Thursday, December 15, 2011

1 Step Forward...2 Steps Back...

Patrick has had three strong days this week. He's been speaking more, responding well to physical therapists, and enjoying the strength that comes with his new steroids, which are meant to shrink any inflammation or potential lymphoma that may linger in his body. His sister, JoAnn, arrived on Monday and Patrick has really enjoyed her company (and we've really appreciated her new conversation topics and energy to stay at NIH late into the evenings!)  I finally returned to the hospital today, after three days away--his three stronger days, go figure--miserably battling bronchitis at home.  I'm glad I returned, as Patrick seemed to really perk up when I walked in. BUT it had been a really hard night for him, and I could instantly tell he wasn't doing too well.

He didn't get much sleep last night, as his heartbeat had begun racing quickly, so the staff struggled all night to get him to relax, and help him to sleep with appropriate meds. He was finally sleepy and relaxed this morning, as the sleep meds had finally set in, but he looked gaunt to me, as if he'd lost 15 pounds since I left him there on Sunday. He looked really sick, and I've got to admit that it was really hard to see him like that, while still trying to rally enough cheer and optimism to remind him that all of this is just temporary, and tomorrow is going to be a better day. His short sentences of yesterday became hard-to-decipher grunts that were meant to be words today.

The drs don't have answers as to what is happening, and they are trying their hardest to get him back to his pre-seizure level of awareness, strength and health. He has a feeding tube in his nose that constantly pumps high-caloric Boost drinks into his belly, and we're working hard to feed him soft food that will taste good and fill him up. He needs to be physically strong in order to beat this thing, and admittedly, feeding him and helping him relax when he becomes agitated is about all we can do, while the drs do their thing.

I cried the whole way home from the hospital this evening, praying that God would take this awful cancer thing (and it's mysterious complications!) away from Patrick; that God would heal him and make him strong again. It's hard to believe that he will, after days like today, but I do hope that God will be merciful to us. I would really love to see my sweet husband sipping on champagne at festive Christmas parties, or enjoying the pretty lights on our fake little and borrowed Christmas tree at our (temporary) home.  Instead, he sips a milkshake from a spoon we hold to his mouth, and we together watch the colorful little lights flicker on the medical monitors sitting beside his bed.

Angels from near and far are hanging all around us, thanks to the creative idea of some dear friends. We have paper cut-outs, marker-colored and sticker-covered ones, beautiful sparkly ones, ceramic ones from Lithuania, delicate figurines, and the list goes on and on. It's been such a blessing to receive so many poignant reminders that in this yucky season of our lives, our friends and family--like angels--surround us night and day. In this season of Advent, when we wait for the coming and glorious birth of our Savior, I am reminded that angels came to Mary and promised her the birth of something new, along with the needed support for what she would need to handle such a challenge.  I, too, wait for the coming of our Savior, and wait eagerly for the miraculous work of our incarnate God to bring something new out of our dark, hard-trodden days at NIH.

God, have mercy, I pray.  Come heal Patrick; bring light and healing to him this night.  Allow him to sleep peacefully, regain his strength, and be ready for the long road to recovery. Just as you came to Mary in the quiet cattle stall in Bethlehem, so many years ago, come to Patrick tonight, in his quiet ICU room, and heal him, be with him, and give him faith that you still do have a hope and future for him...for us.



  2. Continuing to pray . . . Lord have mercy, Christ have mercy. Amen.

  3. Strengthen Patrick, oh God. Shower him with your love, healing and mercy. May this difficult time be just a moment in a long journey that he will continue to live, filled with many joyful and happy times to come.

  4. My husband and I are praying morning and night for you. Our church is praying as well. May you feel God's Almighty loving arms holding you up and carrying you through. - Wendy Lane

  5. I pray right alongside of you in agreement with your prayer and also ask God to help the doctors determine what is causing all of these problems. We pray that you will direct them to the answer Lord so that they may treat Patrick with new knowledge and wisdom. Amen

  6. O God of heavenly powers, by the might of your command you drive away from our bodies all sickness and infirmity. Be present in your goodness with your servant Patrick that his weakness may be banished and his strength restored; and that his health being renewed, he may bless your holy Name through Jesus Christ our Lord.

  7. Our prayers continue Julie. This might be obvious, and it also might be unhelpful, but I will risk asking if you have tried playing my music in the hospital? Particularly the blue Portraits CD. Patrick said that this music was helpful during his first bout, and it has been known to help calm agitation. Just a thought. Prayers for you continue too!
    Jeff Bjorck

  8. Julie,

    We continue to stand with you and in the face of adversity, see the healing work of Christ that has already been completed in the spirit realm. We pray that we will very soon see this in the natural realm as Patrick's physical body heals.

    Blessings to you all!

    Anthony & Nicci

  9. Hi Julie. This is Courtney from your tues am small group at Church at Charlotte. I have followed your blog and have not stopped praying for Patrick and for you. Thank you for sharing your heart and allowing God to use you through this. I am praying for healing and wisdom for the doctors. I am praying you will feel Jesus arms around you and his presence. I am praying for endurance and strength for you as I can't even imagine how weary you are. I will continue to lift all of you up.
    Love, Courtney


Thanks for your prayers!