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Monday, April 30, 2012

Oakesie is awake!!

We are so thankful, Oakes is awake and he seems to be doing great.

Yesterday his paralytic was lifted and he was giving us little smiles as he was opening his eyes, it was perfection!

Greg spent lots of time with him yesterday and Isla and I spent time with him today so he has seen us all.

His numbers all look great, his meds and vent are being weaned, but his upper right lung seems to be struggling. It has been collapsed for days, but his X-ray this morning looked worse than the day before. We can see fluid (likely blood, or clotted old blood) in his lung so there is talk about doing a little laparoscopic surgery to remove the fluid. No one is freaking about the fluid or the lung right now, but if this isn't resolved then an injured lung could be an enormous, gigantic issue for us.

So, while Oakes' team figures that out, we intend to love all over Oakes, participate in as many therapies as we can, get him up and moving, talk to him, giggle with him and let him know that we are excited to get back on track!

Three Ortyls +  one little chair = heaven. 

Our other exciting news to share is that our little Isla P is three. We loved the twos and are hoping the threes are just as exciting, joyful and entertaining for all of us! Happy Birthday, Isla!
The last day of being two!

Saturday, April 28, 2012

No news.

No news has been no news. 

I went in Friday hoping that I would see Oakes' eyes for real, but he threw a fit around 7am - his heart rate went up, he had a fever, rash and they were suctioning out all kind of nasty stuff from him airway so we abandoned the plan to wake him up. He clearly wasn't ready to wake up and was just sending us a message. 

In an attempt to help him out and move some of the nasty stuff around, the staff made him "prone"- they flipped him onto his belly. They have been alternating his position since Friday and it seems to be helping. 

We are talking about waking him up tomorrow. 
Mighty love to all of our friends!



Oakes prone looks like Super Oakes.

Super Oakes with a puffy face.

If you have never seen Greg sleeping, this is pretty much what it looks like.
The "pros" to having a paralyzed child make up a short list, but there are a few!

Wednesday, April 25, 2012

Wednesday.

Still paralyzed. Poop.

So last night Oakes had a little set back. He had a fever, a little rash, his heart rate went up into the 170's (it is usually in the low 110's) so they went backwards with the vent overnight. He settled out and was stable quickly but they left the vent alone. When I got in this morning they told me they were going to lift the paralytic to just check on him, but as soon as we saw him open his eyes we would re-paralyze him. BIG poop.

Around 10 am they lifted his paralytic. It usually takes about and hour to wake up which was about the case today. He was squirming around just doing a little jig as he was waking up. Since he hadn't made it to the lower vent setting the doctors didn't think he would be comfortable waking up from the paralytic but since the paralytic is a "neuro drug" they wanted to turn it off and see that he was responding appropriately, moving around and opening his eyes. This would confirm that his brain was in good shape. So when the paralytic is turned off it is like (in my words) little electrical messages are slowly shot out from Oakes' brain to his muscles. Randomly a toe twitches, then an finger and the longer he is off of the paralytic the quicker the messages fire and the more movement he has. Legs kick, his tongue and facial muscles move, then eventually he coughs and opens his eyes. So today, Monica, Oakes' amazingly sweet nurse and I stood at his crib side just talking to him, holding his hands, just watching and waiting for him to wake up for the first hour. At an hour out, he was pretty active but no eyes. Then around two hours out we just saw slivers of eyes, no smiles just a few grimaces. He was trying to get his thumb in is mouth though. Right at the two hour mark Oakes was physically working harder to breath, his numbers looked good, but he was starting to show signs of struggle so Monica had to turn the paralytic back on. I think Monica was just as bummed as I was to have to do it, so she thoughtfully gave me a few minute warning that it was being turned back on. She stepped out of the room for a minute to tell the docs that she was going to turn the paralytic back on and when she did I gently lifted Oakes eyelids so he could see me. I knew he could hear me, I knew he knew I was there, I just wanted him to see me, to see my smile and know everything was OK. And selfishly, I wanted to see him. I wanted to see his baby blues. I have just been missing him so much.

Not the news I had hoped to share, but it was still a good day. The good news from the day was that Oakes did so well when they lifted the paralytic. He did not show signs of pain. He was not mad. He was not in distress, did not bare down, hold his breath, turn blue or any of the scary stuff that Monica and I were prepared for today. Doctors did not come running into his room. He was pleasant and sweet, and trying so hard to keep up with the vent. He was actually taking really big breaths on his own, a great sign. Monica suctioned his airways several times and pulled up lots of clean secretions. We did not see blood or anything that was even blood tinged coming from his airway. Another great sign. Then after he dozed back off, his vent was weaned a bit and he has been holding steady all day.

