Good evening friends and family. We hope you’re ending your week beautifully. I apologize for the extra delay in this update that I had originally promised no later than Friday. We were able to update the blog a few times since then, so this may be repetitive if you’ve visited the blog lately.
In short, Oakes is earning his nickname “Mighty” Oakes in a big way. He’s absolutely rocking the CICU! So here is the last four days summarized as briefly as possible while trying to hit all the key updates.
Thursday, as you know, Oakes had a procedure to repair the wound in his chest, which was still open from when they accessed his heart and trachea during Tuesday’s surgery. Originally set for 1pm, they moved it to 11am. Becky and I were running late and got to kiss him on his forehead just a minute before they started. They did this in our CICU room while we waited in a consultation room a few feet away. Within 30 minutes, Dr. Huddleston was in our room letting us know everything went as planned. They weren’t sure how many stitches they used, but they were all under the skin and would dissolve over time. They’ve come a long way with stitches since I was a kid. They did have to wire his sternum together, but they said this, too, was not a long-term issue since the bone would grow around the wire without issue. Dr. H, as is his way, did mention the “worst case” scenario of needing to re-open his chest at some point if things went awry. If all was well, he estimated by Saturday morning they might remove the breathing tube or “extubate” him as the medical folks call it. He also said that the first 6-8 hours were when most issues, if any, would occur. What has become a recurring theme, Oakes flew through those hours without issue. By Friday morning, they were taking Oakes off the paralyzing medication, reducing his pain medication and removing several of his lines that he had throughout his body.
Friday afternoon, Oakes was extubated, clearing the 4th milestone Dr. Huddleston had mentioned (1 – surgery, 2 – first 12 hours post-op, 3 – closing the chest, 4 – extubation). It was an incredible accomplishment for the little guy! It was so incredibly exciting to know he had cleared all four milestones, but we knew we had a long way to go.
Friday night, we took a couple hours to have fun, so me, Becky and her mom went to dinner to celebrate Oakes’ recovery as well as Becky’s birthday, which happened to be on the day of Oakes’ surgery.
Saturday was a smooth day again. Doctors were coming by to check on him periodically and all the reviews were extremely positive – he couldn’t be doing any better. Becky got to hold Oakes for the first time since right before surgery on Saturday afternoon and they finally let us feed him – his first real food since March 11th, his second day with us. They also took out his drainage tube to his heart yesterday, the last tube other than the two lines out of his left arm they use to give him medicine and draw blood. By the end of the day yesterday, he was totally off pain medication except an occasional dose of Tylenol. Today, Sunday, was a day where we could hold him and feed him (or “try” to feed him in my case). None of his monitors alarmed at all throughout the day indicating he was comfortable and healthy. Overall, Oakes appears mostly happy. He doesn’t have a full cry back yet, it’s more of a half-cry, very soft and sweet, but indicating he’s not happy about something. He rarely does this, but his blood pressure goes up when he does, sorta like his papa. He’s also opening his eyes a lot more know and looks just as cute as ever!
We are expecting Oakes to get moved to 7-West, which is a step-down unit from the CICU (although literally down the hall), sometime tomorrow (Monday). This will mean, as long as everything continues to go smooth, that he could be home by Thursday or Friday. I’ve asked him to be good and get home by Wednesday. It appears as though the Mighty Oakes is a few days away from spending time with his big sister, Isla P, at home. This will be some precious time and we cannot wait!
The one thing that continues to linger in our heads and is causing an incredible amount of uncertainty and fear is the genetic testing. Some of these tests may start to trickle in some time this coming week. And we’re not sure if the results will even be conclusive. Needless to say, we’re planning on having a thorough, sit-down meeting with the geneticist soon. All of the surgery and recovery has really taken most of our minds off of what could be looming ahead, but now that we appear to have that in our rearview mirror, we are turning toward the genetics part of this. So with that said, we cannot thank you enough for all of your prayers and thoughts over the last two weeks – they have obviously helped pull Oakesie through all of this – but we would still like to humbly request that you keep them going for just a couple more weeks. Technically, we don’t have the test results back yet and we’ve had no diagnosis so maybe all of Oakes’ Angels here can make those chromosomes look as tidy as possible. But yes, it appears that, at minimum, we’ll have a little baby boy, named Oakes, with a repaired heart and trachea, who has inspired hundreds of people he has never met, coming home to be with his family. And we’ll love him forever.
Becky has put some GREAT pictures on the blog showing Oakes without as many tubes and wires as before. Hopefully you’ll get a sense of how comfortable he is now. Some of you have asked about visiting, which is so sweet. With everything going on at the hospital and as sensitive as his body is right now, Beck and I are thinking we should wait until he’s home for a couple weeks before we have too many visitors. So if you feel like visiting then, just shoot us a note. Also, I’ve been poor about returning emails the last 3-4 days, so I apologize for that, but know that we have read every single one and each of them has been incredibly appreciated. Those emails and all of your prayers are the only things that have kept me and Becky strong throughout this process.
