Sunday, July 31, 2011
Today was a tense day for us. We got a call from the hospital early this morning that they were planning to move Oakes from the oscillating vent back to the regular ventilator. By the time I got in, I missed most of the action - he had completed his pheresis for the day and they had already moved him back to the regular vent.
I talked with the attending doctor, whose name we've mentioned before - Dr. Doctor, yes, Dr. Doctor. They had been suctioning a lot of junk out of his airways, bloody mucus junk, which is one of the ways the rejection is presenting itself. He told me he thought Oakes tolerated the move to the regular ventilator pretty well. But the telling sign, he said, would be how Oakes was doing 12 hours and 24 hours out.
A few minutes later, they turned down his vent settings from 100% to 70% pressure. Within five minutes, his oxygen saturation level dropped from 94 to the mid-80s (the 90 mark is kind of the low-end of where they prefer this number). Nurse Shannon suctioned some junk out of his airways and his oxygen saturation kept dropping. They decided to "pump" suction him where they take him off the ventilator, squirt some saline solution into his airways, hoping to bring the junk up a bit, then stick a suction tube down his vent and try to capture it all. This was also scary because his oxygen was dropping during this as well and I could see all of the junk they were suctioning as it came up the tube. For maybe a half hour, they tried unsuccessfully to get his numbers back up - they suctioned some more, they re-positioned him, hooked some nitric oxide to his vent. Finally, they got him to about 88 or 89 and Dr. Doctor thought we should just let him sit for a while and over the next 45 minutes, he finally drifted back into the mid-90s.
Doc believes that he has no extra oxygen so that when he gets suctioned, it's difficult for him to breathe and that he just takes a while to recover from that. But for several hours thereafter, he was steady as can be. They weren't going to try another pump suction until this evening.
If he can somehow stay stable through tonight and into tomorrow morning, that will be the first sign that possibly, POSSIBLY the chemo medicine and the plasmapheresis might actually be starting to work in turning around the rejection. It's a long shot, but we'll know more tomorrow.
Long way to go for Oakes. I passed along all of your love to him today. Love you all.
Saturday, July 30, 2011
Oakes was stable enough this morning that they tried weaning his vent a bit, but he didn't like that, so they turned it back up. This shows how sensitive his lungs are right now. In the past he's been able to get weaned aggressively. Right now, with the rejection and related inflammation and mucus, weaning isn't working yet.
Connie said Dr. Huddleston came by and just shook his head looking over Oakes and made a comment along the lines of "another extraordinary condition, nothing unusual for Oakes."
I uploaded a video via YouTube from my phone last night, but I can't find it on the website now, so hopefully I can post that later today.
We'll try to post a couple updates a day. Love you all.
Friday, July 29, 2011
Friends and family, considering the tone of the update this morning, we thought we owed everyone another update this evening. They moved Oakes from the regular ventilator to an oscillating ventilator which pumps 80 quick breaths into his lungs per minute. The hope was that this would improve his breathing. It wasn’t so much the breathing in part that he was struggling with, but more the breathing out, or the discarding of carbon dioxide (CO2), just as important as getting oxygen to the lungs. Well, the oscillating vent helped bring his numbers back into relative normalcy. True normalcy is a CO2 level of about 35-40. At one point this morning, Oakes was over 100. By mid-day, they had gotten it back under control in the 60s/70s. So we are all praying that they are able to keep him stable for a while.
While he is stable, they can try to aggressively treat the rejection. The lung biopsy results came back today and it confirmed that it is rejection at the antibody level. So treating this type of rejection is twofold – a drug used in chemotherapy, which research has shown may help fighting rejection, and continued plasmapheresis, which was started today and will continue, again, for another five days. As long as he is stable, they should be able to treat the rejection, the big question is, obviously, can he rally past this rejection.
The rejection itself is not uncommon, but of course Oakes’ severity of rejection is very high, very serious. I just have a confident feeling that he is ready to rally one more time; he has one more good fight left in him…..which is crazy to think considering he’s been through more, in four months, than most families go through in a generation.
