RE: Mighty Oakes Update - 5/31/12

With picture attached this time!  Sorry.

 

 

From: Greg Ortyl
Sent: Thursday, May 31, 2012 6:31 PM
To: 'becky fox ortyl'; 'gortyl@yahoo.com'
Subject: Mighty Oakes Update - 5/31/12

 

Friends and family – thank you all so, so much for all of your thoughtful texts, emails, prayers, Facebook notes, etc.  We love all of it!  I felt compelled to send an update in light of the tone of my last email, so here you go. 

 

Oakes had what we would probably call just an “okay” week.  His lung is still collapsed in spite of a couple of procedures to help it re-inflate.  It is frustrating all of us and simply does not seem fair.  However, we’re confident that Oakes is fighting as hard as ever and will come up with “something” in the next few days.  If you want more details on the last few days, please visit our blog where Becky has kept everyone current – www.babyortyl.blogspot.com.  In the meantime, I’ve attached the most precious picture ever of my children.  Every time I see it, I just lose it.  It’s the most adorable picture that I will cherish forever.

 

Much love and gratitude,

Greg, Becky, Isla P. & Mighty Oakes

www.babyortyl.blogspot.com

www.mightyoakes.org

 

 

 

 

 

Mighty Oakes Update - 5/31/12

Friends and family – thank you all so, so much for all of your thoughtful texts, emails, prayers, Facebook notes, etc.  We love all of it!  I felt compelled to send an update in light of the tone of my last email, so here you go. 

 

Oakes had what we would probably call just an “okay” week.  His lung is still collapsed in spite of a couple of procedures to help it re-inflate.  It is frustrating all of us and simply does not seem fair.  However, we’re confident that Oakes is fighting as hard as ever and will come up with “something” in the next few days.  If you want more details on the last few days, please visit our blog where Becky has kept everyone current – www.babyortyl.blogspot.com.  In the meantime, I’ve attached the most precious picture ever of my children.  Every time I see it, I just lose it.  It’s the most adorable picture that I will cherish forever.

 

Much love and gratitude,

Greg, Becky, Isla P. & Mighty Oakes

www.babyortyl.blogspot.com

www.mightyoakes.org

 

 

 

 

 

Isla's prayer

Oakes had another bronch today. The attending pulmonolgist explained that day by day Oakes' progress has been minimal, but over the last 4 or 5 days the improvement has added up to be quite noticeable, and in an attempt to step things up even more they decided they would do another bronch and place surfactant in Oakes' lower right lobe today. We all have surfactant in our lungs, but there is a possibility that Oakes' lower lobe is not making it like it should so intervening and physically adding it to his lung might help it open up. Greg and I are on board to give him the kitchen sink, and are desperately hopeful that this might help move things along. It was explained to me that the saline wash seemed to open the lung a little, just enough to get the surfactant into the lobe where hopefully it will go to work! The surfactant was placed in Oakes lower lobe around noon. After being placed we didn't move him for an hour. He was on his right side and he was sitting up a bit so that they surfactant would sort of pool in the lower lobe where we wanted it. After an hour he had an X-ray to make sure everything looked OK, and they could tell that the lung had already responded to the treatment. We left him on his back and didn't suction him for 6 hours, then flipped him over in the prone position where he will stay overnight. So now we are waiting and praying that that little lobe does some more opening overnight. He will get an X-ray around 9am, but they are already planning to repeat the bronch and surfactant treatment tomorrow. They may repeat this for up to 4 days, we will just wait and see how he responds.

I have been a teary mess today. I have just been sick with concern for my little guy.

At night Greg and I always say prayers with Isla before we we tuck her in bed. We all contribute and chime in, and usually Isla runs through a little list of names, friends and family that she asks to be blessed, but tonight she had more to say. She started with, "Bless Oakesie" then, "God, bless his lung" she raised her arms over her head and got a bit more excited saying, "let it open up like a balloon so he can come home soon", then she squealed, "so we can have a PARTY!"

Isla is always listening, taking everything in, calculating everyone and everything but in the last few weeks she has had Greg and I giggling when she speaks up and shares her own sweet independent little thoughts and ideas. No giggles tonight, just smiles with tears.

Amen, Isla, what a perfect prayer.

The latest from the Ortyls

Hello friends and family!

I wanted to follow up after Greg's post last week and share the latest as well as a handful of images. 