So we now wait a bit and try again in a day or two.
I will post those baby blue eyes as soon as I see them!
XOXO, Becky

Tuesday, April 24, 2012

An update on the cutest boy.

Another quick update: Oakes had another great day today! He kept things steady and boring. His vent has been weaned to 16, but Dr Gazit wants to get it to 15 overnight then lift the paralytic in the morning. I am so excited about seeing his eyes tomorrow, and hopfully a smile.


Thank you for all of the continued love and prayers, once again, they are working!

Monday, April 23, 2012

Another smidge.

We were flooded with emails, voice mails, texts, Facebook comments all day not to mention friendly smiles and kind words at Isla's school from so many people telling us that they were thinking about us, praying for us, sending healing thoughts and heartstrings and we have been touched by each and every one of you that has reached out to us. 

I had to follow up on yesterdays post and share that again today we have moved another smidge in the right direction. O has been stable all day, the most exciting thing that happened today was that he pooped up to his shoulders, a skill that not one person on the floor really appreciates! Oakes is still tolerating his feeds, he peed a bunch over night and then again today, his chest tube drained very little and they made a tiny wean on the vent which he has tolerated. One of the vent settings has been set on 19, and we can lift that paralytic once it gets to 16. So today they went to 18 and O is holding his own. Maybe tomorrow we will get to 17?

Again, thanks for all of the LOVE. Becky

He just looks better today and his new NIRS sticker says it all, "Something Special!"

He is still as cute as can be!

Oakes wasn't the only one that had a good day. Ena is in town and she and Isla were busy in the garden today!

Sunday, April 22, 2012

An unexpected turn of events for Oakes

Hello everyone.

Just a quick update on Oakes. Unfortunately he has been struggling, has found himself back in the CICU, paralyzed, sedated and in a bit of trouble.

Last week, on Monday  I had called his 7West nurse around 7:30 am and got a good report on him. Then around 9am as I was pulling into the SLCH parking garage his nurse called to tell me that he had been transferred back to the CICU. Apparently he started working a bit harder to breath, he was retracting, he had a bit of a fever and his we requiring a little more oxygen. At the time this seemed silly to me. Since we have been in 7West he has had little "spells", but really, going back to the CI? I was sure I could talk some sense into someone. When I walked into the unit several nurses shook there heads when they saw me, as to say "WHAT are you doing here?!" and I quickly heard that as they were rolling him down the hall he was waving and all smiles. Sure enough, when I got to his room - our old room oddly enough, he was awake, pink, happy, smiling, just looking great. I thought for sure we would be back in 7West that night. We were supposed to spend Monday bouncing around on lower floors. Oakes had been scheduled to have an echo, and profusion scan, and another test that I can't remember right now, but we were 2 weeks from our discharge date and these test were going to be done before we were going to be sent home. Someone called these our 50,000 mile check-up and I did not want to miss that check-up!

When I found Dr. Oren he had already talked to Dr. Egthasady and a trip to the OR for a bronch, biopsy and lavage had already been scheduled for the following day. When Oren saw Oakes that morning he said his retracting was significant and he was an ugly shade of gray. When I heard this I agreed, OR in the morning, no 7West tonight. I convinced myself that as we were all thinking about getting Oakes home, this OR trip would be good. No one has seen Oakes' airways since December and we were due for a biopsy to check for rejection.

Tuesday OR tip seemed to be uneventful. Oakes' airways were small, but not too small. Dr. E thought they looked better that he expected. He ballooned both sides with a 4mm balloon. He started with a 2.5mm and worked his way up. Oakes' trachea looked stenosed so he ballooned that as well. He biopsied both lungs and then did a wash of the lungs too - all part of the plan. However, we found out pretty quickly that evening that the biopsy on Oakes' right lung actually left a hole in his lung and his lung was pooling with blood, and air was escaping into the space between his lung and chest cavity. Not good. Not good at all.