I hate to inundate people’s Inboxes with frequent updates, so if you’d rather capture updates from our blog, just shoot me a quick note and I’ll take you off the email list. I seriously mean that. I’m always torn about how long I should wait to send another update, so please let me know. Suffice to say, the blog gets much more frequent updates.
To give you an idea of how strong our Mighty Oakes is, I felt compelled to take a video of his CICU room today, so a link is below or you can find on YouTube. The amount of machinery, medicine and monitors was unbelievable and left me just shaking my head over and over. I’ll try to post the video to the blog in the next day or two. Forgot to mention, but during Oakes’ bronchial exam yesterday, the staff accidentally gave Oakes a dose of epinephrine (heart medicine) that was 40x, yes, FORTY TIMES, the intended dosage. This sent Oakes’ blood pressure skyrocketing, his temperature plummeting. He stabilized from that of course (piece of cake compared to his trek here). But they were worried that the high blood pressure may cause seizures, so they had to do an EEG on him. This entailed “sticking” about 25 small monitors to his poor head with a million wires going back to a computer which would identify seizures if there were any. They wouldn’t be able to tell without the monitor since he is under a paralytic, so wouldn’t move if he did have a seizure. The good news is as of this evening, there were no seizures detected, so Oakes beat that overdose as well.
That’s all I have tonight. Love you all. More later.
Greg, Becky, Isla P. and Mighty Oakes
The Mighty Oakes Heart Foundation
All, hope you’re enjoying your Friday mornings everywhere out there. We wanted to let everyone know that we really need (again) strong prayers and thoughts coming to our little Oakesie. He is rejecting his new lungs. He has been for several days, but it’s gotten more intense overnight to the point where the vent is not helping him breathe so his numbers are moving into dangerous territory. The doctors have decided to move him to an oscillating vent (something more intense than the regular vent) to see if that helps and, if it doesn’t, then he may have to go on the ECMO machine which will buy us a few days to try to figure out if they can treat the rejection. At this point, he’s not a candidate for a second transplant or the artificial lung machine, so we’ll just have to see how he does the next day or two. We have seen him rally from this before and we expect the same. However, the doctors don’t seem as confident. So….one day at a time, one hour, one second….we’ll get through this and, as always, we love you all and we appreciate all of the thoughts and prayers.
Greg, Becky, Isla P and Mighty Oakes
The Mighty Oakes Heart Foundation
Thursday, July 28, 2011
Wednesday, July 27, 2011
Hi family….I’m emailing you all the latest with Oakesie, but will copy blog so others can get an update here.
As some of you know, Oakes has been having “fits” the last few days or “episodes”, as the hospital staff calls them. These episodes are occurring as Oakes is waking up from his paralytic medicine. Eventually, as he wakens, he starts to fuss and his face will turn red and his numbers will degrade (oxygen levels go down, heart rate goes up, blood pressure goes up). They typically have to give him more paralytic and suction his throat/airway and he calms down, usually, after a few minutes.
This is not good since the doctors want to get him off the ventilator asap and want to see how he does with his new lungs. Well, these episodes have slowed this process down obviously. After several days of this, they have started to call these episodes “bronchial spasms”. These bronchial spasms are similar to what you’d see in patients with asthma, but they know it’s not asthma since the donor did not have asthma. Apparently, Dr. Huddleston and others have seen this in infant lung transplant patients before (remember, no one has done more in the world than Dr. H). The problem is, they don’t know WHY it is happening which, of course, is disconcerting to us. So they are in the process of eliminating reasons why these spasms are occurring.
There are many reasons they could be occurring – some type of allergy (which we think caused his rash earlier in the week), some type of rejection of the organ, possibly something restricting the airway in the bronchial tubes or maybe some inflammation where the new bronchial tubes were sewn to the old bronchial tubes. The allergy reason seems odd since he had most of these medicines after previous surgeries.
