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Wednesday, August 31, 2011

Partial results are in and good.

This evening at rounds we learned from Dr. Farro, one of Oakes' Pulmonologist that preliminary results are in and they are good results! On a cellular level, Oakes' new lungs are much improved since the last biopsy. Dr. Farro had a big smile on his face as he shared the news with me.

To back track a day, yesterday during the biopsy, Dr. Farro stood in the hall outside of Oakes' room and shared promising news with me. Oakes weekly blood work had come in right before the biopsy showing significant decreases in all antibodies that they have been watching except for one of them. In the past these results have just shown marginal changes, some up a little, some down, but this weeks showed significant improvement.

So, tomorrow morning we should have the final results back indicating if the antibodies from the lung tissue are down or not. Dr. Farro told me that todays results looked promising. We are praying.

Tomorrow was supposed to be our first day of Radiation, but that appointment has been canceled until tomorrows results are in, and then his team will re-assess.

Not to detract from the good news, but Oakes had a rough day today. He was fighting the vent a bit, his stats dropped, he ended up with a little fever, then his blood gases got really scary so he was paralyzed. This has happened before, and usually once he is paralyzed and the vent can do its job his numbers always bounce right back, but for whatever reason this did not happen today. His number kept getting worse. It was a stressful day, but by early this evening his numbers finally looked good again.

I am praying that there is no more misbehaving in his room tonight, and that this was just a weird occurrence and not a huge set back. And of course, we are praying for amazing test results tomorrow. We are also saying some extra special prayers for Oakes' next door neighbor and girlfriend Elizabeth. She has had a string of rough days and needs a little boost. If you will, please keep Elizabeth and her sweet family in your thoughts and prayers.

Heartstrings to all of you.
I will update as soon as I hear something tomorrow.

Oakes today. Being a stud.

With his cute "All Star" socks on.

This is what a stud all star looks like.

Tuesday, August 30, 2011


The biopsy is happening today at 1:30.

Thinking Mighty thoughts.
This image was taken pre-transplant, almost two months ago before Oakes came home.

4:30 update - Everything went well during the biopsy. Visually, his airways looked better - less swollen, not as much secretions. Test results should be back by the end of the day tomorrow!

Monday, August 29, 2011

Monday's run to CAM.

My my prediction was right on, smiles on the way to CAM. Smiles and another really good day!

Greg and I got to the hospital very early this morning to catch rounds. We knew that would be our opportunity to catch all of Oakes' doctors at once and get a good understanding of what Radiation will be like, and what we should prepare for for the next 5 weeks or so. We got many questions answered and I think left rounds feeling more informed, more prepared and a bit less scared. One of the most significant things that we learned was that the progress that Oakes made at the end of last week along with over the weekend surprised everyone a bit this morning. So much so that they are going to repeat his lung biopsy before Radiation begins this week to see if there has been a big change with his antibodies that would explain his improvement. Of course, praying for amazing, miraculous news, but feeling OK with moving ahead Radiation.

Our trip to CAM was pretty easy. It took four people to get Oakes and his gear there, and went much faster and smoother that I had thought. I was under the impression that we were going through tunnels to get there, but that was not the case, we walked the same route as everyone else shuffling from Children's to CAM. I was a little nervous about that, but people were very considerate and kind of gave us the right of way. The Radiation Oncology team was great. There must have been a dozen people in the room as they mapped Oakes' lymph nodes and made his mold.

So, if everything moves forward as planned we will return to CAM on Thursday for the first treatment. Our visit will take about an hour from start to finish, but the treatment itself takes about 40 second. A 20 second X-ray on the top of Oakes' body, then an 20 second X-ray from the bottom side. The rest of the time is just set up. Then the weeks to follow we will visit CAM every Tuesday and Friday.

