Here’s an update Natalie wrote last night explaining Abigail’s kidney condition and the expected treatment...
We are encouraged because it appears at this point that most of Abigail's kidney will be able to be saved. This morning we left the house just after 8:00 am. Stephen and the kids dropped Abby & me off to check in at the Loma Linda Hospital at 9:30. They went to the park, did a couple errands/explored until we were done.
Abby’s appt. was at 10:00 and we were expecting to be done no earlier than Noon, but were done by 11:30 -- no waiting -- YIPEE!! :) They inserted a catheter for the duration of the test. That went so smooth -- hardly a wince this time! Then the IV. Finding a vein is not such an easy task on a 5-month-old. They tried and failed once and switched limbs and were successful in her right arm. (Same thing happened in the ER.)
Then, as she lay on the table, she was wrapped up like an Indian papoose -- on a body board with the heavy x-ray-apron-material enclosing her. She could wiggle her toes and move her head but that was it for an hour. But as you know, God has given us a content baby. I read to her, played with her, held toys to her mouth to chew on, sang to her, fed her, etc.
There were a couple times when she wanted to grab at something early on and, when she realized she couldn't, she started to get fussy. As soon as I distracted her, though, she was happy again. In fact, at one point she was nearly ready to fall asleep with the pacifier in her mouth, when she decided she didn't want to sleep. So she shook her head left...right...left... in a very playful mood & and giant grin/giggle. It was neat to see how she could be playful even without her arms! So cute!
After lunch, at 2:15 we arrived at the doctor office to go over the test results. He was able to pull off the video onto his own computer and see the test results for himself, even though there was not a written report after such a short turn-around. Our pediatric urologist is semi-retired and no longer performs surgeries. He said the likely doctor to perform the surgery was once his own student and is now his boss -- and he's really good, too. He probably performs 6 of these a month because this is a fairly common problem. But I'm getting ahead of myself.
So first he showed us the images and talked through them with us. There is a definite blockage in the right kidney, but it IS draining -- slowly. He explained that, in the womb, the kidneys and the bladder are formed. Next the ureters grow up from the bladder and connect to the kidneys. In Abby's case, the right kidney formed well, but the ureter did not meet up with the kidney properly. This is the reason for the blockage. It isn't a complete blockage, as we saw today -- it drains very slowly. From what I observed during the test, it appeared to my untrained eyes that the right is about double the size of the left. The technician agreed that it seemed to be at least half-again the size it should be.
So, what's to be done? As I said, the ball is just starting to roll today, heading toward surgery. The doctor explained the procedure while drawing a picture. Let's see what I can do with words. Imagine a balloon with a string dangling down. The balloon being the kidney, the string the ureter. (Obviously not perfect because surgery on a balloon would pop it. Not so, the kidney.) So imagine this unpoppable balloon gets cut across an inch above the knot and an inch down the string. That part is removed. Then the string is reattached to the new base of the balloon. After a little time to heal up again, the balloon is as good as new. A little balloon lost, but not much. That is probably a great injustice to the doctor’s explanation, but I hope it helps.
He said that Abigail is not in a critical condition, but he also doesn't think we should wait 6 months, either. The danger of not operating is that her kidney will continue to deteriorate as well as fill up. If she were to fall hard sometime (down the road, if we waited) there's even a chance that she could pop the kidney, like a water balloon. Which would very quickly lead to a dangerous situation. Again, he's okay waiting a little while, she's not at that point, yet. And he said again, several times now, how good it was for us to find this out ahead of time, before any serious problems arise! Praise the Lord!!
During the surgery, there will be an extra tube (like a teeny, tiny IV) inserted to the sutured area, in case urine tried to seep out past the stitches. This would be kind of like a catheter in that it will flow directly into a diaper that she'll "wear" on her side. And a second tube that will have little pin-prick holes in the tube allowing the urine to pass through within the kidney itself. The reason for this second tube is to help relieve the pressure on the healing kidney. It seems that when he started, 35 years ago, they didn't make a tube small enough and so pressure would build up in the kidney as it was healing and actually pop the stitches. He says that rarely happens now. The tube will be stitched in so it is difficult for her to pull it out (but kids are quick, he warned us with a smile -- so watch out for fast hands!). About a week after the surgery we will follow up and the tubes will be removed. Super-easy removal, just like removing an IV. Once the stitches are removed, the tube slides right out without a problem.
She'll need to be in the hospital the day of her surgery and overnight, then should be released the next day with little pain and able to be cared for normally (except for changing bandages as needed). There shouldn't be any problem carrying her or anything. Such good news!
When will this take place? The doctor filled out the necessary form today. It will be sent in to our insurance for approval. Then the gal who schedules surgeries will work on setting up a tentative date. We should hear from her in two weeks or so. If, for some unlikely reason, we don't hear we are to call her. But she should be calling us in a few weeks. It sounds like we are likely to have the surgery date scheduled two to four weeks from when we get the call. So perhaps as early as 4-6 weeks from now we'll be down at Loma Linda in surgery. And 4-6 weeks from now Abigail will be on her way to being a healthy little girl. :) Praise the Lord!
We'll let you know more once we know more. Thanks to all of you for your love and prayers!
Natalie & Stephen