Step one – bronchial exam tomorrow morning to see if there is anything restricting him. For tonight, they plan to keep him completely paralyzed since they’re not sure what might be wrong. Dr. Huddleston stopped by about 7:30pm and filled me in on all of this, which was helpful because this has been confusing, at best, for Becky and I to understand fully. There have been so many medication changes and tweaks to his ventilator and different theories that we sort of lost track as to what the core issue was and how they were treating it.
Dr. H thinks we’ll just have to ride it out a bit while we figure out what might be causing the issues. In the meantime, his five-day plasmapheresis treatment is over. When they tested him today, they saw that his antibody levels are about “normal” for a baby his age, which is awesome. However, the next week is critical to see how his body produces antibodies. The hope is that it will produce a normal or only slightly higher than normal amount. If his body produces a significant amount of antibodies in an attempt to combat the lungs, we’ll have another issue to deal with.
That’s the quick update. Love you all.
Greg, Becky, Isla P & Mighty Oakes
The Mighty Oakes Heart Foundation
Tuesday, July 26, 2011
Monday, July 25, 2011
Sunday, July 24, 2011
You can see the lines of blood wrapping around the face of the machine then up to Oakes bed. He was wrapped to keep him warm as the cold blood entered his tiny little body.
Saturday, July 23, 2011
I got to the hospital and CICU this morning just in time to don my yellow plastic gown, mask, and royal blue plastic gloves (standard attire for EVERYONE in Oakes' room now). Keep your nasty germs to your self! (And the the gloves are definitely presenting a challenge to keyboard accuracy.)
As soon as I got myself in place, Rounds moved in front of Room 9, Oakes Place. There was a full on team! My best laywoman's interpretation of all of the numbers and technical jargon is that at a little less than 24 hours out, all is going about as well as could be expected. They are watching the monitors, heart rate and oxygen levels, drainage, temperature, and he is getting a plethera of drugs to paralyze, sedate, block pain, regulate heart rate, and God and the Attending only know what all else.
Both surgeons were present and lots of technical data was exchanged. When they were ready to move to the next room, Dr. , the primary pediatric cardiologist, who has performed most of Oakes procedures turned to me and said, "So basically everything is okay right now." And that's okay by me.
Dr. Caroline Lee, the cardiologist (not surgeon) who has been following Becky's pregnancy and performing cardiograms and echocardiograms stepped into the room just to satisfy her own curiosity and check Oakes out herself. She is the closest thing to having a cardiologist in the family. She is so personable, and obviously very attached to the Ortyls. She asked me all about the family, how many children, where everybody lives, and expressed her gratitude that our family keeps rally behind Becky & Greg and showing up for the big scary procedures. She said it was heartwarming to her to walk into the private waiting room on Friday and find all of us there keeping vigil with Becky & Greg.
Dr. Lee admitted that she is not an expert on lungs, but that she was relieved to see how well Oakes was tolerating he surgery, and her interpretation of all that was said during Rounds was that so far, everything was good.
Before she left, two doctors from the Pulmonary Team came in. Keep in mind, everyone is draped and masked, so there are all of these blue hands shaking each other. I don't think I could pick these doctors out of a lineup, but they both had very kind eyes, about all that is left of the person. They also said that things were going about as well as they could hope for right now. Their biggest concern is the rejection issue, and Oakes is at a higher risk than the already high risk infant lung transplant because of his elevated antibody levels. There are medications that they are giving to help to alleviate the antibodies. They also completely transfused his blood during the transplant to eliminate as much of the rejection issues as possible. Today, Oakes will begin a 5 day process of plasmaphenesis. Essentially, through one of the already inserted ports, they will pull his blood out of his body, through a membrane that will capture the antibodies, and the circulate it back into his body. Depending on his size and how well he tolerates this process (heart rate, oxygen levels, etc.) this could take several hours. They will repeat it for 5 days. Then they will give him donor antibodies to help him maintain the normal immunity that a healthy body is supposed to have. Yesterday,they used a scope to examine his trachea from the inside. To check the points where his trachea was connected to the new donor lungs and branches. This, too, they said looked good.
