An overdue update.

{Oakes sucking his thumb minutes before he went to the OR on Monday}

It is Friday evening, and simply put, this has been a really tough week. Oakes has remained paralyzed all week. Each time they have lifted the paralytic it has been so upsetting to see him struggle, get mad and work so very hard to move air. After about twenty minutes he has been reparalyzed each time. That is, until this morning. He has been unparalyzed since about 8:30 am and is doing great. As you read on you understand how welcomed this has been.

On Monday, Oakes went to the OR for a balloon dilation with Dr. H. Everything went as planned but as I mentioned then, he needed to be paralyzed that night in order to breath. Good news about the OR but so heartbreaking to have him paralyzed.

On Tuesday we learned that Oakes has a hypoactive thyroid. They do not know why, but this could be effecting his left heart, and possibly his kidney function as well. He was started on meds that day to help his thyroid.

On Wednesday afternoon, Greg and I sat in a Care Conference with Dr. Oren, Dr. Huddelston, Dr. Michelson and Nicky, one of our nurses. Over the past week we have been visited by all of these doctors individually who kind of gave us the 'talk before the talk' so we weren't expecting any surprises in our meeting. However earlier that day some blood work and an ultrasound had been done on Oakes' kidneys and the results came back right before our meeting. Basically Oakes' kidneys have taken quite a hit in the last 2 months. They show scaring, the anatomy of the kidneys is not normal and the Kidney specialist that we spoke with said it was clear that the kidneys need more blood flow. We were told that it is likely that Oakes will need dialysis in the near future and possibly will need a kidney transplant.

This news seemed to be too much. How could Oakes, who has already pulled through so much get through this too? Greg and I were tearful, Nicky was tearful, and the doctors were definitely upset too. We were told that the longer Oakes stays in the ICU, the lower the chances are that he will get out. And with this news, the odds of getting him home are getting smaller and smaller.

As you can imagine, Greg and I have felt crushed, overwhelmed, and just so sad for our sweet boy.

Then, as he has done before, Oakes started surprising everyone. On Thursday he peed over 300ml plus extra fluid drained from his abdomen. When I got in this morning I could not believe how great he looked. No more puffy baby, just super, adorable, cute baby Oakes. Then at 8:30am his paralytic was turned off, and he was able to hold his ground all day. He got agitated a few times, but was able to calm down and his numbers stabilized. The doctors and nurses were tip-toeing around his room because EVERYONE wanted him to have a good day. And he did. Dr. Michelson even commented that Oakes has not looked this good in 2 months, and I agree. About mid-day I started talking to Dr. Oren about the kidney issue, just wanting to understand better and he quickly and excitedly shared that the amount of pee that Oakes produced in the last 24 hours changes everything. He said that all of that pee shows that his kidneys are doing much better than they had thought. He said that the kidney doctors will continue to follow Oakes, but his kidney function is not a huge concern right now, like it was days ago! I could have peed in my own pants I was so happy to hear this. Prayers for PEE answered.

So it is 8pm and I am propped up in bed typing this. I feel like I ran a marathon this week but I know this update is overdue.

This week we will pray for more pee, constant pee, unending pee. We will continue to pray for healing; healing lungs, healing heart, healing kidneys, healing thyroid. We will pray for peace for our entire family, as we are all a bit pooped. And we will pray for that special girl down the hall who received new lungs and is battling her own amazing fight right now. I can almost see the vortex in her room, but hope that we can all add to it. I have been in touch with several of our CICU friends this week and I have to ask that everyone continue to pray for these friends that have lost their sweet children; Sweet Elizabeth, Ronan, Noah and Gus.

Hug & Tugs, Becky

Booties knit by Oakes' night nurse Emma, she left them in his crib Sunday night and we found them Maonday morning.....Thank you, Emma!

Oakes coming back from the OR on Monday.

Right after the OR with his new, "I'm a Beast" NIRS sticker.

Late Monday night, We wanted Oakes to stop acting like a beast so we went with "Oakes loves Momma"

And Tuesday, a visit from Isla.

