Wouldn't you know after last night's amazing news, there was a series of bad news to follow? That's the cycle my life takes. And this one's pretty ironic.
I've gone back and forth on all of this. I haven't called anyone in my family yet to share the news, because I just don't want to have to tell the story more than once. And I do better processing information when I write it down. I don't want to upset anyone with the details or what-if's, but I've decided to share because it can go a number of ways, and I want it to go only one way.
We had a Urology appointment today. It was a follow up to her latest kidney ultrasound and kidney, urethra, bladder x-ray. I went in there thinking maybe we would leave with a diagnosis of chronic urinary tract infections, and start Bactrum daily to prevent them in the future.
Unfortunately, the images showed more than that. They showed that she has bilateral hip subluxation. I wasn't prepared for that since her therapist hasn't noticed it, and when I asked our neuro a while back if we needed to see an orthopedic Dr., he said not yet. I know with severe cerebral palsy, it is inevitable and she will at some point need hip surgery, but just not now. I'm talking with our Neurologist in the spacticity clinic to make sure he sees the latest x-ray and still feels the same way. I'm not ready to deal with bone and joint issues yet. Obviously, the Urologist was obligated to mention an orthopedic referral...but I'm not scheduling it until someone else tells me too!
Unfortunately, the images showed even more than that. They showed major constipation (which caught me off guard because she goes daily with the help of miralax, and pediasure with fiber) They also showed swelling in her kidneys, and a very, very, full bladder. (again a shock to me since she has regular wet diapers.) There is concern that her kidneys are being affected by the urinary tract infections. Which would explain the blood in her urine, and previous kidney ultrasounds showing edema. The thought is that she holds on to her urine and it grows bacteria (think baggie of water setting overtime.) She has had the VCIG performed before, so we know she doesn't have reflux. But this isn't caused from reflux.
He's ordered a urodynamic test and I'm waiting to hear back for that to be scheduled. Basically, it is a contrast study that through a catheter fills her bladder with dye and we watch to see what happens to it. Does she pee it out immediately, or does it (because of the pressure of such a full bladder) go back up into her kidneys? The prayer I'm asking you all to pray is that she pees it out and everything is fine. And it ends there.
If it is abnormal, we have decisions to make. I wasn't going to go here, but for the sake of documentation, I will.
We will have to decide between two undesirable choices. She will either have to be catheterized every four hours, or we will have to have a surgery that gives her a vesicostomy. Not sure if that's the right word...but where they do a procedure that through a tube she will involuntarily release urine into a diaper (or a bag.) She then loses the ability to feel the urge to go, therefore will always have it and not urinate on her own.
This is all for the sake of keeping her kidneys healthy. Without healthy kidneys, you can't grow and develop, and as a type one diabetic...again, we need strong, healthy, kidneys. She already has a lot of strikes against her.
I wish with all my heart that I could take this for face value. That I could say, OK, she has this problem, it will be fixed, it's inevitable with a child with Cerebral Palsy (kinda like the hip thing.) But I can't. Because I asked him if that was the case and he said no. He sees a lot of children with CP or brain injuries and they don't have this. He does see it a lot with kids with spinal injuries (or SB) and they do have this problem....it's common in those kiddos. But not usually with brain injuries.
So that takes my brain to the other place. Could it be the inconclusive muscle biopsy? The one where they lost the specimen and needed more in order to test her respiratory chain mitochondria? Is this nasty progressive Mito monster going to grab my baby girl up and start wreaking more havoc on her already damaged body? Is it attacking that next system? Sure looks like it on paper to a lot of Dr.'s (except our metabolic geneticist!) She has had problems with pretty much every system. Now we are adding more. It literally makes me sick to my stomach. Makes me cry. And makes me very, very angry.
But I do believe God answers prayers. So, I'm asking for yours now. Please, please pray that those latest tests were because she had a UTI with no cause. That she had a full bladder because she didn't want to pee because it hurt. That the test won't show something major that causes us to have to put her through more stuff...or do another muscle biopsy.
1 week ago