Karly keeps us on our toes...

Since my last post on February 27, a lot has happened. On Feb. 28, she went for a test called Lower Extremity Arterial Doppler(by the way that was normal). After lying down 30 minutes for the test, she sat up to leave and noticed that it was difficult to tie her shoes, walking to the car, etc. She took a couple breathing treatments at home with no improvement. We called our NIH doctor describing the symptoms, and she sent us to the ER. In the ER, she was put on oxygen, and eventually a CT was done. She had 1 liter fluid around and in her lungs, with an infiltrate present in her lung. They determined that this could resolve on its own and were going to send us home. Our NIH doctor wanted her observed overnight, so we stayed. She was started on some lasix to remove the fluid. Our NIH doctor wanted an ECHO, but BMH wouldn't do an ECHO. After thinking about what could be causing Karly's symptoms and BMH not thinking this was anything beyond an infection, our NIH doc decided she should fly to NIH. She seemed improved, enough so that on Sunday morning, March 2, we could fly to NIH. We are thankful that the fluid was coming off nicely on lasix. After arriving at NIH, a follow up chest x-ray showed there was still some fluid but it was coming off. An immediate ECHO showed she had Congestive Heart Failure. Her Ejection Fraction(EF) had dropped from 50% on January 1, to 35% on March 2. Again, we are so grateful for our team of doctors here for getting to the issues quickly. Our goal that week was to make sure the fluid was off, adjust her meds to control her BP better, and get her to Panama City Beach, Florida with Campus Crusade for Christ. Meanwhile, we were waiting on some tests to determine a possible cause, what role her existing renal insufficiency is playing, and what do we do next.

Panama City Beach was an awesome experience for her. She learned more about God, made awesome friends, and I'm quite sure God used this trip and Karly's story in the lives of many. She had a very difficult time breathing. She couldn't go to some things, had to stop and rest a lot, and learn to cope with breathing difficulties. By the end of the week, she was pretty shot. She was flown directly from PCB to NIH. After assessing her, she was sent to the ICU. Her Ejection Fraction(EF) had dropped to 15-20% in 8 days. Nobody expected that. It is quite curious as to why this is happening. We only have speculation and are still looking for a cause. Meanwhile, this is a long haul. Her fluid overload is HUGE. Her kidney function is severe. Her prognosis unknown. Here comes a big BUT....

On Monday evening the ICU attending told me that one number they had seen earlier was back to perfect. He was rather impressed because this was unexpected. On Tuesday, they put in a Swan-Ganz Catheter which goes through her right atrium, her right ventricle, and into the pulmonary artery. This gives them precise numbers, so they can adjust medications and removal of fluid better. While the fluid level was more than they thought, the heart was better than they thought. In fact, an ECHO was done after the Swan went in, and the EF had come back to 33%. This got a "WOW" from the ICU attending. He said clearly he doesn't understand Karly and this situation. She has also been able to reduce the amount of oxygen she needs. She is still bed-ridden, sore, in pain from severe headaches(probably from high BP and BP medication), and really very sick. We don't know much beyond day to day right now. We do know that her numbers are trending in the right direction. Praise God! I was reminded today to read Psalm 139:

¹ You have searched me, Lord,
    and you know me.
² You know when I sit and when I rise;
    you perceive my thoughts from afar.
³ You discern my going out and my lying down;
    you are familiar with all my ways.
⁴ Before a word is on my tongue
    you, Lord, know it completely.
⁵ You hem me in behind and before,
    and you lay your hand upon me.
⁶ Such knowledge is too wonderful for me,
    too lofty for me to attain.

⁷ Where can I go from your Spirit?
    Where can I flee from your presence?
⁸ If I go up to the heavens, you are there;
    if I make my bed in the depths, you are there.
⁹ If I rise on the wings of the dawn,
    if I settle on the far side of the sea,
¹⁰ even there your hand will guide me,
    your right hand will hold me fast.
¹¹ If I say, “Surely the darkness will hide me
    and the light become night around me,”
¹² even the darkness will not be dark to you;
    the night will shine like the day,
    for darkness is as light to you.

¹³ For you created my inmost being;
    you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
¹⁵ My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
¹⁷ How precious to me are your thoughts, God!
    How vast is the sum of them!
¹⁸ Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you.

¹⁹ If only you, God, would slay the wicked!
    Away from me, you who are bloodthirsty!
²⁰ They speak of you with evil intent;
    your adversaries misuse your name.
²¹ Do I not hate those who hate you, Lord,
    and abhor those who are in rebellion against you?
²² I have nothing but hatred for them;
    I count them my enemies.
²³ Search me, God, and know my heart;
    test me and know my anxious thoughts.
²⁴ See if there is any offensive way in me,
    and lead me in the way everlasting.

God knows what is happening; we intercede for her; we trust God.  He is good.
He is trustworthy. Thank you for remembering us in prayer.

Love,

Mom