If medical things mess with you, then don’t read this post. Please, just don’t scroll down because it is really rough. There isn’t blood or anything, but there’s tons of wires and tubes, and I know not everyone is okay seeing that. But for those parents who are preparing for something like this, it’s helpful to see, helpful to understand a little bit more.
July 6, our son Zane had major surgery at Boston Children’s Hospital. It was expected, and we anticipated it for 18 months before we arrived! During the surgery, they took a piece of his small intestine (his jejunum) and cut it out, then moved it up to use as an esophagus, moved and rerouted blood vessels, and then attached everything to the correct place. Once they got in there, they realized that his pectus excavatum (sunken chest) was so severe that it really didn’t leave room for an esophagus, so they had to install an atkins pectus bar (it’s like a Nuss bar, but thinner) to train his chest on how to grow. There were also other things, like taking out part of his clavicle so his esophagus could go through there– because his esophagus is now in front of his trachea, not behind it like everyone else’s. And a rib was removed. And… drumroll please… his spit fistula is gone forever!
That’s a ton of things, and honestly, that barely brushes the surface of what happened in that 14 hour surgery. They wanted to do some trachea stuff as well, but decided that it was just too much to do all at once. And my big disclaimer: I am not at all a medical professional. I love reading medical studies via google, but there’s a 100% chance that I messed up on some of that explanation. If it seems off, then it’s definitely because of my explanation. Over the next few months I hope to learn more about all that was done and really understand it so I can explain it well to Zane in the future. Things move fast during a surgery this major, though, and you can’t really say, “Hold up doc, I don’t know that this is the best.” Nope, we found a surgeon that we trust 100% and went with it. It’s funny– on the little things, I will stop and ask questions and wait sometimes before taking action. But the big things? Nope. Zane has waited 4 years for an esophagus. We’ve waited along with him for 18 of those months, and we are ready. We found the best surgeon, and we. are. ready.
The 14 hour wait for surgery to be completed wasn’t as bad as we thought. It was rough, but we were prepared for 20 hours of surgery, so 14 seemed like a breath of fresh air! We arrived at the hospital at 6am and he was in the ICU by midnight. It’s hard to believe that it was considered fast, but it really was. I have to admit, that morning around 7am, before he was under for surgery, I was a little nervous. I had to keep reminding myself that we had the best surgeon in the world for this kind of surgery. The question I always ask myself in life is, “What happens if we wait?” Well, in this case, there’s no reason to wait. If we wait, he continues to not have an esophagus and can’t really move forward in life. So we don’t wait. We go forward. We have the surgery.
The first morning in ICU this is what he looked like. It was insane– all these machines for this little miracle!
For this surgery, it’s an average of 14 days in the ICU. Zane was there for 4.5 days. We couldn’t snuggle him or hold him– there were far too many wires and tubes. And his little body was so filled with fluids!
But his scar looked so good! And no more spit fistula! 2.5 days after surgery, they removed the vent because he was breathing just fine on his own. He was still so groggy on pain meds!
After 4.5 days in ICU he moved to the regular floor and JoEllen was in town for a visit! Zane loves his JoJo!With all the tubes and wires, Zane hated having anything else on his body, so he wasn’t about to wear any clothes. He like a blanket draped over his tummy only. It was adorable.
And this. Melt. My. Heart.
He was starting to feel better here… and then he didn’t sleep at all the first night in his regular room. He was in a shared room and while it didn’t bother us, it really bothered Zane. Without getting too much into it, I’m 99% sure that some of the things going on were taking him back to orphanage life. There were nurses, medical equipment, confinement, and a few other things that just kind of sent him over the edge. The staff was great though, and once I explained that he had been in an orphanage just 5 months earlier, they immediately made accommodations, and as quickly as possible, they moved him to a private room. It was still a rough couple of days, but over the next week Zane slowly got back to his fun little self!
It was also awesome to have other moms to reach out to. I wanted to get ahead of any future issues, so I talked with a group of moms on Facebook who have kids that lived in the same orphanage. I asked them what triggers their kids deal with and how they get ahead of them. I love how the internet brings people together!After a week, they did a swallow study, and he passed with flying colors! They had also been taking out tubes one by one and after 8 days we finally got to hold him. The human embrace does wonders!8 days post surgery he was able to eat clear liquids and ice cream! By day 12 he was totally off of TPN (where his ‘food’ is actually an IV bag full of nutrients) and fully on formula. Later that day he was cleared to eat whatever he pleased, so we immediately went to the cafeteria and ordered pizza. 🙂
We spent the next 6 days moving him from 24 hour formula feeds by a pump to his regular blended diet. And feeding him by mouth every chance we got!Zane is really getting into photos, and wanted to take this one by himself:Eating ice cream!Eat hard, play hard, sleep hard. You can’t see a single scar in this picture, and his little arms look like their getting a little bit of fat on them. That makes my momma heart so happy!
As soon as Hazel stepped in the hospital, Zane’s demeanor changed. He was nicer, happier, and so happy to have his sister back. She was happy to be back with him too!This was right after we signed the discharge paperwork. These nurses spent many days watching over Zane– being extra kind when he was mean to them when they tried to take his vitals. We are so thankful for all the great nurses we had!
We may or may not have an arranged marriage with these two below. Time will tell.Busting out of this place!! The average inpatient stay after this kind of surgery is 30 days. But Zane left on day 18! We still have to stay around town for a few more appointments, but hopefully this Friday his test will show that it’s okay to go back to Virginia!There’s a great big world out there buddy, and here we go!Thank you Boston Children’s Hospital, Dr. Jennings, Dr. Manfredi, Dori, everyone at the EAT clinic and all the wonderful nursing staff!