Wednesday, June 23, 2010

the climb.

I'm up in our "old" room right now.  I am going to sleep here for the first time in awhile.  Joshua's mom is staying with him in ICU tonight, two floors down.  Hopefully I will have a peaceful night of rest.  I will sleep in silence without waking up to beeps, and alerts, and nurses coming in every single hour.  Luckily for Josh, he gets a pretty strong nighttime cocktail before bed - an array of powerful pills to knock him out.

I've spent the past hour listening to voicemails and reading emails.  An hour!  I had no idea how far behind I was!  Hopefully I will be able to catch up soon.  To be honest, I had know idea what day it was today until I asked our nurse!

We have already began to fill our new room with cards, drawings, and inspirational pictures sent by you. Over this past week while I was really struggling, you not only took care of Josh, you took care of me. I think we are brought to tears more by your thoughtfulness than anything else we have experienced here.  Thank you just isn't enough.

Josh's health has gradually improved, but he is not yet well enough to leave ICU.  Although it would be WONDERFUL to have him back up here in a relaxing and peaceful setting... we want to be sure that he is completely stable before we leave the 24/7 monitoring he gets now.  All of your prayers are working!  Keep up the great work!

Doctor's Updates
(This may be ridiculously boring... sorry, it's very late right now!)
Eyes - No issues!  It will just take time for the redness and floating blood to be repaired and absorbed by the body.  Until then, Josh is unable to read due to a black spot in the center of his right eye.  I read him the cards he receives.  He can not use Facebook.  Calling is better than texting, but he is often asleep.
Skin - Biopsy was unclear.  The rash is most likely a drug reaction of some sort.  It has gotten worse since in ICU - dark red splotches everywhere.  All antibiotics have been switched and we hoping to start seeing improvement.  They also started steroids today to help.
Lungs - Josh is able to take his oxygen off for a good part of the day with no problems, but usually needs it while he sleeps.  Lung function is continually improving.  This is no longer an area of concern!
Liver - So far all tests for VOD have been negative and function increased this morning.  Docs will continue to monitor very closely over the next few days.  So far, so good.
Kidneys - Josh was taken off of dialysis today with no success, he was hooked back up tonight so that they can continue to remove waste and toxins from his body.  Docs are hoping to try to switch to dialysis three times per week instead of continuous sometime soon, but there are no guaranties on how fast his kidneys will recover.  He lost almost 30 lbs of excess fluid since we arrived in ICU.  He is no longer a puff-a-lump!
Mind - Fantastic!  No more hallucinations or confusion since Saturday morning.  Thank God!!!  That was by far the scariest part of this journey for me since we arrived. 
Fever - Much better since last night. He maintained a lower fever today, but it is still not normal.
Mouth - Still full of sores that extend down into his throat.  He has "magic mouthwash" for numbing the pain.  Not sure when these will go away - they were a side effect of his aggressive chemo treatment.
Diet - Josh has been given the okay to eat and drink again!  Today he ate fairly decent after not eating food for days.  He is ecstatic to be given back another freedom.
Hair - Mostly gone.  Josh requested that the nurse shave the rest of his head this afternoon so he wouldn't have patches all over.  I videotaped the historic moment.  He still has eyebrows, but not much else.
Muscles - Very weak.  Josh stood up two times today, which was awesome.  He needs lots of assistance, but today was the first time he has been out of bed since last Thursday night.  The first time he stood, he had to sit right back down.  He became very light headed and his heart rate soared.  The second time went much better.  He was really proud!  Physical therapy will start tomorrow to begin strengthening exercises.

EVERYONE that came into our room today said that Josh looked wonderful!  Unanimous decision: We are headed in the right direction!  In addition, Josh's blood counts should start to improve this week as the new cells engraft and start doing there job.  We couldn't be more excited!

I can not wait until Josh is able to walk out of this hospital on his own two feet, knowing that he has his whole life ahead of him.  Can you imagine what that will feel like?!?

I have faith that we will get there to find out.

He who began a good work in you will carry it on to completion until the day of Christ Jesus.  Philippians 1:6

7 comments:

  1. So proud of Josh, sounds like there have been many steps in the right direction over the last couple days! I also can't wait until the day he walks out of the hospital, I think I will have a permanent smile on my face that whole day! Sending prayers and strength, Love you both! :)

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  2. This is fabulous news. I was almost in tears reading it. I can't wait until I can visit and give you both big hugs. Until then I'm wrapping you both in prayer.

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  3. I am so excited. I check everyday to hear the news about Josh. The excitement in your words is just wonderful news. Please let Josh know that Lucas and I can't wait to see you both. I knew our trip to camp Terrace Saturday was a great sign of hope and strength. We spent half the day there talking about life and the good times the boys have spent there in the woods. Can't wait to take you there Heidi. Prayers & Strength Always! Missy

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  4. I am deeply moved by your depiction of your and Josh's battle. What a spirit you have! I can only imagine the struggle, yet you remain positive. You're in my thoughts and prayers. April

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  5. Heidi - it is so good to see an update to your blog, I am constantly checking for any news.

    We include Josh in our evening prayers and we use your current blog entry as a guide as to what we ask.... and tonight I am praising God for hearing our prayers and for the strength He is sending to Josh and yourself. We will continue to pray and you just continue to trust God and believe.

    We love you!
    Pat and Judy

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  6. Heidi,
    It is great to read your updates and especially to hear good news like this post! You're both in my prayers for the upcoming days as you continue your journey!
    Wendy

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  7. Thinking of you both! Heidi thanks for the updates. please give Parker a big "Mangler" hug for me.

    Amy

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