Xander had his appointments at Primary Children's Hospital today. First they had us go back . I don't remember what it was called. It's probably one of the worse things a little guy can go through. They put a catheter in him, I couldn't bare to look. Then They put the IV in his wrist. It collapsed. They tried his foot next, then his head. It was so sad. He had to lay there for 45 minutes. He screamed the whole time. All I could do was hold his hand, wipe away his tears and dip his pacifier in a cherry syrup for him to suck on. It was so sad. I tried not to fall apart. Next they took out the IV. We went to another room to have them do a Fluoroscopic voiding cystourethrogram (VCUG).
When he looked at his right kidney, he went silent and went to call for the doctor. That really scared me. They had him moved to different positions, and after a while they were done. The doctor just told me, with a nice smile that he was going to send the results up to urology. That scared me even more. I felt like they knew something and I wouldn't find out for over an hour and a half. Later at his Urology appointment the doctor told me a bunch of stuff that I only remember bits and pieces. I really should start taking a recorder to appointments. He said that Xander's kidneys aren't very good to start with. He has Vesicoureternal Reflex, level 5, which is the worst. We have to give him an antibiotic every day to keep away infection, which could cause kidney damage. We're going back in 6 months. After a year if his kidneys have gotten worse or look the same They are going to have to do surgery to fix them. It's very unlikely that they will get better where he's at level 5 and born with it. Right now I'm just praying that he won't get any infections and that I can maybe pull myself together for tomorrows bigger day of appointments. I just don't know what else to say. I can't stop crying, and who knows what they'll find tomorrow. If you want to see more information on Vesicoureteral Reflex here are some sites.
www.pedisurg.com/PtEduc/Vesicoureteral_Reflux.htm
emedicine.medscape.com/article/439403-overview
Oh Nicole! I will pray for you and little Xander. It is so hard to watch your child suffer and you keep having to do it over and over. It is okay to cry. I cried just reading your post. You are doing such a wonderful job with your precious little ones. Thank you for sharing your experience (and medical links) here in your blog. I know you are not trying to be an example (you are just doing what is best for your children)-- but you are amazing!
ReplyDeleteI am going to put all of your names on the prayer roll at the temple ASAP!!! I wish I could do more to help. I don't work Thursday or Friday this week. Is there anything I can do on those days for you? How about dinner? I'll send you an email.
ReplyDeleteLove you!
I'm so sorry, Nicole. Your sweet little family is always in our prayers.
ReplyDeleteI am sorry you are having to go through all this, I pray you will be strong and that both your children will grow to be big and strong. Love you sweetie.
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