Last Tuesday morning (May 14) Benjamin woke up with swollen ankles and feet and a swollen face. He had still been battling symptoms of his virus from the week before including a never ending headache but this was not good. I had Bill take Ben to our local ER while I got Jacob to school. I met Bill at the ER with Ben. Within 10 minutes of me being there, they said that they were going to transfer him to Nationwide Children's Hospital in Columbus because he had extremely high blood pressure, blood and protein in his urine and they thought they was something going on with his kidneys.
We drove him to Children's ( an hour away) and within 10 minutes of being the ER, they took him for a CT scan since his blood pressure was so high. Thankfully, the CT scan and the EKG all came back fine. An ultrasound of his abdomen revealed that both of his kidneys were enlarged and that he had a pocket of fluid in his abdomen.
They admitted him in order to try to get his blood pressure downs and to run more tests on his kidneys.
Long story short Ben was diagnosed with:
Basically a virus he had (probably close to 1-2 months ago) decided to stick around and land in his kidneys. This made his kidneys release too much blood into his urine and meant not enough protein in his blood. This caused his blood pressure to rise (which was causing the headaches) and then the swelling. They said this is a very rare reaction to a virus and that in the future the likelihood of this occurring again is rare.
I will say this about the hospital. They do everything in their power to make it not too scary for kids. They have on demand movies (Ben watched "Smallfoot" 2 times, "Cars 3" 2 times and "Inside Out" 3 times), a wall behind the beds that the kids get to pick the color of...
art carts that come around 1-2 times a day for the kids to choose an activity...
and an ipad in each room that is programmed with age appropriate games for the patient in that room.
Nationwide Children's is a top notch hospital in all aspects.
Ben was released late Thursday afternoon from the hospital. We were sent home with a blood pressure machine, 2 different meds, and orders of a low sodium diet for Ben. We are still struggling to keep Ben's blood pressures down. This morning they were 140/98. That is very high for a 7 year old. The doctor already upped one of the meds on Monday to a higher dosage as it wasn't working like they want. I am currently waiting to hear back from the nephrologist about what they want to do. All I know is that this is very scary for me and I HATE that I can't make him better.
Rachel your life has been hell. Hopefully they can get his blood pressure down and he will feel better. I know when my dh was in the hospital I was a wreck. Praying they will find his right meds and Ben gets better soon.
ReplyDeleteThanks Cheryl! You are right that life has been hell. I just get through each day and put one foot in front of the other. We still can't get his blood pressures down where they want them. I am still worried sick about him even though some of his other symptoms have gone away (the blood in his urine, etc). The nephrology office just called with an update on his meds and to get his blood pressures. She is supposed to call later with any updates once the doc sees what his pressures have been. I just want him to be better.
DeleteI understand. Hopefully this will end soon and he will feel better soon.
ReplyDeleteMy brother had glomerulonephritis when he was 13. The doctors were not sure he would live through the first night. He spent 3 months in bed that summer. Strep was the culprit. There was not a high blood pressure problem. My brother was very ill. This was back in the 50s.
ReplyDeleteThey said this can occur with strep but Benjamin hasn't had strep. All the tests that they did 2 months ago came back negative.
DeleteI scrolled thru your feed to find out just what happened, I am so sorry, this is awful. Glad he is getting better, agree that dealing with ins is a frutstating, full time job. Keep notes, be the squeeky wheel. Sigh. Been there with my own son. My Ex is from Ohio, Columbus has some great hospitals as does Cleveland. My son actually was sent to Cleveland for some testing a few years post accident. Really impressed with the children's hospital, and love the organized roads (grid pattern vs haphazard like out here in CT). Son and I were able to stay with extended family, which made things easier.
ReplyDelete