Sunday & The Scoop.

{Oakes today}

It is Sunday afternoon and my little Oakes is still paralyzed and sedated. On Friday afternoon and then again this morning, his sedation was lifted and he immediately needed to be re-paralysed to let the vent do all of the work for him. Both times he fought the vent, turned bright red in the face - was clearly in distress and his numbers were just awful.

To back up a bit, On Thursday I shared that his biopsy results came back better than before. So the preliminary results were negative for rejection, and the staining for annoying Compliment #5 also came back negative - which was a first and just AMAZING news! The third part of the test was the DSA test that shows the antibodies in his blood. They too were improved, but not perfect. Despite the good news it has been impossible to get excited because there is something significant going on with Oakes that is requiring him to stay paralyzed. And the most frustrating part about all of this is that again, his doctors aren't sure what is going on.

We have heard two theories as to what might be happening. One is that this is could be a profusion issue, that his heart is not pumping blood to the body the way that it should. It could be that while his lungs were so sick, and his heart was working so hard to move blood that it is now damaged. We know that his left heart is enlarged, and it has been that way some time before transplant. It has healed a bit, it is not as large, but through an echo last week we can see that its function is still not what it should be. Because Oakes' veins going from the lungs to the heart (pre-transplant) were so narrow, it effected the pressure in which blood was moving to and from the heart. The left heart, that pumps blood to the rest of the body became enlarged as it was working so hard to move blood against the high pressure caused by those narrowed veins. Like any muscle that works really hard, it became enlarged and now doesn't contract or relax very well, which then slows down the force that blood is moved from that chamber out to the rest of Oakes' body. So his heart may not be moving blood to his lungs and other organs the way it should. This also may be the reason that his has been retaining fluids and not urinating as much - because he has damage to his kidneys. The pheresis line that we so anxiously wanted to get pulled back a few weeks ago may have had little to do with his fluid retention issues.

The other theory as to why he is struggling to breath is that this is just part of rejection. This doesn't make sense to me, because of the improved test results, and the importance that has been put on these results in the past, but still we are hearing that this may be a factor. I wish I could explain more about this theory, but I simply don't understand. I'm not getting consistent answers right now, which is completely frustrating, but pretty typical over the weekends here.

As you can imagine, Greg and I are beyond exhausted. We are pooped. It feels like life is getting harder as the months pass, not easier. Just on a day by day basis, we are both trying to do our best managing work (for Greg), our home, the needs of Isla, the needs of Oakes, and then toward the end of the list is each of us individually. For months now, we have been trying to somewhat manage our emotions. With Oakes we have experienced both extreme highs, and extreme lows, but we both try to stay somewhere in the middle no matter what is going on, that way if things change rapidly in either direction we are a bit protected. This is really hard to do, sometime it feels pointless, but other times it feels comforting and even necessary. I think that recently we let ourselves get SO extremely hopeful that we would get Oakes home within a few weeks, that this recent turn has just feet devastating. We keep asking each other with tears in our eyes, "How are we going to get him home?"

That being said, we have not lost hope, we are full of faith, we still believe in Oakes and the mighty strength within him and surrounding him. And we are still dreaming that we will get him home, and that he will continue to live his amazing life!

So the plan moving forward is this. Tomorrow Oakes will head to the Cath lab and hang out with his old friend Dr. Murphy for a bit. Dr. Murphy will be able to measure all of the pressures around Oakes' heart and lungs using a small devise that will go into one of Oakes' arteries in his groin and then snake up to his torso. Dr. Murphy will be able to determine how well the heart is working and how blood is moving around his body. This data will let us know if the theory that he may have a heart issue is true or not. If his heart looks good, then his team will move on to the theory that this is a form of rejection and will move on with radiation. Just being proactive radiation is already scheduled for Friday. We will have to take a trip back to CAM before then to make another body mold since he is bigger now (mostly retaining fluids) than he was on Aug 24th when the first mold was made. If the issue is the heart, then radiation will be canceled and we will figure out what to do with the heart.

Despite being pretty pooped, Greg and I made an attempt this weekend to have some fun with Isla. Greg has had to do some work, and I have been frantically doing laundry and small chores, but yesterday afternoon was a real treat for all of us. Around 3:30 we all headed to the hospital to not only visit Oakes but to watch hot air balloons take off from Forest Park. On Friday we came up in the evening to look down on the Balloon glow and fireworks from the SLCH rooftop garden, but yesterday there was a balloon race and we surely had the best view in town! After watching the balloons, we visited with Oakes, who looks really good. (He didn't start peeing as much as we had hoped so get got another pigtail on Friday. Since then they have pulled out nearly a liter of fluid!), and then we headed to the Webster Groves Jazzfast, just blocks from our house. We sat outside enjoying the weather, the music, some great food and each other!

We will keep you posted tomorrow on what is next for Oakes. He is currently scheduled to go tot he lab at 1:30pm, so it will hopefully be 3ish or so when he gets out.

Love to you all! XOXO

{Here are pictured from the weekend in a backwards order!}

Happy Isla at Jazzfest with her BAT shirt on (Isla has requested to be a bat for Halloween so we are getting in the mood!)

On Pappa's shoulders checking out the band.

Throwing a ball with Nurse Sarah, one of our favorites for many reasons!!

Congratulations, Nurse Ali, who got married last night. I told her Oakes would be dressed for the occasion, but that didn't quite happen. We were still thinking about you Ali!!

A serious face for Nurse Maddison as she was coloring and stickering with Isla.

Pappa and Oakes.

I love everything about this little face!!

....And check out the little "Oakes Tree" on his Nears sticker! LOVE it Nurse Emma, Thanks!!

Balloons taking off! (Gramma Jan and Grampa Bill, there is a cow balloon....MOO!)

LOVE on the rooftop.

We gladly stood towards the back of the crowd. In this pic you can see 3 IV polls, the garden was full of very special children!

"Oooooo!"

Bat-girl and her partner in crime!

A visit from Radiology. Nurse Anna helped as they measured Oakes and confirmed that his old mold will be to small for him now!

Oakes and his turtle!

A profusion scan was done of Oakes' lungs during the week to see if one side was working better than the other. You can see the outline of his lungs on the monitor and see that they are both about the same size, which means good test results!

Isla and I went to visit Oakes on Tuesday, and again, she had lots of fun hanging out with our amazing nurses. Thank you Nurses Yvonne and Patty!

She got excited telling Oakes about the fish we saw in the garden! And I could not have moved quicker to her side to cover up her nose!

Kissing his hand, over and over!

My beautiful perfect babies, together!