We just got back from trip #10 to see the Milwaukee docs yesterday. I went into this round of appointments with complete apprehension about meeting the Renal Specialist. We found out last month that Madilyn has deformed kidneys with two collecting duct systems. The good news is that even though they have the deformity they are functioning fine and since she has never had a UTI or unexplained fever they are not concerned at all. They told us that they only need to see her if she has more than three UTI's in one year or multiple unexplained fevers. They also told us that typically if the extra collecting duct system was going to cause a problem it would've already done so. I am thankful that it hasn't and they say it probably never will.
Madilyn was seen by Radiology for the first changing of her g/j tube. She did very well with this as she had not yet woken up from the anesthesia from her eye exam so she didn't even know they did it!
Now for the eyes...Madilyn has Retinopathy of Prematurity (ROP) which has caused complete retinal detachment in her left eye leaving her blind when she was around 3 months old. She had laser surgery while still in the NICU to try and correct it but it failed. The retina in her right eye started to detach so they placed a Scleral Buckle around it when she was 4 months old in hopes it would not detach further. This worked great at the time and when she was 11 months old they snipped the Scleral Buckle so her eye could grow normally and she's done amazing since then. Until this appointment...she once again has a fluid pocket behind the right eye. Her doctor was very upset about it as there is absolutely nothing he can do to remove it without further impairing her vision. He said "at this very moment it is not threatening her vision" but there is the very real possibility that we could get up one morning to discover that she is completely blind.
We were set to see him every six months for the eye exams but with this setback we are back to every two months. In January when he sees her again there is the possibility of placing another Scleral Buckle depending on what he finds. In the meantime, we pray. We pray that she keeps her sight. We pray that if she doesn't keep her sight that it is painless (I have no idea what it feels like to have a retina detach and it terrifies me that it will hurt her). We pray...for understanding...for patience....for the unknown as our life is full of the unknown.
The one thing I know for sure is that Madilyn is happy and absolutely thriving with or without vision and she loves her new fuzzy pink slippers..
No comments:
Post a Comment