That tiny hole is his right lung has been creating all kinds of unwanted issues. Oakes remained paralyzed over night and on Tuesday when the paralytic was turned off, Oakes woke up mad, coughed once and filled his trach with fresh red blood. I can only imagine that having your lung full of blood is what it feels like to be drowning.  Oakes was awake and freaking out, he was not moving air, again turning an ugly color far from pink, his nurse called for a doctor and respiratory therapist and they had him paralyzed in minutes with the vent breathing for him. He remains paralyzed still with no real plans to lift the paralytic anytime soon. This week also included a rash and soaring temperatures again, the diagnosis of three bugs growing from his trach cultures all treatable with antibiotics, some time on the arctic sun, an ice bath, and emergency bedside bronch, a dozen chest X-rays, a CT scan of his chest and abdomen, having a chest tube placed to allow the blood and air to drain from his chest cavity (over 100ml of blood had drained by Thursday), a blood transfusion, Oakes got platelets several times, his has been getting insulin and had consults with the infectious disease team as well as the kidney and liver doctors. This week was the opposite of boring.

So the biopsy left a hole in Oakes' right lung. A complication that can happen. It is on the consent form that we have signed over and over before.  The complications are these:  the blood thinner and steroids that Oakes is on daily prevents him from healing quickly. Not to mention he is Oakes, he does nothing quickly. So the hole is just there and there is blood in his lung. The vent is now on crazy high settings to compensate for the fact that Oakes is 1. Paralyzed and 2. has a hole in his lung. And this has created a pneumothorax outside of Oakes lung. A pocket of air that has collected that is actually putting pressure on Oakes lung, collapsing it and and inhibiting its ability to function properly. The vent settings are so high in fact that it is safe to say they are damaging the left lung. And the pressures in his lungs are now causing injury to his heart. It is not working properly so he is not circulating blood properly. His kidneys are not getting enough oxygen and so they are lagging big time and the doctors, up until today have been worried about his liver.

Yesterday was bad. I had a gut wrenching conversation with Dr. Gazit about what a bad place we are in. How Oakes organs won't be able to tolerate this much longer and we need to start weaning the vent.  I just cried all day. And for the first time since Oakes birth I felt truly mad. Mad at the doctors, mad at the world, mad that one more thing was going wrong. And mad, when I envisioned weeks of the desktop calender just flipping by as we were taking these huge steps backwards. F-bomb.

I woke up today feeling a little better. Oakes had had a stable night. No middle of the night calls. No crazy reports from his nurse. My plan was to go in and love on Oakes as much as I could. When times have gotten hard, I have always felt better when I have made sure I have spent quality time with Oakes. So I marched in and requested to hold my one year old, paralyzed, 25 pound handsome beast of a son. I was told he wasn't stable enough and that I could not hold him. But that didn't slow me down. Oakes got a foot massage, I wiped him down, I changed his socks and bib. I played with his hair for a long time while I talked to him, then I put the side of his crib down and leaned into the crib so that my arms were around him. I wasn't holding him but we were as close as we were going to get without disturbing him, and that was fine with me. While I loved on him, his heart rate dropped ten points, so I know it was quality time for him too.

The update from Gazit toward the middle of the day was that Oakes is still very sick. He still is requiring lots of support, but they were able to wean the vent a tiny amount so that his lungs aren't taking such a beating. He has been peeing a bit more, so his kidney are responding. Test results came back that said his liver is uninjured, and they have started feeds which he is tolerating. Gazit thought that Oakes had plateaued after days of moving in the wrong direction, and said that the weans on the vent might indicate that he has improved a smidge. And we will take a smidge. I recognize a smidge. A smidge tells me that Oakes is in there, doing his thing, slowly but steadily. Thank goodness. The other important piece of information that I have to mention is that per the biopsy, Oakes' lungs are not rejecting. Deep breath.

So as this new weeks starts, please think about your friend Oakes. Please send him some healing thoughts, some love and heart strings. Please envision that little hole in his lung healing up perfectly, all unwanted fluid and air leaving his body, and the positive domino effect taking place with his lungs, then heart, then kidneys and liver. Envision lots of pee flowing. Envision him feeling comfortable, taking deep breaths on his own, not being scared or mad, waking up from the paralytic happy and refreshed. Envions us bored beyond belief and being bumped off of the floor. This change of course is going to add months to our stay, but we are hopeful that we will be back on track very soon.

I will keep you all posted as the week unfolds.
Much love to you,
Becky

ps: If you are on Facebook, you can sometimes get quick updates on Oakes through the Mighty Oakes Heart Foundation Page before the more detailed posts show up here.


