Friday, November 9, 2012

Tamsie Update

... because I love this sweet little picture of Tamsie taken by Melissa
We just got in from Tamsie's appointment this morning, and I am happy to say that we got some very good news! Here is the best news of all:
1) She doesn't seem to have an obstruction, and if she does, it's not causing any problems to worry about currently. The main problem is the reflux, and it's a LOT better to have one problem to deal with in this area than it is to have two concurrent problems.
2) She does not need surgery urgently.

So many of you have been asking me what exactly is wrong with T's kidneys. I don't think I've ever really explained it on the blog. I will do my best, although you should know that I took exactly two science classes in college, and they were not by choice, so don't expect much of an amazing medical description here!

Well during my last ultrasound, once I was already in the hospital and they were trying to stop contractions, the doctor discovered that Tamsie had a dilated kidney. They made a point to check on it once she was born. In the NICU she had a kidney ultrasound, and it came back abnormal, so they ordered another one. It also came back abnormal, and it appeared that her urine was refluxing back up into both kidneys, with one kidney significantly worse than the other. While still in the NICU, she started receiving antibiotics each day to prevent a UTI, which this whole reflux thing would make her very susceptible to. At first when I heard this, I thought, "UTI, no big deal." But alas, a UTI is a big deal in a baby whose kidneys are still growing and developing. Any given UTI that she picks up could cause permanent kidney damage. It could also land her a trip to the hospital. This is nothing to play around with. The only symptom she would have that we could recognize as a possible sign of a UTI is a fever, which is why she has to go to the doctor any time she runs a fever - to test and make sure she doesn't have a UTI. It's not just that she has a paranoid mom- ha! ;)

So they referred her for a VCUG and a MAG3, which are imaging tests that give them a better idea of what her urinary system is up to. I should add that during her MAG3, a nurse messed up her IV and put the needle in one part of her hand and out the other - which left me with a sharp distaste for the children's hospital in Louisville, even though I know that's not entirely fair. It is, however, perfectly rational to a mama bear. Our doctor suspected that in addition to reflux, she had some sort of obstruction in her urinary tract. When we met with our doctor in Louisville, he told us the plan would be to keep an eye on it and see what it did over time. At each check-up, nothing had changed, for better or for worse.

An important side note to mention at this point is that her kidney situation was not caused by Twin to Twin, nor did it result from being a twin or from being born prematurely. It just happened, and it would have happened regardless.

So then we moved to Memphis and started seeing a doctor here, who ordered a new ultrasound to see what was going on. It revealed that nothing had improved, but that the situation may have actually worsened. To know more, we would need another VCUG and another MAG3. That's what Tamsie had done at LeBonheur on Monday. Although there was lots of crying on T's part, we felt very blessed this time around, because one of her nurses was a dear family friend, so we know she received extra special care. There would be no needles going through hands this time around! Also, she fell asleep during the greater part of the MAG3, which was a blessing because it's an hourlong test.

Today we met with the doctor, who told us that the problem is not an obstruction. The main problem is hydronephrosis, which she has in both kidneys, with the left one significantly worse than the right. Basically, an enlarged kidney takes longer to drain, just like a jacuzzi tub takes longer to drain than a regular bathtub. This is caused by the reflux. At the level she has it, these cases rarely go away on their own, although the doctor can think of one patient whose advanced reflux situation spontaneously resolved. We're praying that happens for Tamsie if that is God's will. If not, she will have to have surgery sooner or later, although this is a pretty routine surgery with a 98-99% success rate - a rate that is pretty much unheard of in medicine. So I asked the doctor today that if your child has to have something wrong -- which NO ONE wants their child to have ANYTHING wrong, obviously -- but whether this is a good thing to have wrong because it seems to be so correctable, and she said YES. So that is excellent news! I'm totally resigned to surgery for her if that's what it takes for her to have healthy kidneys!

The question that remained was when to have surgery. The doctor asked me if I had any gut feelings on the matter. I didn't, so I asked her what she thought. She said that if it were her kid, she would hold out a year, and so that's what we're going to do. In the meantime, Tamsie will go in for ultrasounds every three months to make sure no kidney damage is taking place while we wait, and if anything happens, she'll have to have surgery immediately. But otherwise, the doctor said it's best to have the surgery when they're still too young to really know what's going on and dread it, but that it's also best to wait until they're a little bigger than Tamsie is right now. That's fine with me.

But of course, we're praying that surgery doesn't even factor in anyway, because we're praying that she gets healed! But it is nice to know that if God does intend for her to go through with surgery, that it's not a grossly major thing. And that it's pretty routine. I feel like I can breathe a sigh of relief for the moment! Thanks for all the prayers you have prayed as this day has been on the horizon! :)

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