Brody started feeling nauseated and threw-up a couple times Sunday morning. He also just seemed more tired than usual. This was concerning to us and we were especially worried after seeing Brody's creatinine levels continuing to increase a little bit each time we had labs done recently. The nausea, vomiting, and tiredness can all be signs of kidney failure. Also, dehydration can certainly worsen kidney function.
We decided to contact the doctor on call from Toledo Children's Heme/Onc early Sunday afternoon to see if we could bring Brody in for a lab check and some fluids due to our kidney concerns. She had us bring him in for this. Unfortunately, the labs showed his creatinine had jumped tremendously. He had been at 1.31 on June 12th and jumped all the way to 3.42 on Sunday, June 15th. This is a huge increase in such a short amount of time. She contacted Dr. Cripe in Columbus since he is now managing Brody's care rather than Toledo Children's. Brody's other labs were relatively stable so it was decided for him to finish a bag of fluids in Toledo and then for us to travel to Columbus.
We arrived in Columbus late Sunday night and then we were seen first thing Monday morning in Columbus. Brody was sent for an ultrasound and more labs were ordered. The Monday morning labs (June 16th) showed the creatinine going up a little more to 3.43 but many other labs were now not so stable. The ultrasound showed hydronephrosis (fluid in kidney) but it looked to be about the same amount of hydronephrosis as his last ultrasound. So at first, the kidney function decline was not suspected to be from the hyrdonephrosis. Dr. Cripe consulted with a nephrologist and turned over management of Brody at this point to the nephrologist. Of course, being a Monday, we had to wait and wait and wait all day Monday before Brody finally got to see the nephrologist. He was not able to eat or drink anything all day in case the nephrologist decided to do any surgical procedures (kidney biopsy, stent replacement etc). So Brody was hungry and thirsty all day (so were his brothers and myself since none of us wanted to eat or drink in front of him nor leave him to go do such a thing). Brody did not eat Monday morning either since we were expecting that surgery may be a possibility. Around 5pm yesterday (Monday), we finally got to see the nephrologist. Brody was relieved that he said he would not do any surgical procedures that day yet and so Brody was allowed to eat and drink. That made his day! The nephrologist let us know that he reviewed Brody's past MRIs and that the MRI of the kidney shows increased hydronephrosis rather than stable hydronephrosis. He suspected that the internal stent may not be working efficiently enough anymore. He placed Brody on IV fluids best suited to his kidney function to prevent dehydration. He put Brody on a low potassium and low phosphorus diet. He was also started on Phoslo with meals to bind phosphorus in the foods he eats. Brody's blood was acidotic and sodium bicarb was started also to reverse this.
Brody was happy to finally get to eat and drink last night despite his diet restrictions. His nausea and vomiting have not been a problem since Sunday morning. Zofran has been keeping that at bay. We decided to contact the doctor on call from Toledo Children's Heme/Onc early Sunday afternoon to see if we could bring Brody in for a lab check and some fluids due to our kidney concerns. She had us bring him in for this. Unfortunately, the labs showed his creatinine had jumped tremendously. He had been at 1.31 on June 12th and jumped all the way to 3.42 on Sunday, June 15th. This is a huge increase in such a short amount of time. She contacted Dr. Cripe in Columbus since he is now managing Brody's care rather than Toledo Children's. Brody's other labs were relatively stable so it was decided for him to finish a bag of fluids in Toledo and then for us to travel to Columbus.
We arrived in Columbus late Sunday night and then we were seen first thing Monday morning in Columbus. Brody was sent for an ultrasound and more labs were ordered. The Monday morning labs (June 16th) showed the creatinine going up a little more to 3.43 but many other labs were now not so stable. The ultrasound showed hydronephrosis (fluid in kidney) but it looked to be about the same amount of hydronephrosis as his last ultrasound. So at first, the kidney function decline was not suspected to be from the hyrdonephrosis. Dr. Cripe consulted with a nephrologist and turned over management of Brody at this point to the nephrologist. Of course, being a Monday, we had to wait and wait and wait all day Monday before Brody finally got to see the nephrologist. He was not able to eat or drink anything all day in case the nephrologist decided to do any surgical procedures (kidney biopsy, stent replacement etc). So Brody was hungry and thirsty all day (so were his brothers and myself since none of us wanted to eat or drink in front of him nor leave him to go do such a thing). Brody did not eat Monday morning either since we were expecting that surgery may be a possibility. Around 5pm yesterday (Monday), we finally got to see the nephrologist. Brody was relieved that he said he would not do any surgical procedures that day yet and so Brody was allowed to eat and drink. That made his day! The nephrologist let us know that he reviewed Brody's past MRIs and that the MRI of the kidney shows increased hydronephrosis rather than stable hydronephrosis. He suspected that the internal stent may not be working efficiently enough anymore. He placed Brody on IV fluids best suited to his kidney function to prevent dehydration. He put Brody on a low potassium and low phosphorus diet. He was also started on Phoslo with meals to bind phosphorus in the foods he eats. Brody's blood was acidotic and sodium bicarb was started also to reverse this.
Brody will soon be having surgery to place an external nephrostomy tube. We do not yet know the time of the surgery, only that it will be today. He will be squeezed into the schedule at some point today. Brody has been very sleepy today. He has been sleeping all morning (He slept most of yesterday too). He hasn't been awake long enough for us to tell him about the surgery yet. We don't want to wake him and have him feel hungry etc while waiting for the surgery either. So we are choosing to let him sleep in peace for now.
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