Today we went to check out two things, his heart and his kidneys/bladder. When he was born his heart was enlarged (not typical for T21) and he had a bladder malformation (also not typical for T21). I had his heart checked when he was six months and was told to come back to check it again, which I did today.
When he was in the intensive care unit at 8 months old, they found that Yirmiyahu had developed a urinary tract infection as a result of the bladder malformation that led to a situation called hydronephrosis (swelling of the kidney due to back up of urine). At that time they said the malformation was a level 5 out of 5, five being the worst, and that they anticipated having to correct this surgically. They told me to wait until he turned a year old to do the surgery since he was so small. At the 12 month check there was some improvement and the nephrologist said there was no longer an immediate need for surgery and that his kidneys were fine. The urologist told me the chance of the structural problem improving without surgery is 20% (which I found encouraging since originally we were told there was no option to surgery). They both told me to keep an eye on it and get further testing done to see how things are going.
So that’s what today’s doctor visits were about.
First his heart. We started with an an EKG and then did an echocardiogram. After reviewing the results, the doctor told me everything looked good. I asked for more details and he told me, “There’s no sign of any heart problem. Whatever was there isn’t there anymore. ” I asked if I need to come back in six or 12 months to check this again, and he said, “No, there’s no problem. His heart is perfectly healthy. You don’t need to come back ever again!” I feel like I should highlight and bold that statement and then make it really big letters because to leave it in normal letters isn’t really representative of how I feel. I think I’ll repeat it. “His heart is perfectly healthy. You don’t need to come back ever again!”
Now about the bladder and kidney ultrasound. I have been and remain apprehensive about this situation. When they found the UTI last year, I hadn’t see any signs of it (the only one I would have seen was a fever but it must have been low grade) and I worry that I could miss it again. This concern is constantly in the back of my mind, that something could be wrong that could affect his kidneys and I wouldn’t be aware of it.
The person who did the scan didn’t discuss the results with me; they give you a disc of the scan and email the doctor the specifics. I was waiting for the disc when another father waiting for his disc came to complain about the long wait. (I had to wait an hour and forty minutes for my disc!) The person responsible for distributing the discs told him that if there’s no problem it will be sent in the mail. Then he started to tell me to go home and wait for my mail, and the person who did the scan came by as he was speaking and interrupted him, saying, “No, she definitely needs to get her results now.” So clearly there’s something wrong. I already know there’s a structural problem and I’m hoping this is all he found but I’ll have to wait until the coming week to find out more about that. It’s a little frustrating to me that he couldn’t tell me anything about what he found and keep me from worrying for another week.
Whatever the results, I’m glad to have gotten all of this testing done today. Obviously the wonderful results are wonderful, but I try not to close my eyes to things that need to be dealt with. Hopefully the results of next week’s doctor’s visit will be good as well.