Oakes right before we went down to the OR


Our old view looking East, only now its Spring.
























Now that his profusion is an issue again,  the NIRS sticker has returned, which means the billboard is back! I went with a classic today.
Oakes being iced down. There is a bag on his head and on both side.
They placed Oakes' chest tube in his room. He was all covered up when I came in to see him 
afterwards.



Isla and Oakes spending some time together, watching Strawberry Shortcake. No doubt, Oakes was happy to get a break from annoying Dora.

Wednesday, April 11, 2012

Running For Oakes & His Friends....

Guest blogger here today folks. Becky is busy uploading the 800 pictures we took today of Oakes in his Cardinals jersey and hat at the hospital garden.....

I had briefly mentioned this in the email I sent out the other day, but wanted to pay it more respect today with its own post. A very good friend of mine, Kirby Koettker, is running a half marathon on Sunday morning at 7am. He has been training for months and months and has decided to raise money for Mighty Oakes Heart Foundation. It is a really incredibly humbling thing for me to have a buddy do this for my son and our foundation and I am posting more information below.

The net of it is he is donating $10 for every minute under 2 hours and 30 minutes that he runs the half marathon in. He has been running it around 2 hours and 15 minutes. I am matching his donation to MOHF and will donate $10 for every minute under 2:30 he finishes.

We are asking for either flat-rate donations ($1 or $2 or $5 or whatever you are comfortable with) or "per minute" donations as Kirby and I have done above.

Here is more information on the Go! St. Louis organization and why Kirby felt compelled to help raise money for MOHF:

My name is Eric “Kirby” Koettker and I, like many of you, am a friend of the Ortyl family. I met Greg in high school and was lucky enough to play baseball with him from the time I was 14 through my senior year in college, along the way of course I met Becky and soon found out what all of you know, what a wonderful person she truly is. However, the bond that I share with each of you that read this short message is this…we think and pray for Oakes Ortyl, his big sister Isla and the success of the Mighty Oakes Heart Foundation (M.O.H.F.) each and every day. I marvel, like you all, at the absolute commitment and steadfast dedication that Becky and Greg have shown not only to Mighty Oakes, but to all that have surrounded them in this ordeal, including other families who have gone or are going through the same or worse situations. I like many of you, have never met Oakes Ortyl, but through the blogs, messages and e-mails that Becky and Greg unselfishly provide I feel like I have met him; I know that someday I will met Oakes and be inspired all over again.

In the meantime, I wanted to provide anyone who is interested to help raise a few bucks for the M.O.H.F. I will be running in the “GO” ½ marathon in downtown ST. LOUIS on Sunday April 15 (Greg’s B-Day by the way). I have been training for this race for many months and it has been a huge physical and mental challenge for me. I do not mind saying that Oakes and his family are on my mind much of the time. I think about how the “struggle” that I am going through in my training and how it pales in comparison to what the “Mighty” one has faced.

So here is the sales pitch…I am going to donate $10 to the foundation for every minute I finish under 2 hrs. and 30 min. I wanted to invite all of you that may so be inclined to pledge an amount (however big or small) to the same accord. I will tell you that my goal is to finish around 2 hours, so you can have an idea what your total pledge amount might be. Please just e-mail or contact Greg or Becky back as to what you may like to do (even if is a fixed amount) and after the race (Sunday evening) I will send my finishing time to Greg so he can post it to the group.

I know this is rather informal, but if we can raise a few dollars and at the same time heighten our thoughts and prayers for Oakes, I think it is worth it.

Thank you in advance for your generosity.

Eric “Kirby” Koettker


www.gostlouis.org

The GO! St. Louis Family Fitness Weekend, held in April each year, continues to be our signature event, attracting over 25,000 participants annually. Family Fitness Weekend features events and races for people of all ages and fitness abilities. The event is Missouri’s largest competitive fitness event and includes a marathon, half marathon, marathon relay, 5K run/walk, children’s fun runs and a mature mile. The Family Fitness Weekend has become a national model for other running organizations and communities, looking to inspire residents to make community wellness a priority. The 2012 event will be held on April 14 & 15

Our Mission

GO! St. Louis, a local non-profit organization, encourages individuals and families in the St. Louis region to adopt a healthy and active lifestyle year round. The organization accomplishes this through community collaborations, school based programming and the creation of new and fun fitness events.

