Friday, January 16, 2009

Good News & Bad News

First of all, THANK YOU SO MUCH to all our dear friends and family who faithfully prayed for us and Maddie today. We definitely felt God's presence and peace when we were at the hospital.

The good news...
Maddie was a little angel during the procedure. In fact, the nurses commented that they rarely see 2-year-olds who are so cooperative and well-behaved! She thought all the huge x-ray machines and computer screens were so cool and she wasn't intimidated at all. After she changed into her gown, I saw her raise her arm up and say, "Here you go" and I couldn't figure out what she was doing until I saw the nurse coming with the little machine to take her temperature...Maddie was ready and waiting! HA! Guess she's done this before. :-)

They gave her a light sedative to make her drowsy while we chatted with her and Keith read her a book. Amazingly, when they put in the catheter she didn't make a peep--I'm not sure she even noticed it! They took x-rays, then put a dye in the catheter so that we could see and take pictures of the flow of liquid from her bladder, up the ureter tube to her kidneys. In a normal case, when the body produces waste products they are filtered through the kidneys, travel down the ureter tube into the bladder, and then are emptied out from there.

The bad news...
Maddie's kidneys are not functioning normally. I'm not sure if she has kidney damage (or to what extent...that will be for future testing!), but we did find out that she has what's called vesicoureteral reflux (VUR). This is when the valve between the bladder and the ureter tube does not close off properly, allowing urine to reflux (back up) into the ureter tube and back up into the kidneys, which exposes the kidneys to infection. There are 5 stages of severity ("grades") for this type of reflux. Maddie's right kidney (the one that's too large) is moderate/grade 2, which kids usually grow out of by age 5 about 90% of the time. Maddie's left kidney (the one that's too small) is severe/grade 4. This severity of reflux is almost always treated with surgery. The radiologist said that, most likely, these problems were present when she was still in the womb and that the ureter tube and/or the valve did not develop properly. The surgery usually involves lengthening the ureter tube and/or replacing the valve. We will now be going to a pediatric urologist at OHSU, Dr. Skoog. He's doing a nationwide study on kidney reflux and the use of long-term prophylactic (preventative) antibiotics (which is a controversial topic) and he's also one of the few people in the area who does this type of surgery laparoscopically, which would be great, since the healing would be much easier on Maddie. I read that this procedure is done under general anesthesia and only takes about 20 minutes. In the meantime, Maddie will start taking low-dose antibiotics to prevent further kidney infections until we have a definite plan of action.

Today when we got home from the hospital, I went straight to the Internet to look up information. Especially when it comes to medical issues, having some background knowledge and information under my belt helps me feel much more calm and prepared...perhaps that's the teacher in me...I always like to be over-prepared, just in case. (Funny, when the doctor called me with the results tonight and I started asking questions she said, "Wow, it sounds like someone's been doing their homework!") :-)

This may be a long road for us, but for now I'm feeling very optimistic and at peace about everything, even the possibility of surgery. Of course, it's not something I'd want Maddie to have to go through, but on the other hand there are much worse circumstances in this world that we could be facing. I'm so blessed to have such a wonderful husband and precious daughter and the support and love of all of you! Please continue your prayers! Thank you!

5 comments:

Christine Cohn said...

Oh, sweet Maddie. What a good girl being so willing to go through all of the tests. Such a cooperative girl! Now we'll pray that those little kidneys of hers cooperate. Prayers will continue to cover her, and the two of you, as this journey continues. For now, give her a HUGE hug from Auntie Christine. :) xo

Anna Marie said...

Lisa, I just read your last two e-mails tonight. I will be praying. I love you friend.

Katy said...

You do have an angel daughter. I will continue to pray. This can be scary but I'm glad you are placeing your trust in the One who is able to do exceedingly great things. Love you all.

Ginger@chirgies said...

Wow. You have such a good perspective Lisa. It's not something you would wish, but you're right, there are so many worse things out there. Being up at OHSU and Doernbecher really helps with that whole 'putting it into perspective' thing. Love you and will continue praying for you and little Maddie. Keep us posted.

Heather Elizabeth said...

Lisa-We will be praying for your family! God is in control and LOVES you, Keith and Maddie. Maddie is such a doll and a gift from God. I am praying for peace, comfort and healing. Love you!