Tuesday, October 24, 2006

On Second Thought...

After carefully reviewing Katy’s test results, the surgeon has decided not to remove her gall bladder after all. He said that it will probably recover once some of the other issues are resolved, and that the possible benefits of removing it are not high enough to justify the risks involved. So we are focusing on those other issues.

The UVA staff is making good progress on the steep HPS learning curve. One of the doctors at NIH told me today that there are probably only about 1500 confirmed HPS diagnoses in the entire world, so every time we see a new doctor he (or she) has to learn about HPS before understanding Katy’s needs. We are once again moving forward albeit slowly. Katy no longer requires full-time oxygen, and she now has a pain medication pump that lets her give herself an additional boost of pain med for breakthrough pain. No more running for the nursing staff and hoping enough time has elapsed since the last injection so that the orders will allow for another one. We are also about to try a new pain medication called lyrica that works on the nerve endings, so please pray that it will be effective and that it will not have adverse side effects. It takes about a week before the effects are known, so we will have to wait and see. Meanwhile we are waiting for the other medications to reduce the imflammation so she can start eating again.

Speaking of waiting, that’s what a lot of this struggle is about. Improvements happen so slowly, and we want results now - especially when we watch Katy struggle. We want to make things happen, and we don’t understand why it takes so long to see results. This is the time when we need to “Trust in the Lord with all your heart, and lean not on your own understanding.” (Proverbs 3:5). When we lean on our own understanding, we just get frustrated. When we trust in the Lord we can have peace, knowing that He is in control of even this.

Comments:
  1. Heather Kirkwood Says:

    Paul,
    Thanks so much for the update. There’s definately a steep learning curve with HPS. 1,500 seems kind of high actually, but I don’t doubt that there are that many cases, even more, out there. In fact, it’s not uncommon for someone to never get an accurate diagnosis because HPS is so rare. We’ve had families where one sibling gets a diagnosis, and come to find out they’ve got a brother, sister, cousin etc. whose spent a life going through all this medical trauma and was never diagnosed. There’s a saying in medical schools which generally goes something like this - when you hear hooves, don’t always assume it’s a horse. It might be a zebra. We’re the zebras! There’s learning about HPS, and then there’s learning about Katy’s specific needs related to HPS. So, I’m sure there are folks at UVa cracking the books late into the night!

    Katy,
    I’m so glad to hear they gave you a pain pump. Those things are awesome! You get to the pain faster, and well, you feel like you’ve got more control. There’s something psycological about being able to push that button - just pushing it makes you feel better! When you’re in the hospital sometimes you feel like you lose control of so many basic things - it’s nice to be able to click on your own pain med!

    Dawn,
    I’ve been thinking of you a lot lately and praying for you, Katy and your family often. I hope you’re able to get enough rest. Don’t neglect taking care of yourself and getting plenty of rest. (That’s a common problem when you’re caring for someone who’s ill. You don’t want your own immune system to get worn down from exaustion.)

    Know that everyone in the HPS community is thinking of and praying for your family daily!

  2. Jennifer :-) Says:

    Hang in there Katy. Things WILL get better because He has promised to not give us more than we can handle. He is a good God and will provide for all your needs.
    With love and prayers (from the whole family!!),
    Jen

  3. Linda Kochendarfer Says:

    Dear Paul, Dawn, and Katy,
    I go to bed thinking and praying for you and wake up doing the same. We love all of you so-o-o-o much!
    Mrs. K

  4. Sonia Says:

    Paul, Dawn and Katy,

    Still praying…praising God for the pain pump!
    Love you,
    Sonia

  5. Martha Pelish Says:

    Dear Paul,Dawn,and Katy, how I wish that we could just fast forward this part of your lives and get to the part where Katy is feeling better.But as I type this, I know that there are many people that you are encountering that you are blessing with your faith and your joy in the LORD just as you have done for me and my family. Just remember the ripple effect that GOD has. By your being a blessing in people’s lives and reflecting GOD,this in turn affects others.Dawn I can only imagine how family members who are going through a tough time are finding such comfort from you. GOD is the great comforter. I pray for you all daily. Love, Martha

  6. Karen Tillman Says:

    Paul,

    You just said a mouthful. As humans it is so hard to remember sometimes that God is in control, and what we want isn’t necessarily what is best for us as a whole. I am always amazed how those of us with HPS have survived the struggle, expecially in the beginning. I think sometimes God needs for some to suffer so that He can be glorified by those with such strength and lead others to Christ, or that is at least what I like to think anyway. That is what really keeps me going when things start taking a turn for the worst. Although, people think we are such towers, I often feel so inadequate at times, and wonder how they can think such things. To dear Katy, I am so glad that you have that pain med pump. Those things are the best invention since toilet paper. When you are better, I will have to share a very pain ridden day with you, that after the seriousness wore off, we as a family have been able to look at the humorous side of it. I am sure before this is all over, you will have plenty of stories to share with other too.
    All of you please take care of yourselves, and we will continue to be faithful in prayer!!!
    Love In Christ
    Karen Tillman

  7. Sarah Meador Says:

    Hey, Katy!

    So thankful to hear that you do not have to have another surgery right now. Praise God that you are off of the full time oxygen. I am always excited each time I read of any improvement and steps of progress toward getting better that you make. :) I’m familiar with the pain medicine pump and what a great thing that is from when my grandfather recently had surgery. What a great invention! God’s goodness is so amazing through the benefits we receive even through technology like that. :) Hang in there dear! Continuing to pray for all of you daily that God would provide strength, perseverance, and patience as we daily wait upon the Lord. I love you!

    Sarah

  8. Lisa Patterson Says:

    Dear Ones,
    When I continue to read what Katy is going through, it puts into persective the other things of the world. I don’t understand, nor do I pretend any longer to wonder why God sends stuff like this to us because it is just as painful for the loved ones as it is for the sufferer. It seem God has this valley that we must walk through and he gives us a hand once we ask for it, but we get so focused on the issues at hand that we forget to ask for that hand. We will continue to ask God to give you that hand as long as it takes. Please take care of yourselves so that Katy has that strong shoulder to lean on and keep your family together. You will come out at the other end of the valley and in the end you will think back and think “that wasn’t so bad”
    Know that we are always praying for your family and especially Katy. Lance is always asking how she is doing.
    Blessings for you
    Lisa

  9. Sandy Says:

    Prayers continue from me and all the HPS group. I was thinking of you all during worship the other day as we sang the hymn “Healer of our Every Ill.” In particular, these lines made me think of Katy…

    “In the pain and joy beholding
    how your grace is still unfolding,
    give us all your vision: God of love.”

    I hope the folks at UVa are continuing to be a blessing to you all. God’s peace.

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