The GO! St. Louis Family Fitness Weekend, held in April each year, continues to be our signature event, attracting over 23,000 participants from 47 states and 12 countries in 2010. The GO! St. Louis Family Fitness Weekend features 10 different races for all ages and fitness abilities. The event is Missouri’s largest competitive fitness event and includes a marathon, half marathon, marathon relay, 5K run/walk, children’s fun runs and a mature mile. The Family Fitness Weekend has become a national model for other running organizations and communities, looking to inspire residents to make community wellness a priority.

In addition to the annual Family Fitness Weekend, the innovative GO! St. Louis Read, Right & Run Marathon program for students is in its tenth year of inspiring children to read 26 books, right the community with 26 good deeds and run 26.6 miles in six months. During the current school year the program will be offered in more than 180 schools in the St. Louis region.

Monday, April 9, 2012

Mighty Oakes Update

Friends and family, good afternoon.  I hope you are all doing great and are all happy and healthy.  It is crazy to say this, but it has been almost five and a half MONTHS since my last email update on 10/30/11.  I made the mistake, I think, of assuming most of you were going to the blog to keep updated, but I’ve found out lately that’s not the case as many people were not aware of the latest with the Oakes.  It’s totally my fault and I swear I have started this email five separate times and just haven’t finished it.  It seems like years ago since last October and so, so, so much has happened since then, so I’ll jump right to it in my preferred bulletized way!  If you’ve kept up with the blog, a lot of this might be old news.

 

·         Mighty Oakes Heart Foundation.  We had our inaugural Planting A Seed dinner-auction on November 10th and 11th here in St. Louis.  It was a phenomenal success, mostly due to Ellen Moriarty’s leadership and dedication and her army of volunteer helpers.  We had 175 attendees to the dinner-auction, we had 31 Very Important Donors (VIDs) and raised over $110k (!!!!) to help families coping with congenital heart defects.  Yes, it was an amazing night, one of the most amazing, magical nights of our lives.  Becky spoke to the crowd and gave a peek to her future in public speaking J.  For most in attendance, her speech was the highlight of the night.  She told the story of Oakes and how the foundation came to be and what we wanted it to grow into.  She handled it with poise, character, emotion, sensitivity and amazing courage.  We procrastinated endlessly in sending out the Thank You cards.  I don’t even remember when they eventually went out, but it was a huge burden off of our shoulders when we put on the last stamp.  Needless to say, we cannot thank everyone enough for their participation and support.  We haven’t convinced Ellen to lead the event again this coming Fall, but we’re working on it!

o   Pizza-Wine Dinner.  A friend of ours who runs some pizza restaurants called Dewey’s Pizza decided to have the proceeds from their annual fundraiser go to MOHF in late January.  We were able to raise $6,000 at the sold-out event and left me trying to figure out how I can find a job which consists of attending fundraiser dinners 7 nights a week!  Special thanks to Adam Lee from Siduri Wines, who came in from Napa and totally ROCKED his job as emcee of the event, and four local restaurateurs/head chefs made specialty pizzas for everyone.  It was a blast and got some publicity on one of the morning news shows here in St. Louis and an article in a foodie magazine as well - http://www.feaststl.com/online-exclusives/the-feed/article_996d9a5e-2cdc-11e1-8745-001a4bcf6878.html.  Dewey’s is also donating a portion of their house wines through the summer…produced, of course, by Siduri Wines!  Thank you Dewey’s and Siduri Wines (www.siduri.com).

o   T-Shirts.  We had some MOHF t-shirts made and have sold over 300 of them!  Three of our four orders have sold out within days.  Email us if you want one, they’re only $15.  May need to order more to fulfill the next group of orders.

o    Billiken Basketball Game.  We had about 75 MOHF supporters in attendance to a St. Louis University basketball game.  Our charity was given free tickets, everyone wore Mighty Oakes shirts and we were recognized during the game.

o   *NEW* Fundraiser This Weekend!  My good buddy, Kirby Koettker, is doing a half marathon on Sunday (my bday).  He’s donating $10 for every minute under 2 hr & 30 minutes he runs this in.  He’s been running them around 2:10 or so and has dedicated his training to Oakes and Mighty Oakes Heart Foundation.  He is looking for pledges (either per minute under 2:30 or a flat donation) and will donate all of his earnings to MOHF!  He crafted the note below, meant to be shared with you all:

