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Wednesday, April 17, 2013

One of a Kind

For the second day in a row a doctor told me today, "I've never seen anything like it!"




Now there is no question that my Riley is extremely special! Both of my girls are. She is absolutely one of a kind! But from a medical perspective, sometimes being one of a kind is good news and sometimes it is really, really not so good news.

Yesterday Riley had what we thought was her pre surgical appointment at her ENTs, Dr Duncan. A while back we attended a feeding conference and the feeding specialist thought Riley was tongue tied and needed to have surgery to cut her frenulum back. I was all geared up for surgery at the beginning of the summer. But the good news (depending on how you look at it) is that Riley is not tongue tied but just has a really short tongue. Not having surgery sounds great to me. But on the other hand, we were hoping that surgery would solve alot of her feeding issues. Back to the drawing board on that one.




Then today Riley and I took the 45 mile trip back to Texas Children's for her important renal clinic visit to address her high blood pressure. Dr Riley met with several other renal specialists this morning about Riley at the urging of Dr Jeewa, her cardiologist. They looked at all the blood work we did yesterday, the blood work and kidney ultrasound that we did in February and her historical blood pressures. Dr Riley's highly educated response was "we've never seen anything like it." And for the second day in a row of hearing that, my heart sank.

Riley's kidneys are just really small. That is concerning. For some reason they are producing a protein that they shouldn't which is causing her high blood pressure. The two major possibilities of causes of this is...one, that the kidney cell structure itself just didn't develop correctly, or fully develop. And two, that the blood vessels that go to the kidneys are narrowed and so the kidneys have not received enough blood flow. In the next couple of weeks we will be doing more testing to figure out which it is. That includes going home with a blood pressure machine that will take her blood pressure every 15 mins for a 24 hour period. And an angiogram which will be a sedated CAT scan with dye contrast being sent to her kidneys. Neither of these will be easy or fun for both Riley and I.




The fantastic news is that right now her kidney function is good. Not surprisingly, little Riley has figured out a way to compensate for her little kidneys. The bad news is the doctors best guess is that Riley will eventually develop kidney disease. Treatment for that can result in dialysis and (here we go again) a transplant. And of course since we've had to think about transplants before, we know there is big questions on wether Riley would ever qualify for a transplant because of her disabilities.

But that is far down the road, IF it even ever comes to that. And it is just an educated guess that it will. My heart continually reminds me that Riley has been proving doctors wrong for a very long time! It's kind of what she does. She is a miracle and has been the blessed recipient of so many miracles up until now. So what's one more?

But I gotta say, despite trying to focus on that, I am more then discouraged tonight. Now we have one more damaged organ, one more specialist to see, and possibly more diagnosis to add to Riley's long list. That means more doctors visits, more tests, more pokes, more tears and more fear and pain for my baby! They want her to have blood drawn every 3 months and a kidney ultrasound and clinic visit every 6. How much can I ask of this sweet girl?

I have been reviewing my darling princess over in my head all afternoon. In its simplest terms, from a medical perspective I think...small head, brain with too many "bumps", weak lungs, enlarged heart, small kidneys, seizures, non verbal, weak eater, uncooperative muscles. But from a Riley perspective I think...the greatest smile I've ever seen, the best laugh I've ever heard, full of life and love, and a spirit that's so close to heaven.

Now that's the part I'm going to focus on as I go to bed tonight. It will help me get through the other part! And I know it is constantly the part that she focuses on. Once again she's an example to me! And if she could talk, she would probably say..."Mommy have faith! What's one more miracle?"


- Posted using BlogPress from my iPhone

6 comments:

  1. So sorry you have to face these struggles. Maybe, if you were less perfect? God would have to try you with so many burdens.

    Also--Riley can have my kidney, lung, or any part she wants of me!

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  2. Oh Emily I am so sorry to hear all this :( You are a the strongest mom I know. Keep up the wonderful work you are doing the best you can for sweet Riley. Continued prayers for her and you!

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  3. When we got the latest eeg results on Jonah a year ago that basically said he has zero brain activity, just exactly the same as when he was a baby, I decided it was time to just ignore the neurologists and the doctors' prognosises completely. Jonah is just Jonah, not a diagnosis or a case- and he is obviously not brain-dead so why should I give two cents about a test or a doctor that says he is? He functions and communicates in his own way and in his own timetable. You will know in your heart how and what to do and when you need to do it, and she will help to show you the way. And I'm sure you know in your heart, as I do in my mine, that the time you have with this perfect beautiful child will be much shorter than most parents' have, and to treasure every moment you get; in our case we've chosen to make that mean much more time with his family and much much less with medical professionals. After all, this imperfect body is just a temporary shell, it's the spirit that really matters and that needs the nurturing as much as the body does. You're entitled to extra measures of comfort, peace, and revelation- don't forget to lay claim on those blessings. I don't know you in person but I love you in spirit and I love your precious babies. If I had an envy of you it would be Riley's gorgeous smile, I have only seen Jonah almost smile once or twice as he was trying to go back Home, my fondest dream is when he gets his perfect body and can smile at me. I've learned that it's ok to not be strong sometimes and run to the One who knows all we endure and who has already been there for us and is willing to go there again with us, and let him take the burden for a few hours of rest. Lots of virtual hugs and prayers for peace and angel companions for you tonight Mama to help strengthen you and watch over your babes. Love!!

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  4. I agree with Casey that since you are already so perfect, Father in Heaven has to work extra hard to try you.

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  5. Riley is an angel in our midst. And she has been sent to an angel mother.
    We know the mortal problems are hard, but the spiritual highs far exceed the low points.
    We love you Miss Emily, Miss Riley and Miss Keegan.... and you too Miss Joan.

    Pa Papa

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