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Tuesday, August 9, 2011


Invisible stings are great, but I know you all want to hear about the latest, so here it is. Yesterday was a big day for our little Oakes. Pheresis in the morning, two different doses of chemo followed by a dose of IVIG. The chemo basically is eliminating his antibodies, to stop or reverse the rejection and the IVIG is the introduction of good antibodies, also intended to halt rejection. An aggressive day, but essential treatments. He tolerated everything just fine until later in the evening where is blood pressure dropped significantly. It took quite a bit of tweaking before his blood pressure was controlled. Even then his body temperature was not consistent. His limbs were cold but torso warm, and his pulses were weak in his limbs, both a sign that he was not circulating blood properly. His urine output also dipped. Currently he is stable and resting like the sweet little guy that he is. Greg and I both got here this morning and were met by Dr. Gazit, this weeks Attending and maybe our favorite Attending. He recapped the evening for us and the plan for the day. Oakes was to receive an Echo to take a look at his heart and make sure that it is working just fine. (That has since happened and both upper chambers look good) Other than that the plan for the day was to rest after yesterdays crazy day. Before we lost Dr.Gazit's attention I asked him, what I called an impossible question. I asked if he could paint a picture of what we might anticipate the upcoming weeks to look like. He shared that blood work was being done on Oakes today to see if he is responding to all of the aggressive medicines that he is on. If he is responding, then they will be able to formulate a plan to move forward, involving extubation and getting us home in a handful of weeks. If he is not responding, then we will discuss other possible treatments. We should get test results tomorrow.

As of now, Oakes looks great. He has been awake on and off today. I got to hold him for maybe 10 minutes as his nurse, Miranda changed his bedding - thanks to a huge, poopie, blow-out diaper! I trimmed his fingernails after that, and tucked him in with soft blankies from home. I think he is a bit pooped from yesterdays treatments and I am too.

Praying, praying, praying for good news.


  1. Come on Mighty Oakes! You can do this!! Praying super, super hard for some good results. Love this little guy!!!

  2. Love and prayers to Oakes and all the Ortyl family as you wait!!!! Praying so hard for all of you!!!
    Jennie and Emily

  3. OAKESIE! OAKSIE! OAKSIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  4. So many prayers coming your way!!!!

  5. Prayers and love being sent from High Ridge and Steelville, Mo. Fight, Oakes, fight!

  6. Waiting for the good test results to come in! You can do it Oakes!

  7. oakes is running through our hearts, minds, lungs and spirits. sending so much love his way, xo,
    the leeds fam

  8. Hi Becky, not sure if you would remember me from Christ the King Days, but I came across your FB through Erin DiMartino or jumping from FB to FB and found you.

    I wanted you to know that we are praying for your little Oakes and my word what Heavenly Father has planned for your little one and how he has already worked through him.

    I read your blog, tonight, from the start to end and cannot believe how, you said it, slow and steady he has been which wins the race. He is definitely a cutie.

    I will be adding him to our Temple roll tomorrow, so that he can have so many more praying for him and sending good vibes to him.

    Big time ((((HUGS)))) for you and your family!!! Stay strong!

    ~Susan Conner (Shipley)