Another bit of info that I picked up in rounds, and was confirmed and explained by Dr. Lee and the pulmonologists is that the donor lung was a little bit too big for Oakes' lung chest cavity, which required the doctors to do some trimming. Apparently, in cases of infant lung transplant, this is not unusual, and that is easy to see why. I asked them what kind of trauma that creates for Oakes, and they said that it really didn't add to the trauma he was already experiencing. He mentioned something that I'm thinking was there were some drains at the point where the lungs were trimmed. We'll definitely need to clarify all of this.
Becky and Greg, when the pulmonologist left they asked if you two were coming up today, and said they would try to talk to you when you got here.
So, that's it for now. This is a of the CICU this morning. And I assume it will stay that way, for now. Oakes looks like a little angel, with a wild hairdo. I think the prayer vortex has swept him up to his safe and happy place for now.
Love from Connie Fox Moore/ Ena (Grandma - Becky's Mother)
Friday, July 22, 2011
Good evening, everyone. Hopefully you are all staying cool and enjoying your weekend with family and friends. We are at about 11:00 ONL time or 11 hours into “Oakes New Lung” time. So far, things are going pretty well. If you’d like a play-by-play of the action last night and throughout this morning, you can check out Beck’s blog at www.babyortyl.blogspot.com. The abridged version of that is that the transplant was postponed from 10:30pm until 2:45am. Apparently, the donor’s hospital typically has multiple offers out to multiple other hospitals throughout the country and they need to coordinate the harvesting of all of the organs at the same time, which is really amazing….that was the cause of the delay. They kept telling us that there was a possibility things could be cancelled if the lungs, at any time, didn’t look darn near perfect. Anyway, we waited in the same-day surgery waiting room and we were, not surprisingly, the only ones waiting until about 5:30am when the staff came in and then other families started to trickle in for surgeries during the day Friday. We got updates every 60-90 minutes and then we received visits, in order, from Dr. Lee, Oakes’ cardiologist, Dr. Eghtesady, one of Oakes’ cardiothoracic surgeons and finally Dr. Huddleston, Oakes’ main cardiothoracic surgeon. All of them said the surgery went well. The worst thing they could say was there was some hypertension in the veins, but not totally unexpected. For the first few days, anyone entering his room, including nurses and family, has to wear a gown, a mask and gloves as he is super susceptible to germs (of course, he will always be more susceptible to disease and germs than his peers). Anyway, I’ve attached a picture of the Mighty man to this email. This picture was taken about two hours post-surgery. At some point, we’ll have to name all of the lines, tubes and caths in this picture…but not tonight.
So ultimately, Oakes is resting comfortably, heavily sedated and paralyzed this evening and his numbers are all, at this point, very good. They have actually been aggressively weaning him off of his oxygen already. So much so that they have been surprised at how much they’ve been able to wean him. But we are not even remotely close to out of the woods.
The biggest issue with any organ transplant is the risk of the patient’s body rejecting that organ. In Oakes’ case, that risk is significantly higher. Because Oakes has already had a significant amount of “foreign” blood pumped into his body from his two previous open heart surgeries and because he’s had cadaver tissue implanted in his body for his heart and arterial repairs, his antibody levels are very high. Set that aside for a moment. There was a very small chance that they type of donor lung tissue would be the type that Oakes’ antibodies would not aggressively attack, however that test, which was run at the beginning of the transplant, showed that Oakes’ antibodies would indeed attack the donor tissue. This was no surprise, but because of how high his naturally-produced antibody levels were going into the transplant and because of the fact that we knew he’d produce antibodies to attack this new lung tissue, they have to take aggressive steps to reduce his antibody levels. First, he required a plasma exchange procedure during the transplant. This involved, essentially, removing his blood from his body and stripping away about 90% of the existing antibodies. Second, he requires plasmapheresis once a day, beginning tomorrow, for five days. Plasmapheresis involves, again, removing the blood from his body through two venous lines, and having a huge machine remove the antibodies again. Each time this procedure is done, it effectively removes 80%-90% of existing antibodies, which hopefully is a much less number due to the plasma exchange already completed early this morning.
