This was a day of appointments, tough discussions, and frustrations.
Our orthopedic appointment was at 8:30. We got called in to our room at 10:00. They sent us for hip xrays. The attending came in at 10:30 (not our regular doctor, the one we were scheduled to see). She said that she reviewed the xrays with the ortho and Peanut now has mild hip dysplasia. She showed me the xrays, and compared them to ones we did two years ago. There's definately a difference. Since it's mild, the ortho says we can wait a year and then redo xrays, and discuss surgery. If she starts having pain or dislocations from it, we will go back sooner. This is major surgery. Breaking the thigh bone or something and reshaping it? I don't know, it blew me away and I lost what she said. Anyway, we were done at 11:00. So 3.5 hours later, and five minutes of talking to the attending doctor, amnd we were done.
Then we drove to the urology clinic. Unloaded the wheelchair again, all her supplies, and headed to the elevator. Which had an Out Of Order sign on it. :( Went back to the car, put her in the car seat while I reloaded her wheelchair. Lugged her and all our supplies up two flights of stairs. And yes, I have bulging discs in my spine and arthritis in my hip. LOL
The urologist agrees that cath'ing isn't working for us. It is impossible to do it by myself, she is SO strong and opposed to it. I showed him how I try to do it solo, and he agreed it's impossible. He tried, he couldn't do it alone. If we need to catheterize every 4-6 hours, we need surgical intervention. He explained that a vesicostomy is best if you have high bladder pressure, which my Peanut doesn't have. Or didn't, at her last VCUG. He thinks we will be best served by a Mitrofanoff, through her belly button. (Click here for info on Mitrofanoff)
He is ordering a VCUG to check the bladder and it's pressures. I am to log post-void residuals for a while. This should be fun. When my husband is home to help me, I am to check her diaper every 10 minutes. As soon as it's wet, we have to catheterize her and see how much we get out. This would be her post-void residual, or the amount left in her bladder after she pees. He wants us to record 10 of these to get a good average.
The VCUG and post-void residual levels will tell us what to do. Also he says that when we do this surgery, he will be rebuilding her urethra. It does not point in the normal direction, and is situated kind of oddly. So this will be fixed at the same time.
He says this should happen within the next month or two. Wow. Well, at least now we can schedule her teeth to be cleaned, since she'll be sedated. ;)
9 comments:
Oh, those are the absolute worst type of appointments. But I'm glad to read that there are some ideas for you that won't require you to cath solo.
Oh, this is Tammy and Parker from
www.prayingforparker and
www.5minutesforspecialneeds.com
:D
Ok, this tells what kind of doctor we have. I have never had bladder pressure discussed with me or post void issues.
We know that Annabel doesn't urinate unless she is on high IV drips in hospital. She woudl probably only get like 200 cc out in diaper and 250 post void every 4 hours.
Thank you for the information, since we are getting a second opinion you gave me some info to ask.
Your poor peanut! That hip surgery upset my stomach ready about it. Thank you for sharing your information and letting me know you would update. Obviuosly anything you want to pass my way as far as information about our girls is so appreciated.
Again, Thank you,
Yes we will hug our Angel tighter =tonight. Broke my heart about sweet Kayleigh.
Wow!
I wondered how your week was going... And this is the mother of all updates. I've heard that the Mitrofanoff is the way to go if cathing isn't working. Should make it easier for your daughter to participate, too.
I'm thinking about you...
It would be nice not to have to cath all the time. We x-ray Jax's hips often because he doesn't use his legs, he is at risk for hip dysplasia.
Oh no not such a good day. I am praying for peanut, you and the rest of your family. I pray she doesn't need a bunch of surgerys and that her hips start getting better and not worse. What a busy day. Stay strong!
WHEW! What a busy day! HUGS!
Hello friend. I'm not quite sure where the doctor is. I thought he was at CHLA because he's Zoeys doctor and thats were she goes, but he must have a clinic somewhere. I need to ask Heather. In southern Cali somewhere, and I'm sure we'll stop in Disneyland while we are there. Were do you live?
Oh, duh, I remember thinking that you lived right around the area we want to move to. We really like Simi valley though and my hubby's aunt and his cousin that we like a lot live there. But we are Disneyland freaks, if only I knew you a little sooner, we just got back from there a few weeks ago. Next year we are probably going to do season passes to disneyland. We hope to move down there in the next 1 to 2 years, as soon as my hubby finishes school.
Gosh, this is so frustrating for you, I'm sure. I'm so sorry to hear bad news. You are doing such a wonderful job with her though. You guys are in my prayers daily.
Jenna
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