Oakes is doing OK. He is still paralyzed an sedated. Chest X-rays are taken every morning and so far his lung has made some slight improvements. Yesterday he had a bronch, his bronchus - his airways look open it is just his lower right lung that is so very collapsed. During the bronch, his team gave that lower lobe a saline lavage - think gargling with salt water when you have post nasal drip - the hope is that the saline breaks up the mucus that is likely making that lobe slow to open up. This morning the X-ray looked a bit more hazy than yesterday but it is likely that we just mucked stuff up with the lavage and it will look better tomorrow. We are praying that what we have seen in the last 4 or 5 days is the beginning of a classic Oakes rally. Just a little baby step here and there - slow and steady - keeping everyone on their toes and hopefully in the end blowing everyone away. That is one of the prayers at least. 

As soon as Greg's email went out last week, the supportive emails, calls, text, FB messages started rolling in, which we love. Truly, your words of support and encouragement lift us up. Thank you, friends! And of course, as we were reminded how loved we are, we were assured that the prayers were coming in too.  I am picturing the vortex moving at a pretty significant speed, with prayers, love, deep breaths, and heart strings being thrown our way from around the globe. 

The plan for the week is to keep Oakesie paralyzed and prone for about 18 hours a day. Other than that we are looking for super boring days filled with healing from the heart to the kidneys.

We will share more as the week unfolds. 

XOXO, Becky

Isla and Oakes during Mothers Day week. 

Quality time with Ena! Ena and Grandpa Dale come to visit nearly every other weekend and this was the first time Ena has seen Oakes awake since his birthday weekend in early March, and the first time she has held him in a LONG time! He looks bigger than she is. 

This was the Monday before Memorial Day. Oakesie was doing so great we got down on the floor to play. We brought in a train set from home that Oakes got for Chirstmas and he was captivated by it and Isla.

After playing with the train Isla told me that she wanted to hold Oakes. I don't know where this request came from but I'm so glad we made it happen, there were huge smailes all around.

They are just the sweetest little duo around!

Oakes awake and happy last week during his CT scan. He was smiling and waving at the nurses. For Oakes, anytime is a good time to turn on the charm. 

This past Saturday, our friend Dr. Huddleston threw out the first pitch at the Cardinals game here is St. Louis. It was Congenital Heart Defect Awareness night at the stadium, and our friends Dave and Chrissy Butz shared some pretty amazing tickets with us. Oakes wasn't there obviously, but we sent Dr. H a message before the game.

Dr. H is the first person in the line up of people in the center of this image. He has on a jersey and red cap. What an amazing honor for an amazing man! Next to Dr. H is Lena Morsch, she is an adult who has thrived despite being born with a complicated congenital heart defect. Her parents were told that she wouldn't live past the age of 5, so for us she is a symbol of hope. Lena has been following Oakes' story via the blog for some time and she reached out to me recently and shared her story with me. Not only was Lena being honored as Dr. Huddleston's oldest patient on Saturday, but Lena is one of the organizers for the CHD awareness night at the stadium and she shared with me that next year they want Oakes to be on the field for the opening ceremony! As soon as we get him up and moving we are going to have to get his physical therapist to help us with his pitch! So,wether you are a Cardinals fan or a Mighty Oakes fan, plan to be in St. Louis next year for CHD awareness night at Busch stadium! Go Cards, Go Oakes...

 Go Chuck!





One of the posters that I brought.

We spent Memorial Day with Oakes...

....painting our toes. I look forward to the day that Oakes can audibly complain and protest this happening or simply disapprove of me sharing this picture!

Greg and Isla on the way to the car.

And here is the Mighty man, on his belly covered up by a prayer blanket that was sent to us right after he was born. I have no idea who sent this to us. In the craziness that was our lives a year ago I misplaced the card that came with this blanket and I have not forgotten that I owe someone a heart felt thank you. It came from a local church, I remember that. And I remember a sweet handwritten note saying that for every knit and pearl of the blanket a prayer was said for Oakes. I am saying my own prayers that those original prayers are working and helping today. THANK YOU to the sweet unknown friend that made this for Oakes, heart strings to you!

Mighty Oakes Update

Friends and family – we hope you are enjoying a fantastic start to a long holiday weekend with your families.  It has been about six weeks since my last update.  Oakes was doing very well and was on the verge of possibly coming home.  In fact, I actually said in my email that “barring any setbacks” we might have him home in a few weeks.  Well, we had a setback and we need your prayers and thoughts as much as ever right now.

