Friends and family, it’s been over a month since our last update and I am 100% to blame for the lack of updates. I’ve thought about it a million times but just never got to it. We’re long overdue for an update, especially with the latest news of the day.
For those of you who have better things to do than read my novel here J, please just know that Oakes is having open-heart surgery, again, tomorrow morning around 8am (Saturday, 5/28). Most of you will probably get this during or after his surgery, but we are, again, humbly asking for all of your prayers and thoughts and vibes and good luck charms to help Mighty Oakes through these next few days.
For those of you interested in how we got to here over the last month, feel free to read as much or as little of the following update as you want. Lots of you have reached out lately since we’ve been quiet on the email front, so again, sorry for the delays. Becky has been keeping some updates on her blog and occasionally on Facebook, fyi.
As we noted in our last email, Oakes was going in for a catheter procedure on May 4th. We were told the procedure was to hopefully eliminate the “congestion” around his newly-created pulmonary artery (PA), allowing him to breathe easier and get off of his oxygen. Upon arriving at the hospital, the cath surgeon told us, out of the blue, that he was pessimistic that the cath procedure would solve the issues and intimated that another surgery was likely. Kind of a shock, but after all we’ve been through, we handled the news pretty well. They went in with a cath through an artery in his groin and took the cath right up through the new PA into the so-called “branch arteries” that connected the heart chambers to his lungs and they blew up a balloon in each of the branch arteries, then deflated them and pulled the cath out. The doctor who did the surgery, Dr. Murphy, came by afterwards and showed us actual video of them blowing up the balloons. He specifically didn’t like that the arteries kind of deflated when they deflated the balloons. This is what he thought would happen and was the cause of his pessimism prior to the procedure. That said, the blood flow improved post-procedure. To give perspective, after the procedure, his branch arteries were about 2 millimeters wide while most kids his age could have the same arteries around 4 mm or even 5 mm. The smaller arteries are directly related to the truncus arteriosis which was the heart defect Oakes was born with. For whatever reason, the doctors didn’t believe this would be an issue long-term when they first had Oakes’ chest open on 3/22. The good news coming out of the cath was that the ENT surgeon also did a bronchial exam to check on the healing of his trachea repair. The ENT was what I would call giddy when he came back from looking at the trachea. He said it’s healing amazingly well and he was very excited about that. Oakes’ tongue was tied to the bottom of his mouth (‘tongue-tied’, which my wife wishes I had sometimes), so the ENT snipped that loose as well while Oakes was under anesthesia.
Oakes recovered for a couple days in the hospital and the day he was coming home, his cardiologist suggested we see how he does without oxygen. After an hour or so with his measurements in the high 90s (100% is standard for a normal kid meaning his oxygen is 100% saturated with his blood as it should be), she let him come home WITHOUT OXYGEN! Not only that, but because he had been eating so well, he came home without his feeding tube. All of a sudden we had our little Oakes looking perfectly cute with no tubes in his nose or hanging from his body! Those first few days home, he was a rock star – he ate like his papa (which means he ate a lot), he slept well, he was very aware of his surroundings, he was smiling occasionally and he just looked like a normal baby. We were so encouraged. Life was easier since we were able to go wherever we wanted, in the house or around town, without worrying about tanks or machines. It was very liberating. Oakes’ cardiologist, Dr. Lee, after consulting with several of her peers and Dr. Huddleston, did tell us during his recovery, that he would need another surgery, likely an open-heart surgery to permanently fix some of the congestion occurring between the homograft they inserted on 3/22 and the lungs. She said they want Oakes to grow so they’d target July or so for that follow up surgery. Of course, Becky and I held on to hope that he’d eat so well and recover so great that he wouldn’t need another surgery.
Over the subsequent few weeks, Oakes kind of leveled off a bit. He was pretty inconsistent in how much he’d eat. He was supposed to eat around 90 mL per feeding, 7 times a day. He would eat 40 mL one feeding, then 40 mL the next, then 120 mL, then vomit that all up, then 90 mL, etc. He was vomiting about once a day on average and it got very frustrating for us. During his weekly check ups, he wasn’t gaining the weight he should and he hung out in the 2-3 percentile for weight compared to his peers. This isn’t good for a heart baby. We had nurses coming by the house, nutritionists visiting us and even physical therapists because he favors one side of his neck over the other. But all in all, we were content since we had our baby boy home…unplugged.