§  My name is Eric “Kirby” Koettker and I, like many of you, am a friend of the Ortyl family. I met Greg in high school and was lucky enough to play baseball with him from the time I was 14 through my senior year in college, along the way of course I met Becky and soon found out what all of you know, what a wonderful person she truly is. However, the bond that I share with each of you that read this short message is this…we think and pray for Oakes Ortyl, his big sister Isla and the success of the Mighty Oakes Heart Foundation (M.O.H.F.) each and every day. I marvel, like you all, at the absolute commitment and steadfast dedication that Becky and Greg have shown not only to Mighty Oakes, but to all that have surrounded them in this ordeal, including other families who have gone or are going through the same or worse situations. I like many of you, have never met Oakes Ortyl, but through the blogs, messages and e-mails that Becky and Greg unselfishly provide I feel like I have met him; I know that someday I will met Oakes and be inspired all over again.

 

In the meantime, I wanted to provide anyone who is interested to help raise a few bucks for the M.O.H.F. I will be running in the “GO” ½ marathon in downtown ST. LOUIS on Sunday April 15 (Greg’s B-Day by the way). I have been training for this race for many months and it has been a huge physical and mental challenge for me. I do not mind saying that Oakes and his family are on my mind much of the time. I think about how the “struggle” that I am going through in my training and how it pales in comparison to what the “Mighty” one has faced. 

 

So here is the sales pitch…I am going to donate $10 to the foundation for every minute I finish under 2 hrs. and 30 min. I wanted to invite all of you that may so be inclined to pledge an amount (however big or small) to the same accord. I will tell you that my goal is to finish around 2 hours, so you can have an idea what your total pledge amount might be. Please just e-mail or contact Greg or Becky back as to what you may like to do (even if is a fixed amount) and after the race (Sunday evening) I will send my finishing time to Greg so he can post it to the group.

 

I know this is rather informal, but if we can raise a few dollars and at the same time heighten our thoughts and prayers for Oakes, I think it is worth it.

 

Thank you in advance for your generosity.

 

Eric “Kirby” Koettker

·         Where Is All The Money Going?

o   Good question!  The truth is most of it remains in the MOHF bank account.  We have, on a very small level, helped two families who we have met at Children’s hospital.  One, a great family from Wichita, KS, who was traveling back and forth for their son.  Dad and mom were both working and students and, oh by the way, had their only child in a Cardiac ICU room several hours away.  It was very tough on them so we helped with some transportation costs.  We also helped a family from Tulsa with some expenditures they had associated with traveling to St. Louis.  Also, within the next week or two, we are going to be using some of the dinner/auction funds to treat the hospital staff to weekly goodies.  The staff at Children’s has been amazing and there’s no way we can ever thank them.  The job they do is difficult and has to be emotionally (not to mention physically) draining and they have played such a huge role in helping us keep our sanity and we know they do the same for so many other families.

o   As we get more organized (read: bring on more help!), we will be re-doubling our efforts to continue to identify families with heart defect children struggling to deal with the reality of their situation.  This will get easier for us when Oakes gets home and our free time is not spent at the hospital.

·         Oakes’ Health.  In general, has had a good six months.  Several issues remain, which include:

o   Cardiac and Kidney function and fluid balance. 

§  Good news – Oakes was weaned completely off of milrinone in late January.  Milrinone is a heart medicine that is seemingly used with all CICU patients.  It is a huge achievement for his heart to be working well enough that it does not need milrinone.  Some heart patients go home on milrinone and stay on it for years.  Huge news!

§  Bad news – For most of the end of 2011 and very early 2012, there was still not enough perfusion (delivery of blood) to Oakes’ kidneys.  This is causing the kidneys to be injured.  For a while, it was estimated that Oakes’ kidneys are operating at less than 50%.  For a few days, late last year, Oakes was put on peritoneal dialysis.  Going on dialysis was scary, but it was what he needed at the time.  It tremendously helped his kidney function, so much so that they decided to stop the dialysis.  Since then, there has been a lot of tinkering and tweaking with Oakes’ medications trying to find the right “fluid balance” – peeing enough to get off excess fluid, but not too much to dry him out. 

§  The other big issue with too much fluid is that it puts tremendous pressure on his airways, which obviously causes him to struggle to breath.  Every few weeks we seem to have a situation where he gets too much fluid and it sets him back a day or two, but we’re a lot further along today than 3-4 months ago when it was happening every day.

