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Sunday, August 28, 2011

This last week and the next 5+ to come.

Hello friends.
We are overdue for a big update and we have lots to share today.

First, we had our first official Might Oakes Heart Foundation fundraiser last night and it was a huge success. I think that a good time was had by all, many creative projects were started and completed, meals were shared, prizes distributed, and lots of love for Oakes and our family was expressed. I proudly shared all of the details of the day with Oakes just minutes ago! A humongous THANK YOU for all of the work that you did. Another heart felt thank you to everyone that participated and contributed, the Foundation thanks you, The Ortyls thank you, and mostly Mighty Oakes thanks you!

So, this week had extreme highs and lows for us. I will start with the lows and end with the highs. As we shared with you about two weeks ago we were told that Oakes was not rejecting his lungs on a cellular level, but there was still that one protein that was attaching itself to his lungs, which ultimately meant he was still rejecting on a humoral level. At the time, Dr. Doctor said that there was still heavy weaponry that could be used if needed. On Monday, we found out that we will indeed need that heavy weaponry, and that weaponry is Radiation.

That pesky protein attaching to Oakes' beautiful new lungs is called Compliment #5, and there are 2 ways to get rid of it. One was a medication that would kill Compliment #5, it is risky and the results were only going to be short term. The second option is Radiation. It also involves scary risks, but the best case scenario is great. So our journey continues.

For the next 5 weeks, Oakes will receive radiation in the CAM (Center for Advanced Medicine) which is an adjoining medical building to SLCH. Radiation aside, this will be a major undertaking. Oakes in his crib, his vent, his pole of medications, and all of his tubes and tape will go a big field trip through the halls of Children's to a tunnel over to CAM, then up to the Radiation Oncology offices for his treatments. He will be accompanied by his nurse for the day, a Fellow from the CICU, an Anesthesiologist, several other techs to assist with the move, and finally, a parent. Walking there will take nearly forty-five minutes and our visits will last from 1-2 hours. Our first trip is tomorrow. No radiation tomorrow, kind of a preliminary visit. While we are there, they will make a mold of Oakes' body, that he will lay in for each treatment. The mold will ensure that he is laying in the same position for each visit. Then they will map out his lymph nodes, and that data will be entered into the machine that is programed for Oakes' treatments. So on ever visit after that, Oakes will be placed in his mold, and this machine will slowly but meticulously use radiation in the form of a laser to target Oakes' lymph nodes. The blessing of this treatment is also the curse - Oakes' immune system will be destroyed. In the best scenario once Oakes' immune system is down it will start to rebuild itself, his body will recognize his new lungs as native tissue, and Compliment #5 and any other antibody like it will be long gone. The scary part is that any little virus, bacteria, cootie or bug, big or small, can and will be a significant threat to Oakes' general health. And a significant long term side effect with this radiation is melanoma. Skin cancer. Deep breath.

So, moving on to the good news and the positive outlook. Oakes has made some huge strides this week. He has peed out a huge amount of fluids that he has been hanging onto for weeks. He looks amazing. He has been waking up, he has been alert, and most thrilling to witness is that he has been happy. And if he is happy, he must be feeling pretty good! Thank you, God! Oakes has come off of one diuretic completely, and one has gone from a constant drip to just a daily dose. His vent has been weaned to zero, which means that he is freely taking breaths on his own. He still is intubated and is getting pressure support. So the vent is letting his breath on his own, but when he initiates a breath, the vent helps to keep his lungs inflated. So, still some work to do to get off of the vent, but everyone is happy with his progress this week. Just this morning, the drains from around Oakes' lungs were removed. Those lines have not been draining much fluid, which means his lungs are greatly healed. He currently only has that little pig tail drain in his abdomen that was inserted a few weeks ago. The arterial line that was in Oakes' left arm, turning his arm into a club was also removed, so both hands and both feet are now free of IV lines. Oakes has earned a little trust from his nurses and he is getting a lot more slack when it comes to restraining his hands. Yesterday was the first day that he actually got his thumb in his mouth. He wasn't quite sucking on it, just kind of playing with it, but he was a happy dude!