So just in the last week or so, we’ve noticed when Oakes gets irritated or while he’s eating, he appeared to be really working hard to breathe. That seemed to be contributing to his lesser feedings because the poor little guy would just get exhausted halfway through eating and pass out. Late last week during a check up, Dr. Lee mentioned that going back on the feeding tube was a possibility because his weight gain wasn’t where they’d like it to be. By this past Monday, the decision was made to put his feeding tube back in when he went in for a check up Wednesday. By Wednesday, they were concerned enough with his lack of weight gain and noticeable elevated difficulty breathing that they mentioned they may elect to do surgery late next week but they’d consult amongst the group and have more feedback by Friday when they wanted him to come in for another check up. His feeding was very strong on Thursday, but because he was burning so many calories struggling to breathe, he put on no weight between Wed and Friday when Beck took him back in for a check up. This morning during that check up, Dr. Lee was very concerned and said that, clinically, he was doing worse now than prior to the cath. She mentioned possibly admitting him then, but didn’t think there was much they could do until surgery. Dr. Huddleston, Oakes’ surgeon for the first surgery, was/is in Italy, but would be back Tuesday so they moved his surgery date to next Wednesday. Dr. Lee told Becky, as her and Oakes left this morning, that if Oakes was lethargic or was disinterested in eating, that she should call the hospital. Sure enough, around 1pm today, Oakes was due for a bottle and wouldn’t take it. We tried two or three times and he was just not taking it. This is extremely unusual. Even in tough times, he’d always take at least SOMETHING, even if it was just 20 or 30 mL. Beck was concerned enough to call Dr. Lee who told us we should admit him in the subsequent two or three hours.
Becky and I brought Oakes in this evening around 6pm and they put us in 7 West, which is the “step down” unit for babies about to go home. Well, within 15 minutes, alarms were going off. Oakes’ oxygen levels were in the 70s, which is a big time red flag. That’s the point at which organs start getting over-stressed. They put him on a little oxygen, then a lot of oxygen and he wasn’t really improving, only getting to the low 80s. Every doctor on 7 West and the adjacent CICU was in our room examining him trying to determine next steps. They talked about intubating him (putting him on the breathing machine), they talked about potential emergency surgery and all kinds of medicines they were going to try.
There was a doctor on duty, Dr. Kehr, who had seen Oakes before, brought us in to the family consulting room to give us the lay of the land. He was good and explained that they were going to go ahead and intubate him immediately and start some medication that would hopefully help ease his breathing. As they were getting ready to intubate him, we were introduced to the other cardiac surgeon. With Dr. Huddleston in Italy, this was our guy. When Oakes was diagnosed in womb, we were told that Children’s was getting ready to bring on a second cardiac surgeon, but that there was only one on staff now, Dr. Huddleston. Well, fast forward to May 27th and here was the other guy, fresh from Cincinnati Children’s hospital and finishing up his 11th day on the job at St. Louis Children’s. I really liked his demeanor. He was very confident in a subtle kind of way and said that this type of surgery was well within his comfort zone. He respected the fact that we’d prefer Huddleston to do the surgery but that it was in Oakes’ best interest to have the surgery now. We told him “let’s get him fixed.”
So that’s where we are now….Beck and I just got home to get a couple hours sleep and we’ll be back at the hospital no later than 6:30am. The surgery will start around 8am and last five to six hours. He’ll be on the bypass machine for maybe an hour during the procedure, so that is good. Likely in the CICU for 3 days and 7 West recovering for 6 or 7 days. Hopefully around June 8th or so, we’ll be bringing a very happy, easy-breathing, smiling baby boy home!
As always, we can’t thank everyone enough for all of their thoughts and prayers throughout these last ten weeks….I will do a better job of keeping you all posted.
Greg, Becky, Isla P. & Mighty Oakes