So here we have a four month old baby, having already had two open heart surgeries, with a lung transplant needing plasmapheresis. It is a mix that St. Louis Children’s Hospital, which has done more pediatric lung transplants than any hospital in the world, has never seen before. They have done plasmapheresis on heart transplant babies this young before and the data tells them that at some point during Year One post-transplant, the patient’s body will reject the organ. But if the patient can somehow rally past this rejection, their odds of survival are the same as any other transplant patient. Of course, that is with a heart transplant, no one really knows about what the stats say about plasmapheresis on a baby as small as Oakes who has had a lung transplant. Unchartered waters, as usual, for Mighty Oakes.
The first plasmapheresis is tomorrow morning, so we are trying to catch up on our sleep after being up for about 38 hours straight as of right now. If you read some of my posts on the blog, you can sense some sleep deprivation; I barely remember typing that stuff.
If you read one of my previous emails (can’t recall which one), I mentioned that one of Oakes’ friends, Ronan, had passed away last week. It was so shocking and crushing to hear, especially with everything that the Bush family went through with him and his younger sister who was already in heaven by the time Ronan was born. Anyway, I have read this five times now and it is such an emotional reading for me and Becky – Oakes was named in his buddy Ronan’s obituary:
On that note, I’m hitting the hay. We love you all so much and we’d be remiss if we did not mention how incredibly grateful and blessed we are that there was another family out there who allowed their baby to donate their organs, which has, in return benefited Oakes (and it sounds like several others as well). Organ donorship is the reason Oakes is still alive today and what an amazing gift to be able to give.
We will keep you posted on Oakes in the coming days, but as always, please check in on the blog to get more updates and pictures. Details on The Mighty Oakes Heart Foundation event on November 11th & 12th will also be coming soon!
Greg, Becky, Isla P & Mighty Oakes
Isla & Oakes right before we walked out of the door to head to the hospital.
THE Coleman cooler. Martha Stewart may have an opinions on how this gift was presented and delivered, but we sure don't! (our camera went with Oakes into the OR and I think this is the only picture we will be posting!)
Thank you all for your prayers and well wishes and notes!
Just as I was typing this, Dr. Eghtesady, the other cardiothoracic surgeon along with Dr. Huddleston, dropped by the room. We didn't know this, but he was in on the surgery helping Dr. H. Dr. Eghtesady said he thought Dr. H did a great job and that overall the surgery went well. He also said that Oakes is off the heart and lung machine. He mentioned a little bit of hypertension in his veins, but nothing terrible and it was kind of expected. So he thought Dr. H would have Oakesie all patched up in another 30-45 minutes from right.....NOW!
We've had three updates from the OR thus far. The first update was sometime around 3am and was that they were having trouble getting an arterial line in. This is no surprise because they've always had trouble accessing an arterial line with Oakes. The second update, around 4:40am, was that Dr. Huddleston had just started the surgery which means he was making the incision and was about to get Oakes chest cavity ready to remove his lungs (THIS IS SURREAL...I CANNOT BELIEVE I AM LIVING THIS!!). Just got another update about 6am that they were getting ready to put Oakes on the heart-lung machine, which he's all too familiar with. This machine does the work for him while they work on his lungs. Also, the lungs were "almost here". Please lungs, please, please be the right ones for Oakes. God, you can help us out here too. We need some good news from here until, oh, about 50 years from now!
Beck is asleep on a very uncomfortable couch, but at least it's dark in our tiny waiting room. We're all very tired. More later.
We'll get updates about every 60-90 minutes and will try to keep those insomniacs amongst you happy! For those of you following along live, we have a treat for you! This is just a classic picture of Oakes mere seconds before they took him around the corner to the OR. He had peacefully fallen asleep after many smooches to his head!