I did learn that Oakes will have labs drawn every afternoon, and his antibody levels are looked at weekly. The effect of the Radiation should be pretty immediate. So if the doctors see that his antibody levels take a dip, they may discontinue treatment and assume that they have had success. They can also see if his white blood count takes a dip, this would indicate that he really is wide open to all germs. I had thought that if one dipped then the other would too, but that is not the case. The ideal scenario if that Oakes' white blood cells stay relatively high, and that just his antibodies dip, in this case we would be eliminating those pesky #5's, while keeping his body healthy enough to fight any germs that he may encounter.

Thank you all for the prayers and love.
We will let you know when that next biopsy happens!

Greg rubbing his forehead on Oakes' soft and spiky short hair.

Making our way through CAM

Getting ready to start mapping those adorable little lymph nodes.

Oakes' Radiation mold. It's hard to see in this picture, but there is a place for his head to lay in, his arms, torso and legs. There were lines markered onto the mold that line up with lines drawn onto Oakes to ensure that he is always in the same position for treatment and the X-rays always target the same precise spots on his little body!

His mold sitting in front of the X-ray machine.

Walking across the bridge from CAM to Children's after a successful field trip.

All bundled up on our walk back, acorn hat and all.

Resting back in his room. Blue ink, covered by tape so it doesn't wash away. His transplant incisions is completely healed now and no longer needs a bandage. It looks amazing!

Sleeping like an angel baby!

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!

Friday, August 26, 2011

An Amazing Thursday.

Yesterday Oakes had an amazing day. Yesterday, Momma had an amazing day. This is partially because Oakes had an amazing nurse yesterday, one of our favorites, Yvonne. When I got to the room, Oakes was dressed in a Cardinals onsie, propped up in his crib looking great. He was awake and alert and happy. Shortly after I got here, Yvonne came walking into the room with her arms full of toys and goodies for Oakes. One of the items that she brought in for us was a bumbo chair, a little foam chair to help support Oakes in a sitting position. I teared up when she confidently suggested that she thought Oakes would love the chair. Sometimes, I am thinking about so much I fail to remember that Oakes is just a 5 1/2 month old baby afterall, and that he is going to have little milestones too! Thank you, Yvonne! So, we sat Oakes in his chair for about 20 minutes while we talked to him, and dangled toys, mirrors, noise makers and squeaky stuffed animals in his face. He need help supporting his head, but he did great and I think we thoroughly wore him out!

By the time Oakes was waking up, Gramma Jan, and Gramp Bill were coming up with Isla for a visit. I thought Isla would stand at the window and peak in, like she did on previous visits, but Yvonne went to get a small mask for Isla so that she could come in the room and visit with Oakes. She thought it would be good for all of us, and she was absolutely right! Isla was hesitant at first to put on all of the gear, but finally agreed to the mask, gloves and drape. Without a doubt, the 20 minutes while Oakes and Isla were together in his room, were the best 20 minutes that I have had since....I don't know when. Some time pre-transplant. Isla was completely focused on Oakes, and he was busy looking at us, tracking us and soaking up the action.

Yvonne & Oakes

Oakes sitting up!

Oakes and Momma!

Oakes with all of his visitors.

Smiling and showing off his two free hands!

Isla with her gear on!

Still gorgeous underneath it all!

She immediately wanted to hold his hand.

There is a smile under that mask!

This is Isla saying, "Oakesie!, Hi Oakesie!"

Her left hand was on his head for almost the entire time that she was in the room.

Isla kept telling me things like, "Oakesie, two eyebrows!" and "Boo-boo almost all gone!" was a serious love-fest!

We checked out some of his new toys...

.... Isla hugged Oakes!

....we read a book.

My two babies, together. Lots of happy moments!

Smiley Happy Friday.

I didn't get in to see Oakes until later in the day today, but he looks great and has been all smiles. Even the fuzzy out of focus pics are still good ones!

Hope you all have a great weekend. Prayers for our family and friends on the East coast. A huge thanks to Oakes' friends that will be 'Cropping it up' on Saturday. Prayers for a boring weekend here!

Heartstrings and Love, Becky