Last week I had documented the day Sunchit was diagnosed with Nephronophthisis in the third week of May, however, the journey had started about 6 weeks earlier.
Feb 23rd 2021 – I was checking Savita’s blood pressure with a friends BP machine which was showing some wide readings. Since Sunchit was sitting next to her, I thought of checking his BP to calibrate and see if the machine will work. His BP came out to be very high, several times in a row. I noted that, told Savita and she said she is going to see his pediatrician in a couple of weeks and will remember to tell him. Savita’s BP eventually got better by itself.
March 15th: Savita took the boys to their regular Pediatric doctor and mentioned about Sunchit’s BP, in the checkup, his BP turned out to be fairly high. Thus started our journey, the pediatric doctor recommended we do a blood test for Sunchit.
March 25th: The following week Savita got his blood test done, as soon as the doctor got the report, he called up Savita and started asking very probing questions regarding Sunchit, if he was tired, was he nauseated etc. When she asked why all these questions, he said one of his markers “Blood Urea Nitrogen” (BUN) was very high and this generally indicated a kidney problem, he asked us to see a pediatric nephrologist right away. He eventually helped Savita in getting an appointment quickly as he was quite concerned. We got an appointment with the Nephrologist in the second week of April.
April 2nd: The day started off normal, earlier that week I had just started my new job with o9 solutions and was looking forward to start my bootcamp the next week. Savita got a call that morning from the Nephrologist we were to see the following week. She had received the results from Pediatrician and she wanted us to go and get some more tests done on Friday itself, not the next day or next week, that day itself. We took Sunchit at lunch time to get those additional tests done and came back home. Due to some clerical mistake his blood was drawn twice but then we got home in about an hour. After finishing his day, Savita took Sunchit to play cricket with his friends, a regular thing since fall last year. While he was playing Savita got a call from the Nephrologists office, they asked us to take him right away to ER. They said he needs a check up right away, we were confused and scared at this time, nothing was wrong with Sunchit he looked and felt normal. Regardless, after he took his shower, we told him we were going to ER. He was not happy, but reluctantly agreed to go with us. After checking in, they put him on continuous monitoring, his blood pressure was high, blood tests, sonograms were done. They gave him a med for his BP which got under control within half an hour, but his potassium level was very low. So they asked us to get into the hospital. Right about 3 AM we entered the downtown hospital and got admitted and slept for 3 hours before waking up the next day.
April 3rd: We met the on-call Nephrologist Dr. S for the first time, he came in and told us there were a lot of confusing things, but he would let us go home if his Potassium gets back into normal range with supplements. They kept doing blood tests and monitoring his BP, which was now normal. We went home the next day, but Dr. S asked us to do his tests every two weeks.
May 18th: We had been doing his blood tests every two weeks and his creatinine was going up, eventually, they switch to weekly. This was the day when Sunchit was very tired, he was finishing school, his summer vacation was to start the following week. Savita called Dr. S and told him that he is not feeling great, he said get into the hospital so he can be monitored and investigated correctly. We got into the hospital that evening and they started his monitoring, he seemed to be doing fine and was in good spirits. His MRI which was scheduled for the following week was pulled into the next day. That would be the first day we would hear about Nephronophthisis.
Hope For Sunchee 