after the appointment with the surgeon. Thank you for all of your thoughts, prayers and support, we need all we can get and really appreciate it!!!
Christi :)
We have learned a little bit more regarding his condition. It has been caused by a renal artery embolism. The embolism basically cut off blood flow to the kidney. This caused a infarction of the kidney. In simpler terms, caused the kidney to begin to die due to lack of blood flow. The radiologists involved believe that the infarction presented itself within 2-3 weeks, which is why only the blockage showed up on the MRA. Unfortunately, it was misdiagnosed as narrowing of the artery rather than an embolism blocking the artery.
We will finally be meeting with the Pediatric Urologist who is going to be performing the surgery this wednesday. We have been unable to get any answers from anyone since the diagnosis, so this is a much anticipated appointment. All attempts for second opinions have failed so far so we may have to trust the diagnosis and move forward with the surgery which is tenatively scheduled for January 4Th right now.
Kaleb has been doing really well given the circumstances. He has been really tired though, most likely due to his blood pressure dropping to somewhat normal. And he seems to be catching every cold that is going around. He is not looking forward to the appointment on Wednesday. He is sick of going to all of the appointments and being poked and prodded with all of the needles and IVs. Can't say I blame him, he has been such a brave little boy through all of this.
I am just thankful that the embolism was not in his brain, heart or lungs. I'm just looking forward to the time when he is a healthy happy child again. He deserves to have the innocence of his childhood back. That is something that has been somewhat taken from him at this point. At 4 years old he shouldn't have to be worried about needles everytime he is picked up early from preschool.
I just pray this will go as easily and quickly as it can for him so he can get back to being a little boy. It still doesn't seem real, it sets in a little more each day though. I'm pretty sure it will set in after the appointment with the surgeon. Thank you for all of your thoughts, prayers and support, we need all we can get and really appreciate it!!!
Christi :)
Thursday, November 19, 2009
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 :)
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 :)
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