Beautiful Life

Hey child up and go; A big world is out there waiting for us to live in every day. Outside you will find, there is love all around you; Takes you, makes you wanna' say; That it's a beautiful life and it's a beautiful world and it's a beautiful time to be here, to be here, to be here. -Fisher

Thursday, September 11, 2008

Nothing definitive

I was hoping for a yes or no answer yesterday, but I did not get one. Understandably, this guy does not want to rush Claire into a surgery when she is clearly doing very well right now. While she did run a low temperature on Tuesday evening, it went away on it's own very quickly. And, though she did have cloudy urine, which did not clear up, it also did not get progressively worse. Those were all good signs! One symptom, which you would think would be good, is not. Claire remains completely dry between catherizations. This is very uncommon with neurogenic bladder unless you are taking medications, like Ditropan, to relax the bladder muscle so it can hold more urine. Dr. A. believes that she does not "leak" because she is still refluxing. And, that is not good.

At our last visit, Dr. A put Claire on a regimen of twice a day antibiotics for a period of 30 days. He intended her to refill this bottle and continue on, but he failed to put a refill on the prescription so I thought he meant for her to stop them when the bottle was empty. She did and he was impressed that she did not have a full blown relapse but he thinks it is best if she stay on prophylactic antibiotics. So, we are back on Furadantin, but only once a day now to see how she does with that.

He is "cautiously" hopeful that her reflux and the condition of her ureters will improve with antibiotics and CIC (clean intermittent catheterization), but he still feels that in the end, she will benefit from ureteral reimplant surgery. If she has another UTI in the next three months, then it's a done deal. Otherwise, we continue as is until December. On December 3rd, Claire will go in for another renal ultrasound and VCUG (voiding cystourethrogram). This test will check the condition of her bladder and ureters as well as expose the level of reflux she has. The first time she had this test she was at a level 5 on a scale of 1-5 with 5 being the worse! Many children improve once CIC begins but I say the Doc is "cautiously" hopeful because he admitted that a lot of damage was done to Claire's bladder and ureters during her life in China and he isn't entirely sure that she can recover on her own. He also feels that while her kidneys are still in good shape, she lost some kidney tissue to damage (this was the first anyone mentioned of this) and he doesn't want her to sustain anymore damage caused by continuous reflux and infections.

So, I guess my answer is.....we still don't know. He sounds like he really feels she needs the surgery but he wants to give her body some time to heal itself first.

One question I am often asked about all this is "will surgery cure her condition?" The intention of the surgery is to eliminate the reflux issue. There is not a "cure" for neurogenic bladder. The nerves that control Claire's bladder were damaged as a result of her spina bifida. In other words, she was born this way. At this time, there is not a way to repair those nerves so there is no way to "cure" this condition. It can be managed and many, many children and adults do just that. As Claire grows older, she will be able to learn to catheterize herself. Though I have exposed her "secret" to all our family and friends, not to mention strangers on this blog, theoretically, she could go through her adult life without her friends even knowing unless she choose to bring them into the loop. It is my hope that she grows up to understand that God made her this way and that it is nothing to be embarrassed or upset about so it doesn't matter who knows. Realistically, I know she will go through a time when she doesn't want everyone discussing these aspects of her life. But for now, we act like it's nothing unusual. Maybe I'm wrong, but I think that's a healthy attitude. I just have to hold onto the thought that the Father chose us for her and that He knew how we'd parent her. Hopefully He won't let us make any mistakes that can't be rectified!!

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

~Psalm 139:13-14

Our happy girl!

1 comment:

The Source said...

She will go through a time when she wishes she wasn't any different that other kids. But, if you think about it, don't all kids go through that? About 4th-7th grade? It's just a little bit more difficult for children with disabilities or medical issues. I just keep reminding Zach that he may walk differently and wish he didn't, but other kids have things they wish they could change, too. Some kids are upset over the size of their ears or nose, their weight, they think they're's a rare child who doesn't go through this. By the time Claire gets to the age where it's going to matter to her, she will have established friendships and her identity and confidence in herself will be sound enough to get her through those rough times. She has the benefit of a family who loves her unconditionally and she'll know a God who loves her so dearly.

Zach outgrew kidney reflux, but those VCUG's were no fun. We'll be praying for her. I hope she can avoid anything major. Can't wait to see how she does with her new feet!!