Friday, October 12, 2007

Interesting twists

Katy came home from the hospital last night. Paul went to get her and I stayed home to get her “hot tub” ready for a long, hot, soak when she got home. She took a bath and went right to bed and slept eighteen hours without pain medication. At four this morning I checked on Katy and her body was soaking wet. I woke her up and immediately she said, “Mom! My nausea is gone and I’m so hungry!” Today she is able to eat baby food. Her nausea and abdominal pain are low.

Four weeks ago our family and extended family joined together and fasted for 24 hours, dedicating ourselves to God in prayer for Katy and others in our family. We communicated by email throughout the day including our prayer requests for each other. Aunt Lil prayed that Katy’s adrenal glands would be miraculously healed. It was shortly after that when Katy got very sick.

One of the reasons Katy was sent back to the hospital was a fierce looking boil under her arm, that appeared immediately after her hospital visit last week. When I showed it to the doctor on Monday and asked him about MRSA he was very abrupt with me and told me that it was probably an ingrown hair follicle. I finally told him that whether it looked like it to him or not I thought a culture of it would be the wisest thing so he drained it and took a scraping of it. Although her blood tested negative for MRSA, her skin culture from the boil was positive for MRSA. At that same appointment, Katy told him that she was so extremely nauseated that she felt poisoned. She told him how the nausea, diarrhea, and finally vomiting, had plagued her for the past few weeks along with severe stomach and bowel pain, accompanied by another adrenal crash. Once in the hospital a strong antibiotic was started while the lab cultures were in incubation. Cultures begin to grow bacteria within twenty-four hours. Except for the nausea, she started to feel a little bit better on the antibiotic. The IV antibiotic was changed over to oral medication Wednesday night in an effort to continue her care at home. Katy began taking Bactrim by mouth that night. She started feeling a little stronger and the medication stayed down, so by late afternoon yesterday she was released to come home. Paul and I suspect that she did have a nasty bacteria in her stomach and bowel and that it had caused many of her problems over the last few weeks. If not for the boil, there would have been no obvious reason for the doctor to put her on an antibiotic.

Now here is the interesting twist. After Katy had experienced severe diarrhea for three weeks, we discovered last Saturday that all of her daily oral medications (including prednisone) had passed through her body that day, completely whole and unabsorbed. Although she was still experiencing abdominal pain and nausea, her adrenal system seemed to be working fine. Remembering Aunt Lil’s prayer, we began to discuss the possibility that Katy had already gone through a prednisone withdrawal. That would explain her adrenal instability and aching body for the past three weeks. Since she had absorbed no prednisone on Saturday, we asked Katy if she wanted to try cutting her prednisone from her normal 20mg to 10mg to see what would happen. She did, on Sunday, and nothing happened. She was fine. The next day she said, “I want to try 5mg today and see what happens.” Nothing happened! Since Monday she has been on 5mg of prednisone daily. Her blood sugar, pressure, and temperature are all in the normal range, and her blood levels were monitored daily because she was in the hospital this week to treat the infection. She has not needed additional potassium or magnesium for the past five days. To go from 20mg to 5mg so quickly without adrenal failure is a miracle. It was just last week that one of the GI doctors said that if we keep trying to lower her prednisone we could risk her life at this point. Her endocrinologist said last month that he would try to help her taper off prednisone gradually but it would take a year or more. At 5mg, Katy is on a low enough dose of prednisone that she will be seeing a huge improvement in bone density and muscle strength. Her skin had become very thin and marked with what is known as ribboning. That will all improve.

In what seemed at the time like a horrible nightmare, the past three weeks were about tearing her down to build her back up. She experienced one of her lowest times in this HPS journey (see the posts from September 28 to October 5). She would be the first to say that she wouldn’t want to have to do that again, but the pain has produced a great gain for her. This was prayer being answered. During that time of extreme suffering, we believed that God was up to something. Some of her doctors, believing Katy was anorexic or enjoying the attention, treated her so poorly that we have been on a quest to replace them! We have found some new ones who are excited to take on this HPS mystery, and she will begin seeing them before the end of the month.

Many of us will be fasting again on Saturday, October 13. Anyone could have looked at Katy during the past three weeks and said, “Where is your God now?” Even several of her doctors had deserted her. If not for our steadfast resolve to leave Katy in God’s care and to trust Him, this journey has the potential to destroy us. We choose to believe that God is with us and carrying us through the most difficult circumstances. During this ordeal, Katy and I meditated on words from Jeremiah and they strengthened us. Whatever your circumstances, whatever your heartache, hold on and savor these words: Your words are what sustain me; they are food to my hungry soul. They bring joy to my sorrowing heart and delight me. How proud I am to bear your name, O Lord. Jeremiah 15:16

Comments:
  1. Sandy Says:

    Oh how this post made me smile! I’m so glad Katy is home and that she is able to be on such low amounts of steroids after all this chaos with her health. Praise God for this incredible and unexpected twist!

