Just to catch everyone up on Brooklyn. At the end of October Brooklyn had a high fever for a few days with NO accompanied symptoms, which is a major red flag with her hydronephrosis condition. I took her to our local hospital in Saudi and began the necessary tests to check on her kidneys with urine samples and to get a look at the size of dilation from her kidney since her last check up in July. Her urine samples came back fine telling us there was no infection and that her kidneys were functioning appropriately. However, the ultrasound showed that the area on the right kidney that has the dilation jumped 7mm in size making the total dilation 27mm (it was 7mm at birth, 12mm at 2 month, then 17mm, 21mm--- you get the picture). This was a major heartbreak for us, since we were told her condition has the ability to fix itself by the time she turns one! We've been hopeful and have been praying for it to go away, but also trying to accept that the action plan for her is to just monitor her UNTIL they notice her hydronephrosis is affecting her kidneys.
Fast forward to this week. Brooklyn and I spent the afternoon at Texas Children's Hospital Tuesday having her check up for her hydronephrosis. First, we started with an ultrasound that took approximately 40 minutes!!! I was so grateful for the thoroughness and the complete amount of attention and care that went into that diagnostic imagery. Don't get me wrong, Saudi ultrasound techs have been great, but this was something else!!! The technician was precise and careful and conscience of every area surrounding her right kidney. She even waited until Brooklyn urinated to be able to watch the "jets" and to locate an area where her blockage could be. She couldn't find it, but did notice that the rate of secretion out of her right kidney was slow validating to us that there is still a blockage in there. The dilation also increased 3mm in size since October. Brooklyn was a complete wiggle worm through the entire ultrasound, which made for an entertaining time, but overall she did really great.
We met with our urologist a little while later and spent about 30 minutes discussing the results of her ultrasound, the past 6 months of medical stuff, and then planning our next step of action. She said that the blockage is still there, the dilation is still occurring, the hydronephrosis is still considered moderate (not mild anymore due to the size of dilation) but not severe because the lining of her kidneys is very strong and there is no signs of deterioration. We're very grateful for this news, but at the same time so discouraged to know that as the urologist said, "our daughter has this condition, but we are to wait it out until we see signs of damage or that her kidneys are being affected.". The plan is to continue to have her monitored every 6 months at TCH and to keep up with urine tests as needed.
It's really tough to just sit and wait. All these thoughts go through my mind of what if things progress quickly at some point? What if we're too late once some damage has been done? Even if we just monitor, how do we know damage isn't occurring? What could be the long term affects of this for her? When I asked the urologist how long we could keep doing this she said it could go on for years! With this condition you just wait for something to happen. So, we will continue to pray for healing in her body and just believe that we're doing everything we can and are suppose to be doing. Brooks and I will take Brooklyn to her urologist in Saudi in 3 months to keep up with the dilation in her kidneys and then will meet again with our TCH urologist in May for another ultrasound. We are also planning at that time to conduct another MAG3 test (this is the test that revealed she has a blockage in her kidneys) to compare the results and see if there is any change in the rate of secretion from her kidneys, if the location of the blockage could have changed, if there is added pressure somewhere due to the increase in dilation, and so forth. I'm already looking forward to that appointment and am anxious to see the difference of her condition in the past year.
Fast forward to this week. Brooklyn and I spent the afternoon at Texas Children's Hospital Tuesday having her check up for her hydronephrosis. First, we started with an ultrasound that took approximately 40 minutes!!! I was so grateful for the thoroughness and the complete amount of attention and care that went into that diagnostic imagery. Don't get me wrong, Saudi ultrasound techs have been great, but this was something else!!! The technician was precise and careful and conscience of every area surrounding her right kidney. She even waited until Brooklyn urinated to be able to watch the "jets" and to locate an area where her blockage could be. She couldn't find it, but did notice that the rate of secretion out of her right kidney was slow validating to us that there is still a blockage in there. The dilation also increased 3mm in size since October. Brooklyn was a complete wiggle worm through the entire ultrasound, which made for an entertaining time, but overall she did really great.
We met with our urologist a little while later and spent about 30 minutes discussing the results of her ultrasound, the past 6 months of medical stuff, and then planning our next step of action. She said that the blockage is still there, the dilation is still occurring, the hydronephrosis is still considered moderate (not mild anymore due to the size of dilation) but not severe because the lining of her kidneys is very strong and there is no signs of deterioration. We're very grateful for this news, but at the same time so discouraged to know that as the urologist said, "our daughter has this condition, but we are to wait it out until we see signs of damage or that her kidneys are being affected.". The plan is to continue to have her monitored every 6 months at TCH and to keep up with urine tests as needed.
It's really tough to just sit and wait. All these thoughts go through my mind of what if things progress quickly at some point? What if we're too late once some damage has been done? Even if we just monitor, how do we know damage isn't occurring? What could be the long term affects of this for her? When I asked the urologist how long we could keep doing this she said it could go on for years! With this condition you just wait for something to happen. So, we will continue to pray for healing in her body and just believe that we're doing everything we can and are suppose to be doing. Brooks and I will take Brooklyn to her urologist in Saudi in 3 months to keep up with the dilation in her kidneys and then will meet again with our TCH urologist in May for another ultrasound. We are also planning at that time to conduct another MAG3 test (this is the test that revealed she has a blockage in her kidneys) to compare the results and see if there is any change in the rate of secretion from her kidneys, if the location of the blockage could have changed, if there is added pressure somewhere due to the increase in dilation, and so forth. I'm already looking forward to that appointment and am anxious to see the difference of her condition in the past year.
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