Dylan had to go back to Rady Children's Hospital again for a kidney/testicular ultrasound and a VCUG. A VCUG is a procedure where they insert a catheter into the bladder and inject dye into the bladder to see if there is a reflux of urine up into the kidneys. Dylan was diagnosed with grade 3 kidney reflux at birth and has been on Amoxicillin daily, so this was just the follow up. I usually go into appointments with no expectations because I don't want to be disappointed. Good thing because he still has the reflux, it is no better, he has not grown out of it like they thought and he actually has dual ureters on the right kidney - which I never recall the doctors telling us. Then he had the kidney ultrasound and his kidneys still are measuring small but there is nothing they are going to do about that and his testicles have moved down into his groin.
After these two procedures I took him over to the Urologist's office to hear what he had to say about everything. Well, he told me that he is the most concerned about the reflux because it can cause kidney damage down the line and it is the first thing he wants to fix, but he wants to wait until he is 20lbs! I laughed and told him that Dylan might be 2 yrs old before he is 20lbs. Of course because of the dual ureters on the right side it makes the repair more difficult - figures! So, right now he just wants to keep an eye on things and see him back in 6 months for some more testing and wants me to keep watching out for UTIs.
These videos I took on my phone while Dylan and I were waiting for his next appointment. He was talking up a storm and acting so cute, he sure makes me smile.
Sorry to hear that the reflux is not improving but glad to hear that they are giving Dylan more time. I think our little ones need some extra time to grow out of things. it seems that all their development is typically behind the curve so why should resolution of kidney defects be any different. Praying that time is all he needs and the next appt will show great improvement.
ReplyDeleteI'm sorry you didn't get good news yesterday. These babies surprise us though so I hope and pray that Dylan's reflux improves without surgery. Great videos, it looks like he is feeling better.
ReplyDeleteHi there,
ReplyDeleteI hope you don't mind me popping in. I saw a link to your blog on Hannah's blog. I am another Mumma who has a son with WHS. He is nearly 8 years old. Hehas very severe Gastro-Oesphagael Reflux Disoder and has been medicated since he was 10 months old.
I hope that Dylan can grow out of it or that it improves with surgery.
Dylan is just beautiful. It is lovely to meet you and your family. We also have a blog if you have spare time to pop over.
All the best x