    I hope you all have a wonderful weekend! Prayers continue from here always.

  2. Lillian Oliveira Says:

    PRAISE HIM, PRAISE HIM, TELL OF HIS EXCELLENT GREATNESS, PRAISE HIM, PRAISE HIM EVER IN JOYFUL SONG!

    He is Jehovah Rapha. the God who heals! Only medical people can perhaps understand how miraculous indeed is this miracle!

    Love, Aunt Lil

  3. Doris Harriff Says:

    When Katy has been at her worst, my inclination is to respond - what can I say, except that I’ll pray for her. And now - what can I say, except Praise the Lord! He has indeed done marvelous things!
    Aunt Doris

  4. Jes Says:

    Wow - and WOW!!! This is so wonderful! I’ve been checking the blog all day - now that I’m back at work - I find that during a spare minute here or there - I’ll check to see if there is any news….Praise the Lord for this amazing twist! I can’t fast with you all on the 13th because of feeding the baby - but I will pray ernestly tomorrow for God to continue to be glorified, for Katy’s strength to return and for this new chapter/season of life to be more wonderfully ‘normal’!

    We love ya’ll!
    Jess

  5. Lindsay Says:

    PRAISE THE LORD!!!!! Katy, I am so glad that you were able to sleep so well and able to eat some too :-) I will keep praying! Have a wonderful weekend with your family.

    Love,
    Lindsay

  6. Adam Thompson Says:

    Ww, ptl for such improvements. So much improvement since I talked with you two days ago!

    ~Adam

  7. Patricia Hagsten Says:

    Wow! As ever, God IS good! May ALL of you be refreshed not only in sprit but in body following this ordeal. Patricia

  8. Jennifer S. :-) Says:

    Katy,
    PRAISE GOD!! PRAISE OUR MERCIFUL LORD! I am in awe of His workings. I’m so thankful that you’re home, too, Katy. I pray that you will continue to feel better!!
    Love and prayers,
    Jen :-)

  9. LInda Burk Says:

    HI all, I continue to follow the blog. You are on such an incredible journey. I lift you up in prayer daily. We send our greetings to Qavah . May you all enjoy a healthy weekend with many special moments.
    Our family is well. Julianna is preparing her nursery with pink trimmings. Happy Fall, Linda burk

  10. Sabrina Chakhachiro Says:

    Wow. I never really understood what was going on. It sounds bad. I’m glad Katy is feeling better!

  11. Jennifer Wellington Says:

    Thank you for sharing. What an encouragement these words have been. I will continue to pray for Katy.

  12. Lillian Oliveira Says:

    Dawn and all - just wanted to say that EVERYBODY was praying for Katy’s adrenal’s to recover, I shouldn’t be given undue credit - esp. since we know Jesus does what He knows is best, out of His great love. Aunt Lil

  13. Aunt Carrie Says:

    It was a beautiful day here today! We spent time cleaning up the trees that have been down since our December windstorm (we’ll have lots of firewood THIS winter.) It was a joy to be outside in creation! A wren cam to sing to us (or perhaps scold us) as we worked. This might be our last really lovely day for a while…

    As I near the end of my 24hr fasting and prayer time for Katy. I am so thankful for the work that was done, in Katy’s body, although I know it was totally wrenching physically and spiritually. I was in tears more than once while reading the blog these past weeks.

    This has been a difficult week at work as well, so forcing the focus of this day to the results of hard labor, hard decisions, and hard fought fights has been more restorative than I expected. It is an honor to participate however remotely in your struggles.

    May you have a true Sabbath day.
    Blessings,
    Aunt Carrie

  14. Doris Harriff Says:

    I wish Katy could come in contact with a doctor named David Bish. Unfortunately, he is in Alabama. He is a DO, and has had a hard time getting a practice established because MD’s won’t refer anyone to him. He is extremely compassionate, and has dealt (successfully) with at least a couple of cases that other doctors claimed were hopeless. He is extremely compassionate, and has wanted to be a doctor since he was a little boy, and his mother was sick. His parents are members of our local church here. He went to Alabama because of apparent opportunity, and the opportunity didn’t materialize. He is trusting the Lord to put him where he wants him.