Greg, Beck, Isla, Oakes
Thursday, July 21, 2011
We didn’t think we’d be emailing you all again so soon, but we really need everyone to upgrade their thoughts and prayers before you all go to bed tonight. Barring any last minute issues, Oakes’ lung transplant happens tonight from about 10:30pm until about 5:30am. We got a call this afternoon that was both breathtakingly exciting and incredibly nerve-racking….the nurse coordinator, Pegi, called and said they had an offer for lungs and that we needed to get to the hospital asap. My mom zoomed over to the house to watch Isla, who was very visibly confused, and we zoomed off to the hospital.
They are doing all kinds of tests on the Mighty Oakes and they’re also reviewing additional data on the donor lungs. Just before the plane takes off to fly to the secret location, they’ll run another test on the oxygen/gas levels on the donor and if it checks out, they’ll fly to the location. Once there, the “Harvest” surgeon and accompanying Fellow will do one last second visual check on location, then harvest the lungs, drop them in a Coleman cooler and zoom back to St. Louis. The idea is to get the lungs into Oakes asap.
So there is still a chance that the last minute tests make the donor lungs unacceptable, in which case they’ll deem the mission a “dry run” and we’ll head back home and wait for better lungs. But if the lungs check out alright, little Oakesie will wake up tomorrow morning a new man…or at least a man with new lungs.
We can feel everyone’s love and prayers and it keeps us comforted during this time. I will do my best to keep you posted.
Greg, Becky, Isla P. & Mighty Oakes
The Mighty Oakes Heart Foundation
Wednesday, July 20, 2011
Good evening, dear friends and family. As always we hope you are all happy and healthy! If you don’t read anything here, please read the last four or five paragraphs, as that is where we will most need your help!
It is hard to believe, but it’s been 17 days since our last update email. In that email, we had passed along that Oakes had just received three stents in his pulmonary veins with the hope being that those stents would provide some stability from the pulmonary stenosis that had been wreaking havoc with Oakes’ veins.
Well, we are happy to pass along that the last two weeks have really been the happiest days of Oakes’ four plus months on earth. It is clear that, at least for the time being, the stents are, in fact, doing their job and letting the oxygenated blood flow more freely back into his heart. Remember, this pulmonary stenosis is a progressive disease so we know it will narrow his veins somewhere at some point in time, we’re just not sure if that’ll be this week or in six weeks or when. The stents are simply to buy us more time in our wait for a good set of lungs. But at least they are working for now, so we have to focus on these good times.
The last couple weeks, Oakes has been full of smiles and stretches and faces for all of his visitors. He was moved from the CICU down to the recovery unit about ten days ago. Different from the CICU, the recovery unit typically has two patients per room. Oakes literally had five roommates in his first six days there!
This may surprise some of you, but Oakes actually came home yesterday. There were whispers about this a couple weeks ago, but we had been down that road before only to have a hiccup or two cause the plans to change. This time, though, he actually came home!! Of course, he came home with all kinds of souvenirs again – the oxygen machine, the cannula feeding him oxygen, the NG tube which we feed him through every three hours, his Broviac catheter line which we feed his heart medicine, milrinone, through on a continuous feed and then we also have a fancy pump that regulates the rate at which we feed him through his feeding tube. He will have a nurse visit him four times a week, a speech pathologist visit once a week to help him learn how to eat by mouth again and a physical therapist visit once a week to help him try to physically catch up to his peers a little bit. As happy as we are that he is home, you can imagine this is just a different type of stress than the hospital. It’s truly nice not to have to visit the hospital every day and Isla could not be happier that “Oakesie” is home! Right when he got home, she asked “Oakesie? Stay?” It just made us cry..…because of the cuteness of the question as well as the reality of the answer.
