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Wednesday, September 21, 2011

Wednesday's Update and Details for the Cath lab.

{Oakes this morning}

So I will start with Monday's trip to the Cath lab. Like I had shared on Monday there were several objectives for the procedure on Monday. To address the clot near Oakes' liver, and to measure every pressure in and around Oakes' heart. In the Cath lab, once Dr. Murphy gains access into Oakes' arteries and veins he uses one of his sophisticated and itty bitty tools to release dye into Oakes' blood steam and then he can take what I would call an "X-ray video" of the of how Oakes' blood is moving around. When they looked at the blood flow in and around his liver it was normal. No clot present. He had been told by radiology that they clot was causing a 50% blockage, but since there was nothing there he suspected that either the Heparin took care of the clot, or that it was a mis-read by radiology. He thought that it would not have been dislodged because there would have been some kind of residual material left behind and there wasn't. So this is no longer a concern.

Next, Dr. Murphy made his way up to Oakes' heart he began measuring pressures in all of his veins, arteries, and all of the chambers of his heart. He knew that there was congestion where Oakes' left and right pulmonary arteries branched from his main pulmonary artery. and sure enough these pressures were not where they should have been. In fact most of the pressures around his heart were out of sync with each other. So first, Dr. Murphy balloon dilated that LA and RA, once that was completed he remeasured the pressures and learned that the ballooning was not effective. He suspects that either Oakes' tissue where the ballooning took place is very elastic so the ballooning just wouldn't be effective, or there are actual kinks or little folds in the arteries that wouldn't allow them to stay open. Whatever the case, he placed stints in both arteries to keep them open. Once they were placed and Dr. M measured pressures throughout the heart again, all of the pressures were a little elevated but they were now synchronized and even, which is very important. Dr. M showed us the video clips of Oakes' blood flow before stints and after and it was dramatic.

The other significant information that was gathered during the Cath procedure is that Oakes' Left ventricle is not working properly. Obviously we want to know what is going on with our guy, but this is news we absolutely did not want to hear. So Oakes has always had issues with his right heart, we have shared these details with everyone. Unfortunately there is no clear reason for why an issue has developed in the left heart. The best case would be that the trouble with the right heart is now effecting the left heart, and now that the stints are in, the entire heart can relax a bit and heal. On the other hand, this could be presenting because his heart is just so sick, and this could be a sign of heart failure. BIG sigh.

So that is that. We are in "wait and see" mode. An ultrasound of his heart will be done later this week to take a look at that left heart. Greg and I will be sitting down on Monday with Dr. Oren, the attending, Dr. Huddelston our surgeon, and Dr. Michealson, our Pulmonologist to discuss where we are and what we are looking at moving forward. This is a meeting that needs to happen but it makes me feel queasy just thinking about it.

So the update on today is not good at all. I got here shortly after 9am. Oakes was looking mighty cute, but still paralyzed and sedated. At about 10:30 am they turned off the paralytic and by 11:30 it was back on. He woke up in about forty minutes, and within the next twenty minutes his numbers looked awful. And he looked awful. He was red in the face and just struggling so hard to breath.

Dr. Duncan is the attending this week and she has two thoughts. One is that he still needs to pee, and once we get some fluids off of him and his lungs dry up a bit breathing will be easier. Her other thought is that this is just rejection presenting itself in a new way despite the antibody levels and biopsy results. She shared that everyone is frustrated like we are and they are a bit stumped. They are all leaning towards radiation now, if this is rejection than they want to treat it as soon as possible. Just to be proactive, we are scheduled to head back to CAM on Friday to have a mold made so that Oakes might get his first treatment early next week.

Needless to say the last couple of days have been rough. Some highs - getting to hold Oakes finally, but some lows -finding ourselves in this scary new place and being reminded just how sick out guy still is. Yesterday while I was holding Oakes both Dr. H came in to check on him and Dr. Michealson. Both reassured separately me that despite what is going on they have not given up on Oakes and they are still hopeful that they can get Oakes back on track.

We continue to pray.
Love you all, Becky

An image taken pre-stint. Ideally I should label this but will try to explain. The very large dark blob kind of center screen in blood trying to move through Oakes' LA and RA, you can see the RA has what looks like a fold in it, where the blood is slowing down. The gray line running from the top to bottom is Oakes' feeding tube. The short tube on the left is his Broviac, a line that is used to administer meds straight to his heart. The 4 "twist ties' that are stacked down the center are the ties that were put in to hold his chest closed post- heart surgery, and the crisscross ties in the center were from the lung transplant. The other tubes that are visible were ones in the veins for the Cath procedure.

At a slightly different angle that the above image, and this is post stints, you can not see how nice and wide and unobstructed Oakes' arteries are!

A sketch from Dr. Murphy as he was explaining what they were going to do before the procedure.


  1. And back on track he will be! We will be praying for his stability and for the clear solution to present itself to the doctors. Our arms are wrapped around you all and we're here for you for anything you need. God bless your beautiful Oakes!

  2. Ahhhh, Becky..... What the frig? I agree with chrissy; back on track soon for Oakes. Sending you a enormous hug, sending Oakes a big smooch and his doctors the information they need to get you back to where you want to be!
    Thinking of you all- xo,

  3. Becky, I don't care what the doctors say, Oakes has the strongest heart ever and I know he is going to recover soon...then, he'll be melting your heart! Praying for everyone.

  4. It definitely helped going to the Cath lab. The mighty Oakes keeps amazing me. Always in our thoughts and prayers. ((hugs))

  5. Come on, let's get off this rollercoaster! Oakes has the strength and you guys have the determination to help him use it. Prayers for the doctors to have the clarity to figure it all one out and prayers, hugs and tugs for all the Mighty Ortyls.
    Sending love!

  6. Hugs, tugs and prayers for all of you and for Oakes' heart to gain strength. Tough day to say the least. So many are supporting you all across the miles - I hope you can feel the extra tight hugs we're all sending.

  7. Tough day for you all. :( Praying for wisdom for the doctors as they navigate this latest challenge and strength and peace for your family. Sending deep, healing, calming breaths to Oakes. Heart string tugs to all of you!

  8. Prayers for Oakes and your family! He is the toughest little man that the CICU has ever known!

  9. Got to love Dr M's drawings. We have several of those as well. Oakes is in good hands we love Dr M!