 

Shortly after my email, he had some trouble breathing and had to be moved from 7 West back to the CICU.  They discovered his airways were a bit narrowed so they scheduled a bronchial exam where they ballooned his airways.  While they were down his throat with the scope, they decided to take a biopsy of his right lung since it was about due for the every-three-months biopsy of his new, transplanted lungs.  Unfortunately, during the procedure, Oakes’ fragile little lung was punctured.  This created some issues with air building up between his lung and his ribcage, blood in his lungs and, obviously, even more difficulty breathing, particularly whenever he was aggravated.  In the early days of May, Oakes seemingly was doing awesome – he was happy, smiling, laughing, reacting super excited when he heard the words “Isla” or “mama”.  Even though we knew his right, lower lobe of his lung (the area which had been punctured in April) was partially collapsed, we assumed during those wonderful couple of weeks in May that the punctured lung was just a minor blip and that we were almost back on track to go to 7 West and get a step closer to home.  We were going so far as adding electrical outlets and re-arranging our first floor to make room for Oakes’ “bedroom”.  He wouldn’t be able to go upstairs with all of his equipment (vent, feeding tube, medicine pump, etc.), so we were adapting our living arrangements to accommodate our mighty little guy.

 

Things turned poorly about a week ago.  Oakes had a couple of fits last weekend in which he was inconsolable.  I was there for one of the fits and tried all my tricks and just could not get him to calm down and he was vigorously fighting the vent, causing severe breathing issues.  In both cases he had to receive a “shot” of paralytic so that we could get him under control and “in synch” with the vent.  This became more frequent early in the week and so the staff has been running a number of tests to try to understand better what was going on, which brings us to today.

 

We received news today that Oakes’ lower right lung is completely collapsed and looks to be irreparable (my words, not the doctors’).  It was described as just a deflated mass of lung tissue.  It was so deflated or “consolidated,” as Dr. Duncan described it, that his diaphragm had moved into the now empty space.  The doctors are trying several things this weekend in an attempt to re-inflate the lung, but at this point, Oakes has virtually no reserve air capacity to withstand anything other than a paralyzed state.  For instance, he has an infection in his left lung right now, so with a phlegmy left lung and a deflated right lung, he can’t really breathe without significant help and being paralyzed.  If he were to get upset with a collapsed lung, he’d quickly de-sat into a bad place as well.  So we have to get this lung fixed asap.

 

The doctors are targeting Tuesday to see how Oakes will respond to the various treatment efforts over the weekend.  If his lung doesn’t respond, we won’t be left with good options.  It hasn’t completely sunk in yet for me and Becky that we are all of a sudden at this point.  We keep shaking our heads and asking how this can be; it is completely surreal to us.  So we are praying like crazy that Mighty Oakes has yet another rally in him.  How much can one kiddo take?  Doesn’t he deserve a break or two here?  We’ve been in similar desperate situations before and have seen him rally, so hopefully that is what happens here.  We just would feel comforted to know that our loving friends and family know where we are and are praying and thinking good thoughts for our little turkey this weekend. 

 

In the meantime, we have had incredible progress with Mighty Oakes Heart Foundation – getting more and more publicity, having incredibly touching tributes made to Oakes, having friends raising money – lots of money – through various marathons and other events.  And we’ve been fortunate to help a few families now.  I’ll save all those details for another day, but just know that things are going great with the foundation.

 

Have a fun weekend with your family and love to you all.  A couple classic pictures of Oakes are attached.  Isla loves climbing in his crib and laying with him….but really, who doesn’t?!

 

Greg, Becky, Isla P. & Mighty Oakes

Tuesday's update

The brief update is that Oakes is peeing!

The prayers, the good vibes, heart strings and dances are working!

We played water sounds on Pandora for most of the day. And I held Oakes for a little over 2 hours, which was much needed therapy for both of us. When I picked him up his heart rate was in the 140's, his Oxygen saturation was in the 80's and his breath volumes on the vent were in the 60's. All of those numbers are just OK for Oakes. When I held him his heart rate came down to the 90's, his O2 was 100%, and his volumes went up to the 80's....all fantastic numbers. Proof that I need to hold him more! Plus, amazing nurse Ali was able to wean his Oxygen from 45 to 35 while I was holding him. All of this means we had a fantastic day today. And we plan to repeat this again tomorrow.

Thank you for all of the LOVE and support. We are blessed to the moon and back to have family and friends that are rooting for us, lifting us up, and doing little dances to help us and our little family. We LOVE you all. 

Here is Oakes lying "prone". He is on top of his boppy, and with the water sounds in his room today I really just kept thinking that he was on the CICU lazy river! 

The good thing about Oakes spending time on his belly is that I finally got a chance to really cut the hair on the back of his head, and to photograph the ever so handsome lone freckle on his back!

 I took these pictures on Saturday. Isla and Greg came up to see Oakes after soccer practice. Melt my heart....