§  Beyond the perfusion issue, there is a theory that the cadaver conduit valve which was inserted back in May 2011 may have some leaking issues.  They are running tests to monitor this.  This is not terribly unexpected, but no one wants this issue to worsen as that will likely involve another open-heart surgery.

o   His Airways (Bronchus).

§  As some of you may recall going back 8 or 9 months now, Oakes, along with his congenital heart defect, has had stenosis or narrowing of his pulmonary arteries (fixed by stents) and pulmonary veins (fixed by a lung transplant).  Then later last year, in the fall timeframe, we discovered that Oakes was suffering from bronchial stenosis or the narrowing of his little airways that go to the lungs.  Normal stents were not a great option because they were only a temporary solution as they could not be removed once he outgrew them, which was inevitable within just a few months time. 

§  Late in the year, the idea of biodegradable stents was brought to our attention.  Long story short, we had received approval from the FDA (since they were not FDA-approved) and we had Children’s Hospital approve the surgery and even had our health insurance approve the coverage.  We ordered biodegradable stents manufactured in the Czech Republic and began to schedule an Austrian doctor to travel to St. Louis to insert them into Oakes’ airways.  They had never been used in a baby in the US and had only been used by a dozen or two babies in the UK, but only in their trachea, not their bronchus.  But most of the experts had concluded that this was a “relatively” low risk procedure to buy Oakes some time to grow out of the need for a more invasive surgery.  The idea was to insert the stents, fifteen weeks or so later, they would begin to biodegrade and we’d throw in another set and so on until he was big enough that he didn’t need the help.

§  Well, one day in February after a trip to the catheter lab, Dr. Eghtesady came by and surprisingly told us that Oakes’ bronchus were had opened up much more than his last trip to the cath lab.  Oakes was growing.  His little bones and little veins and yes, his bronchus, were all growing…..so much so that he apparently had outgrown the need for the biodegradable stents!  We were in awe, again.  How could he keep outdoing himself?  We were thrilled.  That was really the corner that we needed to turn…..

o   Lung Rejection.

§  This is an incredible part of Oakes’ story that we shake our head at every day – Oakes is still accepting his lungs!   Oakes has been having fevers from time to time and for a while, we all thought it had something to do with rejection.  As you’ll see later though, it wasn’t rejection at all.  But, we live with the reality that history tells us he will begin to reject his lungs again, at some point.

o   G-Tube.

§  Since Oakes’ lung transplant in July, he has been fed through a feeding tube going in to his nose.  Over time, these feeding tubes tend to irritate the wall of the esophagus.  Not to mention, the tape to keep the feeding tube in place covers up both of his cute little cheeks.  So a few weeks ago, the docs broached the topic of a g-tube.  Again, this was a scary subject to discuss and acknowledge, but we very quickly realized the benefits outweighed the negatives.  So early this year, he went in for a fairly major surgery.  They opened his belly up and, in total layman’s terms, they tightened the area near the top of his stomach to prevent acid reflux and loosened the bottom of his stomach so that the tightening of the top wouldn’t result in everything getting clogged in his belly.  Ironically, the scar from this surgery looks the worst of his three big ones (the other two from his open heart surgeries and his lung transplant).  It’s a scar right from the bottom of his open heart surgery scar to below his belly button. 

§  The G-Tube surgery went fine and now Oakes receives all of his medications and food through this tube.

o   His Head.

§  We noticed many months ago that Oakes’ poor head was misshapen due to months and months of laying in a bed.  The doctors decided to have a helmet made for him.  So for the last 3-4 months, Oakes has been wearing a cute, royal blue, plastic helmet.  It is the cutest thing to see his chubby cheeks with that helmet, looking like an old-school football player from the 40s.  Becky, of course, decided to jazz it up, so she glued a shark fin on the top of it.

§  The helmet really helped and his head almost looks normal.  He’s actually outgrown his first helmet, so we’re waiting for his new one to be made.

o   Our Little Junkie.

§  The scariest moments of the last 3-4 months have been Oakes’ many fevers.  Between October and January, he would spike minor fevers, 100 or 102.  We would culture his trach, his nose, his this, his that, trying to find an infection causing the fevers.  We’ve really never found anything at all, so everyone’s been a bit befuddled as to why he’s having these non-infection-related fevers.