Already looking better.

I knew there was a great smile under that mask....

I promise she is holding her breath!

Reading books.

Today, sweet & calm.
LOVED seeing him move after another week of being paralyzed!

Isla under an Oak tree.

A Mighty Oak!

Our sweet girls...

...and our sweet but Mighty Oakes!

XOXO

Tuesday.

Overnight Oakes was reparalyzed. His breathing became very labored and he was fighting the vent. We are all hoping that this is just a minor set back after yesterdays procedure. He will remain paralyzed today to let him rest. Thanks for all of the prayers. Beck

Monday.

Oakes went down to the OR for his ballon dilation less than an hour ago, and we just got the call that he is coming back up.

Hoping for an uneventful rest of the day for our little acorn and a easy meeting for Greg and I around 3pm.

5:20 Update: Our meeting has been pushed back to Wednesday. There is a girl in room 6 that needed everyone attention for most of the day today, so no one could get away to chat with us, which we are totally fine with. Prayers going to room 6 tonight.

Everyone that was supposed to be in the meeting swung by to say hello and give me a talk before the talk. Overall everything sounded positive. Oakes still has a few unknowns, he is so far from the norm, and is continuing to cause these brainiacs to scratch their heads and shrug their shoulders, but the fact that he has remained unparalyzed all weekend is HUGE. Dr. Michelson said something like, "Last week this meeting would have gone in a totally different direction, but now that Oakes is holding his own again, we have new options to talk about"....Thank god for new options! Thank god for the change that can happen in one day. If anyone is keeping track of all of the miracles that this boy has had in his life, count this one too!

Hugs to all of Oakes friend, and thank you for the prayers.....they continue to work!

XO, Becky

Swinging on Sunday

Yay, to normal baby stuff!

Saturday's Update

Guess who came came out of his paralytic over 24 hours ago and has been doing unbelievably well? You know it, its our Mighty Amazing Oakes!!

So Oakes has been paralyzed for weeks now and every time his team has tried to lift his paralytic, within about an hour he is struggling, his numbers look awful and I have been asking, "When are you going to turn it back on?" because it is miserable to watch him work so hard and get so upset. Yesterday morning they turned it off, and as the hours passed Greg and I, as well as several members of his team that were here yesterday were in a bit of shock. Actually at rounds at the end of the day, Dr. Egtastady said that if he could he would have done a back flip. The rest of the week was pretty crummy, so this has felt unbelievably amazing!

Ena came in town yesterday. Here she is with her Ortyl grand babies!

Ena, Isla & two baby pumpkins!

The Ortyl family....

...minus masks!

Sweet Isla with Oakesie!

Getting to hold my awake baby and just loving it!

The whole clan this morning!

Praying for an uneventful weekend without paralytic. Monday, Oakes will go to the OR with Dr. Huddelston for another balloon dilation. This week they discovered that now both airways, both bronchi, have narrowed so we will go back to have both left and right bronchi dilated. We also learned this week that our amazing Dr. Huddelston is leaving St. Louis Children's Hospital in a few weeks. I have felt devastated, but am wrapping my head around the changes that are about occur. We will spend time on Monday at the end of the day with several of Oakes Dr's discussing where we are and what lies ahead.

Again, praying for a boring weekend. Praying for a successful trip to the OR on Monday, and praying for strength for Greg and I as we go into this meeting on Monday.

We are also praying for Isla and Oakes' Great great grandmother Moore who passed away last night. We will also pray for Grandpa Dale and all of the Moore family as they say good-bye to such a strong and amazing woman. We love you, Grandpa Dale!

An Update to the update: Not Only is Oakes awake, but he has been giving me huge smiles!! LOOOOOVE it!

September 22: 2 months with new lungs!

Momma's arms and a maskless smooch to celebrate! All is well in the world.

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.