Since Becky and I are now overlapping in emails and blog-posts, I’ll probably stop these for a while or at least stop the long, descriptive emails and maybe replace them with quick updates when anything major happens (i.e. he comes home).
Greg, Becky, Isla & Oakes
Good afternoon everyone. Hope you are all having as good of a day as Oakes! Yes, our little man is greater than 24 hours post-op, the most critical time for recovery and he is doing well. I don’t want to overstate or understate his condition, so I’ll try as best I can to give you the reality of the situation.
If you’ve kept up with the blog, you know that I spent the night with Oakes. It was a long day yesterday, since we were at the hospital from 6:30am to about 5:30pm. We went home and had a fun, sort of relaxing dinner on our porch – me, Isla, Becky, Connie (Beck’s mom) and Sarah (one of Beck’s sisters). I say ‘sort of’ because Isla was obsessed with wanting us to blow bubbles the whole time. It’s one of her favorite things in life. After dinner, I headed back to the hospital and got there about 8:30pm. Although Connie has spent the night a couple times with him, it was the first night I spent with Oakes. All I can say is that I could just FEEL him telling me he wanted his papa with him last night – there was just this tremendous tug on my heart and really my whole being to be in the room with him during his most critical time. I never really discussed it, I just showered, packed and was on my way. When I arrived, his blood pressure was too low, so they tweaked the medication. The nurse, Mary, kept telling me that it’s just a delicate balancing act during the first 24 hours to find the right cocktail of medication to stabilize everything. Well, by 11:15pm, his blood pressure was too high, so they again tweaked the medication. By 11:45pm, his vital signs were right in range of where they should be and, miraculously, they stayed there all night long and remain there as of 5pm today! That means, more than 26 hours after surgery, the Mighty Oakes, has made it past the second major milestone that Dr. Huddleston had laid out for him. It’s so hard to be ecstatic or overly relieved anymore because there are so many hurdles remaining, but I’m so proud of how hard he is battling.
We had our first non-family visitor to the hospital last night. My buddy Derek Falb was keeping up on the blog and said he just couldn’t imagine being alone in the room with Oakes, so at 10:45pm, he decided to drive 30 minutes to the hospital to hang out with me and Oakes. As I mentioned in the blog, it’s a small miracle security let him through, but it was fun to chat about other things besides blood pressure and lactates. I definitely never felt alone. Besides the fact that Oakes was there and Mary, our nurse, was there, I had such a serene feeling being there with him. I loved it. That’s why I only slept two hours!
Throughout the night, the only issue Oakes had was that his lactates (lactic acid) were higher than they’d like. They started him on some diuretics today and they have been lowering ever since, so he is really right on path to the third major milestone which appears will happen tomorrow early to mid-afternoon. The omni-present Dr. Huddleston has a surgery tomorrow morning and then will come by Oakes’ room to close his chest. They’ll do this procedure in his existing CICU room. It will be critical to see how his heart and other organs respond to having less room to beat and do their job. Right now, when he breathes, it’s quite graphic because there’s really not much between his actual heart and your eyes. When I look at it, I go from amazed, to feeling queasy, to being inspired all in split seconds. So we are praying hard that all of Oakes’ organs will be happy. We’ll have to somehow incorporate this into Isla’s favorite song tonight before bedtime “If You’re Happy And You Know It…”
When Connie relieved me this morning around 8am, I packed up and was ready to leave. I leaned over Mighty Oakes and told him I was proud of him and loved him so much and that mama and Isla love him. Right when I got done, his whole body twitched. I’m convinced he heard me and understood me. The nurse will tell you that he randomly twitched throughout the night. But as I said, I’m convinced….
I think you guys would all love Dr. Huddleston. He’s obviously a miracle-worker, but he’s also a funny guy to observe. He is very, very to the point and, unlike me, very selective in his words and only speaks when absolutely necessary. He walks very slowly and sometimes will walk into our room, stand over Oakes, listen to his heartbeat, look at his monitors and walk out in about 2-3 minutes and without ever saying a word. I can’t imagine the lives he and his colleagues live, but I can say I have just unparalleled respect for their profession, their heart and their wisdom.
Hopefully no updates for around 24 to 48 hours when we know how the closing of the chest went tomorrow. Of course, that doesn’t preclude some blog updates, so feel free to visit there. In the meantime, here is a picture of gorgeous Mighty Oakes before surgery, very early yesterday morning, fresh from a bath so his hair is super soft and spiky. Thank you all!
Greg, Becky, Isla & Oakes