Today we had our appointment with the Pediatric Surgeon here in Missoula, Montana. She was a really nice lady, older with a wonderful British accent. I had sent her ALL the information and pictures I had been given on B'Elanna's surgery in China, and I had sent her a Bunch of questions before our appointment. She came in and started asking all sorts of questions about how B'Elanna has been doing both physically and socially since I got her. Her nurse was in the room and kept B'Elanna entertained with toys and Bubbles, so I was able to concentrate on talking with the Doctor.... and she was also able to observe how well B'Elanna moved around the room, interacted with the nurse and the toys, listen to her talk (eventually) AND observe how intelligent she is.
She and I discussed the need for a getting a genetic test done to see if there is anything else going on with B'Elanna that we can't see and isn't presenting itself. She said there really isn't a need for that. Cloaca is not a genetic disorder, but an interutero development issue and IF any of her other systems were affected... it would have presented itself already.
She educated me that with Cloaca, we also need to consult with a Urologist for all the tests that B'Elanna is going to need AND she recommended that she be sedated for most of the procedures. I told her that was perfect.... I was going to request that!!
I talked with her about these weird diapers B'Elanna keeps having.... Urine diapers that smell like stool and sometimes have a "sandy-like" substance in them. I told her I am concerned about a fistula or something. I told her (and showed a newly collected sample, hehehehe) about the dry stool diapers B'Elanna has been having... even though I am giving her the Miralax and as much apple juice and water I can get her to drink. She confirmed that she is a bit dehydrated... but that I am doing everything I can be doing. She said to keep up the Sweet Potato/Apple Juice/Water regiment I have had her on. She said I could try increasing the amount of Miralax I am giving her, it won't have any longterm negative effects on her intestinal tract and it isn't addictive... it will just help pull more water into her system.
She did her exam of B'Elanna. She explained how the her surgery would have been performed. She said she thinks she only had one surgery... where they created the Urethral opening and Anus at the same time. She said all of her orifices healed well and are a good/great size. She said there are not any external fistulas and she does not see a need any further surgery to move the anus. (I had thought it had healed to close to the vaginal opening). We discussed what I have been calling a "hemorrhoid"... she confirmed that NO it is not a hemorrhoid, but a part of the intestines that had been brought down to create the opening. She said there is nothing that can be done about it and there is a good possibility that as she grows it will "go away or be pulled back in or stay." Since she had it when I got her in China, she said B'Elanna probably had to strain during a bowel movement and that is how it got started.... just like a regular hemorrhoid.
So.... what can the Doctor do for us. Well, we have a few tests we need to get completed so we can know what is happening INSIDE B'Elanna. They gave me a kit (bag) to collect a Urine Sample... this is going to be interesting. They are scheduling a kidney ultrasound for this week or next... depending on if we need Tricare Authorizations or not. She said needs to consult with the Pediatric Urologist about the tests he would also recommend. The difficulty is he only comes to Missoula every other month and he is full for December, which means we couldn't see him until February. I said I am willing to travel to Seattle, depending on Tricare approval, to get an earlier appointment.
OK... so tests needed:
* Urine Sample
* Anesthetized Kidney/Bladder Ultrasound
* Anesthetized VCUG (Voiding Cystourethrogram)
* Anesthetized Barium Enema
* Anesthetized Spinal MRI - to look for tethered cord
The Doctor wants to try and do most of these at the same time and let me know that she would be in the hospital overnight. Once we get these tests, we will be able to determine what we need to do next.
I asked her if there is a way to test the nerve conduction, she said not really. She emphasized that to not start/push potty training right now. Her body isn't ready and until we get some of these test we can't know IF/WHEN it will be ready. She said most of these patients aren't ready until they are 4-5 years old.... but if she wants to sit on a toilet like all the other kids at the Preschool that is fine.
After the Pediatric Surgeon appointment, we had an appointment with B'Elanna's Pediatrician to get her second round of Immunizations. Poor kid go 5 shots!! Afterwards, we had to go back to the Preschool to drop off some paperwork and let the Director know some of the things the Surgeon had said. By the time we got home, B'Elanna was walking like her poor little legs were killing her. :( :( :( Needless to say, she was a bit cranky tonight and had been a bit restless and crying out tonight while she is sleeping.
UPDATED MEASUREMENTS:
Weight: 25.2 lbs (Gained 2.7 lbs since Sept. 3rd)
Height: 34 inches (Gained 0.5 inches since Sept. 3rd)
Well... off to try and collect a urine sample!!
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