Since we have been back in the states and getting settled, I have found a new set of doctors to follow Trystian's Kidney disease. We had thought we were in the clear and good until he hit puberty, however we were very wrong...
Trystian was born with hydronephrosis (water on the kidney). Once he was born, we were sent to a hospital to be admitted and he underwent tests at 5 weeks of age to find he had hydronephrosis due to high grade reflux on both sides. His reflux was 4 on the left and 5 on the right. This damaged his kidneys resulting in his having stage II end renal kidney failure. He had surgery when he was 1 to hopefully fix this. This surgery was quick, and no cutting. It's called deflux. They simply run a line up the urethra while under anesthesia and fix the ureters by inserting a material that will help manage and downgrade the reflux. The surgery was a success as his reflux went down to a 1 and 2 on each side. A year after the surgery was completed the urologist released us from his care and said he was no longer needed unless a urinary infection happened. A year after that the nephrologist released Trystian from his care and said that all looked great and that Trystian probably wouldnt require anything until he hit puberty. We were told that the pediatrician was able to monitor the kidney disease by blood tests.
Years later, after moving here to the shore, we found a pediatrician for the boys and the first thing he said he wanted for Trystian was an ultrasound just to baseline his care here. Well, it started with that routine ultrasound. The pediatrician referred us to the local urologist, however the closest pediatric nephrologist is across the bridge. The urologist ordered an ultrasound, and we got that done locally. As the tech was scanning Trystian I could see that one of kidneys was not like it should... The results came back the day before heading cross the bridge to see the nephrologist. It showed that his right kidney was very dilated. As we saw this nephrologist for the first time he said that he couldnt say for certain what the results were for the ultrasound except that we should consult with the urologist more in depth. He said that the blood results looked okay although some of the levels were rising. We spoke to the Urologist later that week and were told that we should see and consult a pediatric urologist further across the bridge. We went to Johns Hopkins to see a urologist who then said she would like to run a bunch of tests and once we had those scheduled, we took the trip back across the bridge and got them done.
A repeat ultrasound showed the same results as the first. The results of the VCUG showed that Trystian no longer had reflux... (although this is good, it brings more questions because there has to be a reason why the right kidney is so dialated with a back up of urine). The MAG-3 scan showed that he had a decrease in kidney function. He had a 48% function on his right kidney at 5 weeks of age, and now he had only a 31% function. The fact that it was decreased and after careful reviews of the ultrasound and VCUG, the urology team at Hopkins determined that Trystian had an obstruction at the opening of the ureter to his right kidney. The obstruction was why his kidney was not draining properly and the team of doctors thought it would be best to operate.
While I waited to hear about the operating date, the urology team continued to review Trystian's case and thought that the surgery should be done sooner rather than later and they bumped up the date! I got the date set and we were off to Hopkins so that Trystian could have surgery...
My mom came up with me to keep me company. I thank her for that, I'm not sure what I would have done all that time!
The surgery was only suppose to take about an hour and a half and only a 1 night stay at the hospital... Well as the morning of surgery started, we didnt didn't know what was in store!
Trystian was very anxious and recieved some sedative before even going into surgery... He was very nervous about everything, and I dont blame him! Once surgery started, my mom and I went down to grab a cup of coffee. I got a phone call from the surgery unit that we needed to come up to have a small conference. We weren't sure what was going on until the doctor came in the room to talk to us. The doctore explained that once they got the machine set up (The surgery was being done with a robotic laproscopic machine) that they found a second much more serious obstruction. This one would have to be fixed first. He said that the ureter itself was like a sausage with an obstruction on either end. He said that he wanted us to know about the change in surgery plans and went in to scrub up.
We waited, and waited, and waited! We got very anxious ourselves as 4 hours passed, then 5, then 6, and 7... At 8 hours, we were finally told that the surgery was complete and that Trystian should be waking up soon. The doctor explained all the complications... The ureter connection to the bladder was like cement! The ureter was also stretched out the width of someones wrist and what they consider a "mega ureter" The doctor had to detatch it from the bladder, reconstruct it, then re-insert it into the bladder and seal it and the bladder back up. He also had to fix the vasa deferentia as it was also cemented and non-working (this is the tube where the sperm were to travel from the testicles). He put a stent in place in the ureter to help with the healing. The stent will have to be in place for a month and then Trystian will have to have another procedure to have it removed.
