Sunday, August 22, 2010

A step in the right direction

I find myself reluctant to blog when I do not have good news to report, so I apologize for leaving you in the dark. Then I remind myself that this blog was intended to be an honest portrayal of the blessings and challenges of the chromosomally enhanced life and this situation is the challenge of all challenges.
 
On Friday afternoon, Doctor Perspicacity quickly became Dr. Doom and Gloom as he accosted Travis and I with a very bleak prognosis and told us to prepare ourselves for the worst.  Our hearts instantly shattered.  Saturday morning, Travis' parents arrived and Travis' brother rushed to the airport so he could be here to meet Josie.  It was an agonizing, tear-filled day. 

We did, however, encounter a couple of new doctors who demonstrated that they were nowhere near ready to give up on our sweet Josie.  We were also blessed with Nurse Krista, who embodies optimism and truly believes in Josie's ability to pull through. 
Thank God for Nurse Krista!

I woke up this morning with a good feeling about this day.  We arrived at the hospital to find that Josie's saturations were slightly higher on slightly less oxygen.  That was a step in the right direction; a much needed sign that we are turning a corner! 

This afternoon, Josie briefly woke up and was content.  Her saturations remained high and she smiled at us.  My father-in-law captured this picture with his cell phone:

The doctors still have not discovered the source of the problem.  Josie does have pulmonary hypertension.  Her CAT Scan showed "gunk" in her right lung.  We cannot identify the "gunk" without doing a dangerous biopsy and even that may not tell us anything.  She is currently on antibiotics, pain medications, sedatives, Nitric Oxide, Oxygen, and Lasix to try to drain some of the fluid that has accumulated around her lungs. 

We remain hopeful as we wait.  We pray that each day we are greeted with the subtle improvement Josie demonstrated today.  I anxiously await the day I can blog to tell you that she is off the ventilator...and that she's out of the PICU...and that she gets to go home...and comes back to punch Dr. Doom & Gloom in the face (Travis' idea, not mine).  With all the love, support, and prayers that surround our sweet baby, we know she will recover.  We've got BIG plans for this kiddo! 

On a lighter note, I'd like to congratulate Leanne for winning a silver medal in her Special Olympics Bowling tournament this weekend.  She bowled an impressive 101! 
You go girl!

33 comments:

  1. Poor Josie! I'm sorry she's having to go through this. And you too! We'll be praying for an accurate diagnosis and a quick recovery.

    Congratulations on your silver medal Leanne!

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  2. Praying here in Michigan for your little one. And Congratulations LeAnne on your silver medal. That's awesome!
    Amy

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  3. Praying for you!!! Never lose hope. Anything is possible.

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  4. Praying that little Josie continues to improve every day and that you get to write that blog post. I'd say I hope you get to punch Dr. Doom and Gloom in the face but I don't want to encourage violence. Oh your little girl is so beautiful and we're praying she kicks this PH in the behind!

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  5. following along and PRAYING!

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  6. I am praying for you and can't wait to hear how she is doing. I hope you and your husband are getting some rest!

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  7. Come on baby Josie, you can do it! You need to stop by our blog and our friend Bella's blog. Hers is arabella.turpinfamily.cc. We both have kids with severe PH that weren't supposed to survive. Jax is now 4 and Bella is 23 months. You can email to at laceyrugg@hotmail.com. We've been on this trek before, and would love to chat!

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  8. Thanks for the update, just gives us more specifics to pray for sweet Josie & you both!


    Yeah Leanne, you definitely out bowl me by a long shot! Congratulations.

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  9. Praying nonstop. We're in agreement with Krista and aren't ready to throw in the towel anytime soon...

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  10. We are praying for you and for Josie. Both the kids are praying too. This is the first time I have seen the blog. Amazing!
    Keep us updated on your little angel.

    Christina & Family

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  11. Jesus told us in Matthew 17:19-20 "I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, `Move from here to there' and it will move. Nothing will be impossible for you." Faith as small as a mustard seed sounds a little like hope to me, and that's a good start. Praying for your healthy return home Josie.

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  12. Continuing to pray for you & your sweet Josie.

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  13. I'm praying for Josie and for your family! You are well loved by our Father, and HE has a plan for this sweetie!

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  14. Lots of hugs, love, and support coming your way! xoxo

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  15. We are lifting your sweet Josie up in prayer!

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  16. She looks really good! Praying things keep stepping in the right direction!

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  17. When our daughter was born very sick last August we also had some amazing nurses. God definitely blesses those ICU nurses! Anyways, one of them told us that they love working with babies because babies are so incredibly strong and seem to heal and recover quicker than adults. I will continue to pray for Josies strong heart xxx

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  18. Sending prayers your way!

    (from lc and jace's auntie whit)

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  19. Your daughter is a beauty! I pray that she keeps stepping in the right direction.

    My son Ralphie has PH and it just SUCKS. We were given poor prognoses on several occasions. He is three years old now and doing great. Feel free to email me @ nancefamily8@cox.net.

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  20. praying for your beautiful little girl!

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  21. Adding more prayers for Josie! i just might come back with J to punch Dr.Doom and Gloom!Seriously! Does he know how tough our kids are!

    And congrats to Leanne!!!! That's awesome!

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  22. Keep believing. We'll keep praying.

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  23. Sending love and optimism Josie's way...

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  24. Sending prayers filled with hope and healing from California.

    Dr.Doom and Gloom must not know that there is magic in that extra chromosome.Absolute magic.

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  25. Just wanted to let you know that I made it over here from Patti's blog and we are praying for you and your little girl...sending lots of hugs your way...

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  26. We are sending our prayers from TX. Hang in there, stay positive and keep hopeful. The Lord works in mysterious ways and he has a special plan for your Josie...

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  27. We are thinking of you and your sweet Josie.

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  28. We continue to pray for Josie! Blessings to all of you.

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  29. God is making you one strong MAMA! I am so proud of you! I will be coming to you for advice.

    In our prayers, Holly

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  30. Praying for easy breaths for sweet Josie and strength for you dear family. You all are in our hearts.

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  31. That is such a precious photo that your father-in-law captured! I'm so glad that today was a slightly better day and I will continue to pray for all of you, but especially sweet little Josie!

    Congrats Aunt Leanne! It's a rare day when I break 100!

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  32. I'll be praying for Josie! So happy that He sent you Nurse Krista!

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  33. Praying Psalm 60:12 over your little sweetie! Dr. Doom and Gloom better watch out... lol

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