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Friday, August 19, 2011

Final test results in.

First things first, more smiles. Smiles in his sleep. Love it!

Ok, so rounds just passed and Dr. Doctor just shared more detailed biopsy results with me. On a cellular level Oakes is not rejecting his amazing little lungs. Initially after transplant, there were about three different diagnoses to his lungs. All of those issues are now gone, meaning his new lungs are not "sick", they are still healing and have made significant progress since the last bronch. All good news.

On a Hemo level, or dealing with Oakes' blood, there is one specific protein that Dr. Doctor said is attaching to Oakes' lungs that should not be. He assured me that "there is still some powerful weaponry" to use on that pestering little protein, and the team is currently discussing their next move. So, not completely out of the woods, not great news, but not bad news.

Two days ago while getting set up for the Bronch, the drain to Oakes' left lung partially came out. The stitches holding it in had just loosened and it gently started sliding out. It was completely removed then, and this evening Dr. Hudd will insert a new drain on that side. There has also been talk about permanently pulling back the line that is used for pheresis. Oakes is still so puffy and one theory as to why this is, is that the pheresis line (that goes directly into his heart) is causing a little interference with blood flow in the heart, which is then causing him to retain fluids. So one theory is that if they pull that line back, he won't retain fluids, and by letting go of fluids it will alleviate pressure on his diaphragm, which will alleviate pressure on his lungs and then he may be able to be extubated sooner. However, some of the Dr's on his team think the Pheresis line should stay, and we should continue pheresing him. This debate has been going on for over a week and no one seems to have a definite answer. It is slightly frustrating that there isn't protocol for Oakes, but I know that this complex little guy is not a textbook kind of patient and I have all of the confidence in his team. I am just looking forward to continuing to move in this same path forward.

Before Dr. Doctor stepped away I asked him if he would say that Oakes is definitely out of rejection. He said, "yes and no." He shared that ultimatly the test results from today are good, but that we still have work to do. He said looking back on the week, Oakes has definitely had a good one. He has continued to make progress and Dr. Doctor remains hopeful.

Feeling extremely thankful, extremely proud, extremely hopeful.
Praying for another boring weekend.
Sending little tiny Oakes smiles out to all of you and giving you a little tug on your heartstring!
XO, Becky


  1. Hi Becky,
    Woot Woot! As usual Oakes has mapped his own course and is right on track. I'm so happy that his lungs are healing, and I'm guessing that he is just getting started.
    I think I'm going to send Oakes some toothpaste, his little smiles are so sweet.
    Sending you good thoughts and love,
    Chris s

  2. Whew... it's tough to be the trailblazer! Wouldn't it be nice if things were black and white sometimes? But Oakes is in the best hands possible, getting the best care from a brilliant team of doctors who have brought him so far already! Looking froward to more good news. Keep fighting, mighty Oakes!

  3. Mighty that he is. What a fighter. Loving those smiles. I bet that it did your heart good to see :-)
    Have an awesome boring weekend.

  4. Great smiles! Good news! Keep it up Oakes - you can kick those proteins to the curb - we know it!
    Love Jake, Morghan, Hayden (3yrs) and Ozzie (15mo)

  5. Thanks for the smiles, and the good news. Those darn proteins! They stink. So now, in Oakes' slow and steady fashion, we will get those to let go of their hold. Hang in there with the up and down news. We are all still sending deep breaths, and believe in healing. Here's to another boring week.