Tuesday

I know I owe details from the Cath lab, but I just don't have it in me tonight. I am pooped and my pillow is calling. I can assure you that Oakes is doing well. He is still paralysed and sedated, his paralytic will be lifted tomorrow and we are hopeful that he wakes up feeling comfortable and able to breath easier. Today his vent was weaned a bit, his numbers looked good, and the best part of the day was almost a two hour stretch where I got to hold him! I am proud that he did so well in the Cath lab, thrilled that he is a heavy baby now, and hopeful beyond words that we are getting our guy back on track.

Love to you all! XOXO Becky

Status Update #5.

Oakes is back, everyone that was here to help get his settled in just cleared out of the room, and he is now getting set up for a comfy and boring night! Greg and I had a nice chat with Dr. M. No surprises, things went well. I will share more details tomorrow. For now I need to smooch on my sleeping beauty and then get home for the night.

Love to all of you for the supportive messages, emails, texts, prayers, good vibes, and love, love, love....we could feel all of the good stuff today. XO Becky

Status #4.

Oakesie still doing great. Procedure is complete and has been successful. Dr. M ended up putting stints in both arteries Greg and I are anxious to talk to Dr. Murphy to get more details when they return Oakes to his room (in about 30 minutes-ish). We are excited to see our guy!

Status Update #3.

Another call from Shannon. Oakes still doing great. They are now ballooning his right pulmonary artery. Once this is complete they will remeasure pressures and may opt to go back and stint both arteries to keep them open.

Status Update #2.

We just got a call from fabulous Nurse Shannon. Oakes is doing great. His left pulmonary artery has been ballooned once, but they are now going to balloon it again with a larger balloon.

Status update.

{Our wise little Oakes owl this morning}

So, our Oakes has been in the Cath lab for about an hour and a half now and we are waiting for an update any minute now.

Before they took him we had some quality time together. We talked in depth about what was going to happen today, and I gave him about 12 suggestions on where to go today during the Cath. While we talked, I gave him a foot massage, hand massage and played with his hair. His paralytic was wearing off a bit and to my delight his numbers remained strong, he did not fight the vent and he was even responding to me. His eyes never opened but he would move his toes, or a finger, even shrug his shoulders. Right before he left he even twitched his nose and he and kind of, sort of puckered his lips a bit. It could have possibly been more of a twitch, but I am going with a pucker, as in, "I love you Mom, your fantastic, I'll see you in a bit, MMmm-wha!"

So this morning when I got here, our friend Dr. Joshua Murphy, the Cath doc came into the room to chat a bit. I got more info from him about what is going on today than anyone doctor this weekend. And a lot is planned. To start, on Saturday they did an ultrasound and detected a "significant blood clot" in Oakes' liver. He was started on Heparin to begin to try to break that down, but part of today's procedure would be to try to break that up even further without dislodging the clot.

Second, Dr. Murphy shared that from the echo done last week he is able to see that there is again congestion in Oakes' heart in the same place that they saw congestion after his first open heart surgery. To remind you, Oakes was born without a pulmonary artery or pulmonary valve. In his first surgery, he was given a donor valve and a pulmonary artery was created from existing tissue. Pretty quickly after that surgery we knew he would need another, because we could see that where his narrow native tissue met the larger donor tissue there was some congestion. So in his second surgery, he was given a new pulmonary valve (the first was aneurysmal and full of clot material) and his tissue was expanded to meet the donor tissue more precisely and to effectively correct the congestion issue. So, now, Dr. M can see that there is calcification and scar tissue at this sight where both surgeries have occurred. Dr. M's plan is to first gather data. Measure pressures all around the heart. He will enter Oakes through his groin again, but also is planning on gaining access through is jugular vein in Oakes' neck. Once data is gathered he will consult with Dr. H and Dr. Balser, the other Cath lab dude, and they will decide if they should do anything else today, meaning balloon the troubled areas open, or even place stints in them. He guessed that they would be ballooning in the least. He also shared that the procedure would take nearly 4 hours.

So, Greg and I are sitting tight. We did just get the first update that they have gained access and are gathering numbers. So far, so good.

More updates when we have them.

Love to all of our friends.

Becky and Greg.