§  On the morning of his first birthday, we got a call at 2:30am that Oakes spiked a fever to 108.  Yes, 108.  He was in danger of having a seizure or something else catastrophic.  Somehow, against the odds, he got through it after being wrapped in ice blankets for a few hours and after a CAT scan we discovered that the fever did not do any permanent damage.  So that was good, but it was bad that we had no strong indication of what was causing these fevers.  It wasn’t getting a lot of attention at 100 or 102, but 108 definitely got everyone’s attention. 

§  The theory now is that these fevers are resulting from Oakes withdrawing from his narcotics.  He’s essentially been on a couple or many narcotics his entire life, so weaning these very strong, very addictive narcotics has been tough on his little body.  So we have lowered the pace at which they are weaning his last narcotic, a drug called delotid.  He’s just a few weeks from weaning off of it entirely, barring any setbacks.

o   His Demeanor.

§  Lately, we have been so excited to see Oakes’ little personality poking through all of the narcotics and sedatives he has been on.  He has been smiley, giggling at times, happy, very aware of who is around and even interactive with toys that we hold up to him. 

§  His favorite thing to do is to chew on his hands.  He’s almost always doing this.  The other day he almost accidentally grabbed my pinky and put it in his mouth and started rubbing it against his teeth.  It hurt to the point that I had to pull my pinky back after a few seconds, so I don’t know how the heck his fingers have survived a year of this!

§  He loves his mama and sister and definitely recognizes us when we are there.  He also recognizes his nurses.  It’s funny because he’ll look at them out of the corner of his eye when they’re around.  He’s always wondering when the next shot or trach tie change is going to happen because these are his least favorite times of the day. 

§  Oakes has grown like a weed too.  Not in relation to a normal baby, but compared to his earlier growth rate.   

·         Other Fun Stuff.

o   Oakes Birthday.  As I said, Oakesie turned one year old on March 10th.  It seems like ten years ago, but everyone was super excited as the day approached.  The hospital staff threw a huge bash for Oakes including a custom-made Super Oakes logo cake!  SLCH PR department got a local Fox station excited about telling Oakes’ story which resulted in the following clip.  Of course, I’m smart enough to know that no one wants to see my mug on TV, so Becky handled the interview with her usual elegance and class while my main spot in the story consisted of a virtual billboard, showing off the Mighty Oakes logo t-shirt across my man-boobed chest.  It’s not hard to pick out… http://fox2now.com/2012/03/09/baby-hospitalized-since-birth-celebrates-first-birthday/ .

o   Yvonne.  Oakes favorite nurse, Yvonne Renick, was featured in the monthly newsletter that St. Louis Children’s Hospital publishes.  Of course, her topic was her favorite patient.  http://fromthebedside.org/2012/03/12/the-mighty-oakes-touches-the-life-of-his-nurse/ .

·         So What’s Next?

o   Well, another good question.  We were told we thought we could get Oakes home by Christmas, then by February, then by his birthday and we’re now hearing sometime in May.  My own personal feeling is that it will be sometime in the next 2-3 months.  But clearly, the fact that his airways appear to be stable, more stable than at any other point in his life and the fact that he is off milrinone and is now on a simple “home vent” that he can literally go home with, his days in the hospital appear, APPEAR to be numbered.

o   Barring any setbacks we are hoping to have our little man home before summer and I can’t even begin to articulate the emotions we are going to have checking out of the hospital.  At the same time I type this, I quickly realize that although we have come such a long way, we have many hurdles yet to overcome.  We’ve been close to home before, so we will continue to do the only damned thing that has kept us sane throughout this process – lean on each other and our family and friends as we simply take one hour at a time each day.

 

As I always lamely try to do at the end of these emails, I want to thank you all for your emails, notes, prayers, thoughts and support.  Please do not think it ever goes unnoticed.  Our lives are crazy, but we never ever take for granted how blessed we are with all of you around us.  We hear every word of encouragement and appreciate every question about Oakes and his condition. 

 

I hope I don’t go another six months before I send another update, but please check into the blog if you’re in need of an update.  In the meantime, I’ve attached a couple pictures from just this past Easter weekend.  Oakes recently was able to go to the rooftop garden at Children’s and is now scheduled to make that trip three days a week – a far cry from a few months ago when it took special permission and a staff of six to go just one time!

 

Anyway, I hope my next email will have to do with the struggle of adapting to a homebound Oakes!

 

Much health, happiness and love to you all,

 

Greg, Becky, Isla P. and Mighty Oakes

www.babyortyl.blogspot.com

www.mightyoakes.org