The other good news we shared with you already. Oakes has had several "normal" activities this week, sitting was one of them, and a visit from his sister was another.

We hope that Oakes current condition - being so strong, and stable and happy is just what he needs to tear through the next 5 weeks. This feels so similar to the circumstances around the transplant. Right before transplant Oakes was stable and he was strong, enough so that he was sent home. In hind sight, I don't know how he could have recovered if he went into that huge surgery not being his best.

I found myself in church today feeling so thankful for this week. As a whole, it has been amazing. Oakes smiles and happy energy is healing to me. It fills me up, it and replenishes my hope. Witnessing Oakes sitting, and just being a baby was also amazing. I felt so proud of him. He continues to show me how to slow down, to see all of the little miracles around me and appreciate them. Even more than sitting, I love, love, loved having a date with Oakes and Isla. Isla was so amazing with him. She too, was in the moment. Someone pointed out that Isla is Mighty as well. Mighty sweet, mighty caring, and to be so excited and focused on Oakes despite the hospital, the floor, the machines, the beeps, the gear, the tubes and tape, she too is mighty brave, mighty strong. I am desperately praying for more weeks like this. I am praying that we have the best possible outcome from radiation. I am picturing peace in Oakes' immune system. No more #5. I am picturing heartstrings wrapping and weaving themselves around Oakes' crib tomorrow, creating a protective cocoon for our trip to CAM. I am imagining his room filled with light and love. Prayers and goodness swirling around in that vortex. His doorway patrolled by angels catching germs and cooties that get a little too close to his room or try to enter. I am now imagining an additional line entering Oakes' little body, a line that has been there from day #1, but this line that doesn't carry medication from the pharmacy or milk from Momma, this line pumps in medication in the form of love and hope and miracles. This essential line is delivering what all of us are sending to Oakes, our hopes for him, our comforting words, our deep breaths, all of the good stuff that is fueling him. I am praying that in true Oakes fashion he holds steady through these next 5+ weeks. That he feels our love, that he knows we are with him, and that he can continue to slowly pull himself out of this....again.

I am predicting reassuring smiles from Oakes on tomorrows trip to CAM, and I will post an update once we gather more info from the newest team that is weighting in on our Might Oakes.

Love and heartstings to all of you!


  1. Hi becky,
    Yay for a successful crop! I'm sure that there are going to be many more to come and I am going to be in the front row :)
    So, your post today has left me feeling all kinds of things. I love seeing your sweet babies together! I am so happy for the positive steps that Oakes has taken. He never ceases to amaze me. I know that the next step in Oakes fight is scary. I know that when you walk through that tunnel oakes and his "posse" are going to feel a blast of love. I know that any dirty little germ that tries to weasel it's way in will have to get through a powerful wall of our energy, prayers and love.
    As always, xo

  2. So glad to hear the crop went well! The Mighty Oakes Heart Foundation will help so many families for so many years to come!

    Sending love and energy to all of you as you face this latest challenge. Praying for an uneventful trip to the CAM today!

  3. If there is anyone in this world who can get through this unscathed, it's the Mighty Oakes! Lots of love coming your way on your field trip to CAM!

  4. Prayers, love, medicine, and science working together. I will pray and love him and all of you.

  5. I think of Oakes daily. Now I get to picture him going through a tunnel of love. :)

    All our love,
    Colleen, Billy, Liam and Ciara

  6. Extra thoughts and prayers as Oakes enters this new chapter in his healing... I hope the test run went well. There isn't a day that goes by without thinking of him.

  7. I think you guys are some pretty mighty parents too. All 4 of you amaze me. You are all in my thoughts daily and I will send all my energy and love your way tomorrow...and every day. Xo

  8. Sending lots of positive healing thoughts, vibes and prayers to well as the Mighty Ortyl's! Your entire family truly amazes me. If anyone can defeat #5, Mighty Oakes can! xoxoxo