Hello friends and family. We are long overdue for an update on our Mighty Oakes but, as you can imagine, things have been a little busy around here. After thinking Oakes would be home Thursday and then again Friday, Oakes finally made it home to his family this past Saturday afternoon and we couldn’t be more thrilled!
His trip home was delayed a couple of days past what we had thought due to a couple of issues. The biggest issue, which actually still remains, is his oxygen levels. Throughout almost the entire day, every day, Oakes’ oxygen levels have been fine, mostly better than fine. But once or twice a day, they would drop below the acceptable levels and hover there for longer than the doctors liked. So they would keep him an extra day hoping to see him sustain good oxygen levels the entire day, but he’d always slip back every now and again. On Friday morning, we thought we would have him home by around noon. The last “test” before he is allowed to be discharged is the “car seat test” where they stick him in a car seat for two hours. He would pass if his oxygen level stayed above a certain level. Becky was going on her second straight day shift and was beyond ready to break out of Children’s. As luck would have it, Oakes’ oxygen level dipped below the line in the last 10 minutes, literally. And the car seat test nurse (that’s her official title) flunked him. At that point, it was determined that whenever Oakes was coming home, he was coming home with an oxygen machine…..now the question was when. Dr. Huddleston stopped by to comment that our son had flunked the first test he ever took. I thought it was a funny line; Becky, not so much. Fast forward about nine hours to 9pm Friday night. Becky and Oakes were STILL at the hospital trying to get all the discharge paperwork completed. I could sense how exhausted, mentally and physically, Becky was and told her that she should politely, or even not so politely, inform the doctors that she was going home to sleep in her bed and would be back in the morning to get Oakes. Fortunately, she gave in and came home and got some much needed sleep in her own bed.
The doctors believe they know why his oxygen levels dip from time to time. [Pardon any errors as I try to speak in laymen’s terms] Apparently, the cadaver “tube” graft the doctors used to create the pulmonary artery is slightly bigger than Oakes’ vessels that they connected it to. This was on purpose, so that Oakes could essentially “grow into” the new vessel. The docs think that there is some “congestion” (I think that’s what they called it) where the two are connected and is causing the oxygen levels to dip. Oakes will go in for a procedure in about six weeks where they hope to alleviate this congestion. We haven’t asked enough questions about this procedure yet, but they’re basically going to inflate a small balloon within this area where the two vessels meet and apparently by expanding the balloon a few times (this is a guess, I have no idea), they’ll relieve the “congestion” and thus, the oxygen issues.
The other issues are, hopefully, minor. Oakes’ calcium and magnesium levels are lower than they’d like to see in a baby his age and (this is the concerning part) no one is exactly sure why they are so low. One theory blamed the lasix – the medicine he has been on for three weeks or so to help dry him out. Low calcium and magnesium, apparently, can sometimes be caused by lasix, but no one is certain. They kind of hope he’ll just grow out of it, so we’ll see how that goes.
One of the last issues is that Oakes gets bored with eating quicker than he should (I think he’s my kid). Since he’s started taking a bottle, sometime late last week, he’d get disinterested and fall asleep before he finished his required amount so the nurses set up a feeding tube, or “NG” tube, so they could finish up his meal through the tube. I had to go in Thursday and actually insert one of these NG tubes through his nose. It was not fun for me and especially not fun for Oakes. But mama and papa both learned how to insert the feeding tube since he was also coming home with one of those so that we could make sure he was getting enough nutrition.
So Oakes came home Saturday, finally, after 23 days in the hospital which included one aborted surgery, one successful open-heart surgery and more prodding, sticking, poking, pushing, drugging, alarming and general discomfort that you can imagine. And he handled it with strength, courage and, of course, “might”.
