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Friday, September 30, 2011

An overdue update.

{Oakes sucking his thumb minutes before he went to the OR on Monday}

It is Friday evening, and simply put, this has been a really tough week. Oakes has remained paralyzed all week. Each time they have lifted the paralytic it has been so upsetting to see him struggle, get mad and work so very hard to move air. After about twenty minutes he has been reparalyzed each time. That is, until this morning. He has been unparalyzed since about 8:30 am and is doing great. As you read on you understand how welcomed this has been.

On Monday, Oakes went to the OR for a balloon dilation with Dr. H. Everything went as planned but as I mentioned then, he needed to be paralyzed that night in order to breath. Good news about the OR but so heartbreaking to have him paralyzed.

On Tuesday we learned that Oakes has a hypoactive thyroid. They do not know why, but this could be effecting his left heart, and possibly his kidney function as well. He was started on meds that day to help his thyroid.

On Wednesday afternoon, Greg and I sat in a Care Conference with Dr. Oren, Dr. Huddelston, Dr. Michelson and Nicky, one of our nurses. Over the past week we have been visited by all of these doctors individually who kind of gave us the 'talk before the talk' so we weren't expecting any surprises in our meeting. However earlier that day some blood work and an ultrasound had been done on Oakes' kidneys and the results came back right before our meeting. Basically Oakes' kidneys have taken quite a hit in the last 2 months. They show scaring, the anatomy of the kidneys is not normal and the Kidney specialist that we spoke with said it was clear that the kidneys need more blood flow. We were told that it is likely that Oakes will need dialysis in the near future and possibly will need a kidney transplant.

This news seemed to be too much. How could Oakes, who has already pulled through so much get through this too? Greg and I were tearful, Nicky was tearful, and the doctors were definitely upset too. We were told that the longer Oakes stays in the ICU, the lower the chances are that he will get out. And with this news, the odds of getting him home are getting smaller and smaller.

As you can imagine, Greg and I have felt crushed, overwhelmed, and just so sad for our sweet boy.

Then, as he has done before, Oakes started surprising everyone. On Thursday he peed over 300ml plus extra fluid drained from his abdomen. When I got in this morning I could not believe how great he looked. No more puffy baby, just super, adorable, cute baby Oakes. Then at 8:30am his paralytic was turned off, and he was able to hold his ground all day. He got agitated a few times, but was able to calm down and his numbers stabilized. The doctors and nurses were tip-toeing around his room because EVERYONE wanted him to have a good day. And he did. Dr. Michelson even commented that Oakes has not looked this good in 2 months, and I agree. About mid-day I started talking to Dr. Oren about the kidney issue, just wanting to understand better and he quickly and excitedly shared that the amount of pee that Oakes produced in the last 24 hours changes everything. He said that all of that pee shows that his kidneys are doing much better than they had thought. He said that the kidney doctors will continue to follow Oakes, but his kidney function is not a huge concern right now, like it was days ago! I could have peed in my own pants I was so happy to hear this. Prayers for PEE answered.

So it is 8pm and I am propped up in bed typing this. I feel like I ran a marathon this week but I know this update is overdue.

This week we will pray for more pee, constant pee, unending pee. We will continue to pray for healing; healing lungs, healing heart, healing kidneys, healing thyroid. We will pray for peace for our entire family, as we are all a bit pooped. And we will pray for that special girl down the hall who received new lungs and is battling her own amazing fight right now. I can almost see the vortex in her room, but hope that we can all add to it. I have been in touch with several of our CICU friends this week and I have to ask that everyone continue to pray for these friends that have lost their sweet children; Sweet Elizabeth, Ronan, Noah and Gus.

Hug & Tugs, Becky


Booties knit by Oakes' night nurse Emma, she left them in his crib Sunday night and we found them Maonday morning.....Thank you, Emma!

Oakes coming back from the OR on Monday.

Right after the OR with his new, "I'm a Beast" NIRS sticker.

Late Monday night, We wanted Oakes to stop acting like a beast so we went with "Oakes loves Momma"

And Tuesday, a visit from Isla.

Already looking better.


I knew there was a great smile under that mask....

I promise she is holding her breath!

Reading books.

Today, sweet & calm.
LOVED seeing him move after another week of being paralyzed!

Isla under an Oak tree.

A Mighty Oak!







Our sweet girls...

video

...and our sweet but Mighty Oakes!
XOXO

9 comments:

  1. Oh Becky, Greg, Isla and Oakes!!! The Butz arms are wrapped so snuggly around you all. I think Oakes is teaching us all quite a bit about life and love. What a remarkable and wonderful turn around! We love you all so much and continue to pray for peace and PEE! And thank YOU for the prayers, love, support and Isla truths!

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  2. Hi guys,
    This update really got me thinking even more about your sweet, sweet friends and their sweet babies that are watching over your Oakes. I am thinking of them today, sending them love and hoping that their hearts are warm.
    As always, all my thoughts to all y'all are about Oakes gettig better. I am also sending some special ones to you and Greg in hopes that you both get what you need to get through it all.

    Xo
    Chris

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  3. We think that Oakes knows his Momma, Papa and big sister and he WANTS TO LIVE!!!
    What a boy.
    Love,
    Gramma And Grampa

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  4. Thanks Becky for thinking of us. You have a HUGE heart.
    What a week it has been for you. The up and downs are so draining, so I wish for you some calm easy days, and Oakes keeps saying "watch me". Such a sweet, sweet boy.

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  5. You are all amazing. We're sending love to you all and all your wonderful nurses and doctors! We love you all and miss you!
    the Broermann's

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  6. Thanks for the update - I have been thinking about Oakes all week and I can't imagine how tough this week has been for you all. I am so glad he's been making positive progress and as usual, making sure no one forgets what a little miracle he is! Prayers for pee, healthy kidneys, lungs and heart and especially for you all to bring that amazing boy home soon!

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  7. I have been thinking about you all, all week. I know this has been exhausting for you, praying for strength and peace and for more "watch me" moments from Mighty Oakes. Hoping for a quiet, uneventful weekend. Sending love from your MI family!

    Love,
    Kim

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  8. I cannot imagine having to go through such tough lows presented to you all this week. Extra tight hugs, extra big prayers for all the Ortyls and the CICU families - praying for graces, strength, and healing. And pee. Lots of it. May the Holy Spirit bring some wind to your sails as you navigate a new week.

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  9. Becky,
    Another nurse had told me about this blog and sent me a link, I saw Isla and couldn't believe I knew the family!
    I will be praying that the Lord be with your beautiful son and family, and for LOTS of pee.
    Gracie Pelsue

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