(Oakes' temperature was a little low, so he had this little "blanket" covering him to warm him up. It was basically a little raft, with holes poked in one side and warm air blew out of it evenly distributing the warm air. Apparently being paralysed can effect the bodies ability to regulate temperature, but this is one of the first times in a long time that Oakes needed to we warmed up!)

And this was from today, while I was holding my sweet Oakes. Yes, he is #1, but we were really channeling #1!

Another step back.

Last Thursday I posted "the cutest" pictures below and on Friday morning Oakes was re paralyzed.

Just like all of the other unexpected and unwanted set backs that we have had, this is a big bummer!

Last week while Oakes was awake and moving around I could tell he was not 100% himself. I could tell he was uncomfortable. He didn't have much energy. He would play, give us that big gorgeous smile and interact with anyone that would give him a minute, but would pretty quickly become tired. I mentioned this to the Attending, that he wasn't himself and he thought that didn't seem crazy being that Oakes had been in such bad shape the last 2 weeks. Good point, I thought. Then Wednesday night I just had this feeling. This feeling that Oakes was on the verge of a crisis. I had been watching him all day and was trying to listen to what he was saying. I called the CICU at 11pm to just plant a seed in the Fellow's ear, just to unload my concerns and have another person really checking in on Oakes over night while they had a fresh earful of Dr. Momma Ortyl's concerns. Instead of the Fellow, I got the Attending. He listened, gave me his thoughts on what was going on with Oakes, then told me he thought I was tired and should go to sleep. At the time, I agreed with him. Yes, I was freaking tired and I wanted to go to bed, but I also wanted peace of mind about Oakes being in the best health. Less than 36 hours later that same Attending Doctor called me early in the morning to tell me that Oakes had hit a wall all of the sudden, his stats started dropping he was fighting the vent, he was sweaty, working hard, and as we were speaking he was reviewing a chest X ray that had just been taken and Oakes entire right lung had collapsed again. He followed that information with "I am going into his room right now to paralyze him, I will call you back soon, and I could hear him giving the verbal order for the paralytic as he hung up." My stomach turned. There is never really a good reason that someone from the hospital calls, and to hear the stern greeting of an Attending is dreaded. We were so excited that Oakes seemed to be ramping up to his old self, this like every other set back, felt devastating. Not to mention I spent a day or two beating myself up for not going crazy to get someones attention or to get someone to listen to me and help me, help Oakes.

Oakes has been stable over the weekend. They have been flipping him from his belly to his back regularly. He spends 18 hours a day on his belly, then 6 on his back. On Saturday he had a CT scan and his team was able to identify infection in his lung tissue. This was likely caused by everything that happened after the biopsy, but he is now on antibiotics and is responding to them. His numbers have improved a bit, but we are back to the place where the paralytics are slowing all of his organs down and Oakes isn't peeing like we need him to. He is grossly positive, like a liter and a half of extra fluid on board. So, we are praying for pee. If he pees a bunch, then there will be room for his lungs to heal and work properly, and once that happens, his heart will get a break, and then his kidneys. We are in the damn vicious cycle that starts with pee. I am grateful that it is nothing worse, I am happy this is not his airway, this is not rejection or some crazy complication, but I honestly would like to drop kick that vicious cycle out of my life and Oakes'.

So friend, if you are so inclined, please say a prayer for pee, #1, piddle, puddle, wee, piss, potty, make.....whatever you may call it. We just need pee and we need lots of it. If you are feeling tired of praying with words and want to take it to the next level, I think a pee-pee dance will be just as powerful and helpful. Isla and I just did one, no doubt God got the picture!

So our weeks should look like this: Tomorrow - play CDs of the sounds of waterfalls and Oakes pees like crazy. Once the fluids are out, then we can start to wean and tweak his vent, then hopefully by the end of the week we can lift the paralysis and see that cutest smile again. 

I will keep you posted on our progress. 

Hugs for the prayers that I know are coming our way.

XO, Becky

Skoga River Waterfalls, Iceland

He has rallied!

I don't know how he does it, really!? Oakes is doing great. I am LOVING seeing those blue eyes, and that crazy, big, happy smile.

Looks like several weeks here in the CICU to watch Oakes while his lung heals, then we will talk about heading back to 7West. No one wants to take him to the OR and look at anything or do anything. He has been improving everyday, we are weaning meds and the vent and we are getting smiles from all of the doctors and therapist. Big sign of relief.

XOXO
Becky

Oakes snoozing when I got to his room. Didn't think he could get cuter....

....but then he woke up!!

Really, he is THE cutest and happiest kid ever.