Oakes was greeted by his papa, our yellow lab Ashby and our gorgeous Isla P. when mama brought him through the doors for the first time. It was emotional to see Beck bring him in and even more emotional to see Isla’s reaction. Here was the Oakes that we had been telling her about for months. The Oakes that used to be in mama’s belly. The Oakes in all the pictures with the “boo-boo” on his head. Her baby brother, Oakes. And she was…..as poker-faced as you could be! In her little Isla way, she just stared with intense interest, a wall of caution and her lips pursed. Our friends, The Moriartys, were here and watched as we tried to gather everyone, including Ashby, together for a quick “Oakes Just Came Home” pic, but not sure it will make the blog (it will be the editor’s call).
So the good news is Oakes is home. The bad news is he brought a bunch of damned souvenirs. A rolling oxygen machine. Several portable oxygen tanks for when we need to leave the house. A stylish “BJC Home Medical Services” brand oxygen tank tote. A feeding tube closely overlapped with an oxygen tube, both going in his nose and taped to his cheeks. Five medications to manage everything from his low magnesium levels to his general pain to his urinary tract infection from 10 days ago. And we have all kinds of medical supplies they sent us home with – gauze, wraps, tape, tubes, syringes and more.
The worst part is there are no monitors that I can keep a constant eye on to make sure everything is okay…or not. No alarms to alert us if things are awry. And there are no nurses watching him and tweaking his medications. No doctors that come by to tell us the “plan for the day”. Yes, if it’s possible, my stress level has doubled. As most of you know, I stress over basically everything, so you can imagine my stress now. But I really shouldn’t complain considering he’s home and he’s recovering nicely from such a tough three weeks. Becky, of course, is rock solid, calm, treating the situation as if she was made for it….and really, she was and is. She is an incredible mom and, those who know me well know that I would be in deep, deep trouble without her. Things that send me into panic mode are things that she takes totally in stride. She always knows the perfect thing to say and the perfect thing to do. I’m trying to learn from her, but I have a long way to go.
The first couple days here, honestly, have been tough. The oxygen tube (50’ of tubes connected to the machine) and feeding tube are pretty inconvenient when it comes to carrying him around the house and trying to do simple things like change his diaper or put clothes on him. He’s also had trouble keeping his meals down. Not sure if it’s all the medication or just some reflux or what. But he is as comfortable as we’ve ever seen him and we’re keeping him clean and fresh. He just looks so much better than when he was at the hospital, which I guess makes sense. We just gave him a bath tonight and his hair is super soft and fuzzy even though Becky wanted to style it into a “faux hawk”. He continues to get cuter by the day.
The highlight of Oakes’ three days home was definitely tonight. Becky was feeding Oakes around 6pm and Isla climbed up on the chair with her and stared at Oakes for about a minute without any facial expression and without saying a word. Then she leaned over and kissed him on the head and began rubbing his hair as if to comfort him. She continued to rub his head while mama fed him and every couple minutes would give him a gentle smooch on his forehead. “OAT” is what she calls him for now J. But no surprise to us, she is just the best big sister Oakes could ever have.
Finally, the genetic testing. Not all of it is completed yet and we still have a meeting with the geneticists in 3-4 months, but every test they have done so far has come back negative, which is good, we guess. We thought that getting the negative test results in October was good news. I guess it was then and I guess these are now, but it doesn’t take away that there could be something potentially looming, waiting…. So Becky and I are trying as best we can to take one day at a time as tough as that is. We’ve heard so many touching stories the last few weeks about other families that have been through similar things or even much worse. All of the stories and words of advice are really helpful as we struggle through how to deal with this.
Ok, that’s it for now, sorry for the long update. We’ll do our best to keep you posted. We’ve got some incredible pictures lately that I’m sure will end up on the blog soon. Thanks as always for everyone’s notes, thoughts, prayers and help throughout these last few weeks (sorry if we’re slow to respond or if we haven’t responded at all). Getting Oakes home with a repaired heart and trachea is an incredible miracle and we’ll be forever grateful to everyone for helping pull him through.
Greg, Becky, Isla and Oakes
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