So we are just hanging out waiting for a good ol’ set of lungs. During Oakes’ first night, last night, he was working a little harder than normal to breathe. We’re not sure what it is, but we’re keeping an eye on him. We are very sensitive to the “pulling” or “retraction” around his ribs which would be a clear indicator that he is working too hard to breathe. He is tugging slightly now, but we’re holding out hope that this goes away soon, otherwise we’ll probably have to head back to the hospital at some point. If the stenosis returns before we get lungs, we’d either have another cath procedure to open up the lungs (possibly including more stents) or we’d move to the artificial lung machine I talked about in my last email.
I mentioned in previous emails about fundraising so I wanted to touch on that quickly. Ever since Oakes was diagnosed with his congenital heart defect while he was in utero back in October, Becky and I have been asking ourselves “Why? …..Why us? …..Why Oakes?” I mean, this was not in any of our plans and it has turned our lives upside down. In the last three to four weeks, we believe we have started to understand, at least in small part, maybe “why” this has happened to us. In talking with the fundraising coordinator at St. Louis Children’s Hospital, she advised us to work with one of three national organizations which assist families in similar positions in fundraising. The more we looked into these organizations, the more it dawned on us that we should start our own foundation. We would have more control over where and why the funds were directed and this would create a lasting legacy for Oakes that, hopefully, will be here helping other families dealing with congenital heart defects long after Oakes has left us, whenever that may be. The fundraising coordinator told us that most of the families she works with are in the position of absolutely having to raise money during the time of hospitalization and post-transplant. Not all of these families are as fortunate as ours – having a tremendous network of family and friends with the means to help, having amazing health insurance coverage and having one of the best Children’s hospitals right down the road.
So we have decided to found The Mighty Oakes Heart Foundation, a non-profit organization dedicated to providing financial support to families coping with the traumatic reality of congenital heart defects, the most common birth defect in the United States. In an effort to help improve the treatment of congenital heart defects, the foundation will also endeavor to identify leading research and development grant recipients. We are SO EXCITED about this foundation and really want to make it a success….but obviously we’ll need a lot of help along the way.
We are in the midst of putting together a Board of Directors, a website, a logo, a filing for our non-profit status and a huge fundraising event to be held here in St. Louis in November. Ellen Moriarty, our dear friend, is spearheading the efforts around the November event. There will be much, much more detail in the coming days and weeks but in the meantime, please SAVE THE DATE – NOVEMBER 11TH & 12TH.
All of you are asked to contribute to charities throughout the year – ones close to your families or other friends, ones that let you play golf on a work day J, ones that help with some current tragedy and many others. This just happens to be one that is close to our family and close to our heart and, obviously, Oakes’ heart. And we think we can help a lot of families, families that we have gotten to know well.
Oakes lost one of his new friends from the CICU last week. Ronan, the little boy who was the first baby to be put on the artificial lung machine, took a turn for the worse one night last week and passed away. It was crushing news to hear because him and his family had been such a fixture on the floor and Becky had befriended Ronan’s mom….and then one morning we came in and his room was empty and everyone was gone. Ronan’s family had a baby girl a couple years ago with a rare disease that there was no cure for and she passed away as an infant. They were told if they had another baby the odds were something like one and 10,000 that the baby would have the same disease…..then Ronan was born, with the same disease. Fortunately, this time around, the artificial lung machine was available to buy Ronan some time while they tried to “fix” him. Ronan’s family had spent the previous few months staying at the Ronald McDonald House here in St. Louis because they lived in northern Michigan. This would be the exact type of family we’d love to be able to help. Not that things would have necessarily turned out different, but helping make their lives easier while dealing with such an emotionally-draining and physically-exhausting (not to mention expensive) time in their lives.
That’s all we have tonight although I did attach a classic picture from last Friday of my gorgeous family. This is my phone screen saver; love it! I’m sure Beck will be posting additional pictures on the blog soon as well. Enjoy, keep the prayers and thoughts coming and we’ll be in touch soon!
Love you all,
Greg, Becky, Isla P. and Mighty Oakes