When Trystian woke up from surgery, he had a foley catheter in place as well as a drain coming from one of the incisions. He had a port in one hand and an IV in the other. Trystian was very weary of all this and I dont think he really smiled much the first couple of days. Because of the extensive surgery, we ended up staying 4 nights in the hospital. We had only planned on 1 and brought only what we needed for that 1 day... Trystian was scared to get out of bed and try to walk, and he was in a lot of pain!! After coaxing him, we got him to stand and walk to the doorway of his room to sit on a wheelchair the night of the second day. We went down to the play room, and he really didnt want to do much, we kept the visit brief and got back to the room to make him comfortable. The next day we got him to walk to the wheelchair and we made 2 trips to the play room. The following day he got a surprise... his brother and daddy, and poppa came up to visit!! This was the turning point of his healing!! He was a much different person with this! He walked to the playroom without a wheelchair! He laughed, he smiled! Granted, he hadnt been able to hold down any solid food prior to this so the doctor had taken away all solid and liquid foods and said to just have him fast until he "farted", this didnt stop him from having fun with his family!
The next morning after everyone had visited, he woke up exited to tell me "mom, I farted" and so the doctor let him have some water, and juice. Once we got him to hold that down, he was given jello. Eventually at the end of the day, he was allowed to eat some real food! YAY! Now he was walking alright and eating and holding it down, the doctor was finally comfortable with releasing Trystian from the hospital. With poor Trystian being under anesthesia so long and the extensive surgery he underwent and all the complications we had had a rough time getting back to his old self!
He was released with a catheter and I was taught how to remove it when it was time. He was happy to be able to go home to see his daddy and brothers! I was happy to go home to sleep in a real bed!! I was however weary about the trip home... we would have a 3 hour drive and since Trystian had a catheter, and a carseat, I wasnt sure how this was going to work. We got it to work though... We planned the departure of the hospital with a dose of pain medication, and I made the straps lose and we put a pillow between the straps and his crotch so that it wasnt hurting him.
Now that we are home, he is doing great. Pain management is good, and he is trying to walk and play with his brothers, although I have to remind everyone that he can't be doing a lot yet since he has the catheter still. We attemted to climb the stairs, but it is too painful, so he has just been sleeping downstairs on the recliner for now.
I'm so glad that Trystian is doing well! I know he will have a procedure next month to have the stent removed, and depending on if the second obstruction fixes itself he may need another surgery in the future for that. I'm really hoping that he will not need any repeat surgeries and that his kidney will not lose any more function.
Trystian's case was extremely rare... The doctor said that he had never seen any case like this before. In fact Trystian's case will most likely end up in a medical encyclopedia soon! WOW
You can follow him on his Facebook page: www.facebook.com/SirTrystian
Trystian was born with hydronephrosis (water on the kidney). Once he was born, we were sent to a hospital to be admitted and he underwent tests at 5 weeks of age to find he had hydronephrosis due to high grade reflux on both sides. His reflux was 4 on the left and 5 on the right. This damaged his kidneys resulting in his having stage II end renal kidney failure. He had surgery when he was 1 to hopefully fix this. This surgery was quick, and no cutting. It's called deflux. They simply run a line up the urethra while under anesthesia and fix the ureters by inserting a material that will help manage and downgrade the reflux. The surgery was a success as his reflux went down to a 1 and 2 on each side. A year after the surgery was completed the urologist released us from his care and said he was no longer needed unless a urinary infection happened. A year after that the nephrologist released Trystian from his care and said that all looked great and that Trystian probably wouldnt require anything until he hit puberty. We were told that the pediatrician was able to monitor the kidney disease by blood tests.
Years later, after moving here to the shore, we found a pediatrician for the boys and the first thing he said he wanted for Trystian was an ultrasound just to baseline his care here. Well, it started with that routine ultrasound. The pediatrician referred us to the local urologist, however the closest pediatric nephrologist is across the bridge. The urologist ordered an ultrasound, and we got that done locally. As the tech was scanning Trystian I could see that one of kidneys was not like it should... The results came back the day before heading cross the bridge to see the nephrologist. It showed that his right kidney was very dilated. As we saw this nephrologist for the first time he said that he couldnt say for certain what the results were for the ultrasound except that we should consult with the urologist more in depth. He said that the blood results looked okay although some of the levels were rising. We spoke to the Urologist later that week and were told that we should see and consult a pediatric urologist further across the bridge. We went to Johns Hopkins to see a urologist who then said she would like to run a bunch of tests and once we had those scheduled, we took the trip back across the bridge and got them done.
A repeat ultrasound showed the same results as the first. The results of the VCUG showed that Trystian no longer had reflux... (although this is good, it brings more questions because there has to be a reason why the right kidney is so dialated with a back up of urine). The MAG-3 scan showed that he had a decrease in kidney function. He had a 48% function on his right kidney at 5 weeks of age, and now he had only a 31% function. The fact that it was decreased and after careful reviews of the ultrasound and VCUG, the urology team at Hopkins determined that Trystian had an obstruction at the opening of the ureter to his right kidney. The obstruction was why his kidney was not draining properly and the team of doctors thought it would be best to operate.
While I waited to hear about the operating date, the urology team continued to review Trystian's case and thought that the surgery should be done sooner rather than later and they bumped up the date! I got the date set and we were off to Hopkins so that Trystian could have surgery...
My mom came up with me to keep me company. I thank her for that, I'm not sure what I would have done all that time!
The surgery was only suppose to take about an hour and a half and only a 1 night stay at the hospital... Well as the morning of surgery started, we didnt didn't know what was in store!
Trystian was very anxious and recieved some sedative before even going into surgery... He was very nervous about everything, and I dont blame him! Once surgery started, my mom and I went down to grab a cup of coffee. I got a phone call from the surgery unit that we needed to come up to have a small conference. We weren't sure what was going on until the doctor came in the room to talk to us. The doctore explained that once they got the machine set up (The surgery was being done with a robotic laproscopic machine) that they found a second much more serious obstruction. This one would have to be fixed first. He said that the ureter itself was like a sausage with an obstruction on either end. He said that he wanted us to know about the change in surgery plans and went in to scrub up.
We waited, and waited, and waited! We got very anxious ourselves as 4 hours passed, then 5, then 6, and 7... At 8 hours, we were finally told that the surgery was complete and that Trystian should be waking up soon. The doctor explained all the complications... The ureter connection to the bladder was like cement! The ureter was also stretched out the width of someones wrist and what they consider a "mega ureter" The doctor had to detatch it from the bladder, reconstruct it, then re-insert it into the bladder and seal it and the bladder back up. He also had to fix the vasa deferentia as it was also cemented and non-working (this is the tube where the sperm were to travel from the testicles). He put a stent in place in the ureter to help with the healing. The stent will have to be in place for a month and then Trystian will have to have another procedure to have it removed.
The next morning after everyone had visited, he woke up exited to tell me "mom, I farted" and so the doctor let him have some water, and juice. Once we got him to hold that down, he was given jello. Eventually at the end of the day, he was allowed to eat some real food! YAY! Now he was walking alright and eating and holding it down, the doctor was finally comfortable with releasing Trystian from the hospital. With poor Trystian being under anesthesia so long and the extensive surgery he underwent and all the complications we had had a rough time getting back to his old self!
Now that we are home, he is doing great. Pain management is good, and he is trying to walk and play with his brothers, although I have to remind everyone that he can't be doing a lot yet since he has the catheter still. We attemted to climb the stairs, but it is too painful, so he has just been sleeping downstairs on the recliner for now.
I'm so glad that Trystian is doing well! I know he will have a procedure next month to have the stent removed, and depending on if the second obstruction fixes itself he may need another surgery in the future for that. I'm really hoping that he will not need any repeat surgeries and that his kidney will not lose any more function.
Trystian's case was extremely rare... The doctor said that he had never seen any case like this before. In fact Trystian's case will most likely end up in a medical encyclopedia soon! WOW
You can follow him on his Facebook page: www.facebook.com/SirTrystian
