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Double Aortic Arch Division {One Year Later}

texas children's hospital, double aortic arch, double aortic arch re-operation, vascular ring, feeding tube

One year ago today, after traveling thousands of miles to another state, we handed Apollo over to a new cardiothoracic surgeon. A surgeon who told us that he didn’t know what he would find when he opened Apollo’s chest because the notes from the original surgeon didn’t “jive” with Apollo’s anatomy. Dr. M told us he was confident he could free Apollo’s esophagus and hoped to repair the left subclavian artery that had been clamped by the first surgeon.

We were scared. We were angry. We were nervous. We were numb.

We had no choice but to put our trust in another doctor.

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The surgery went went well. Aside from a bit of a scare when they first intubated him, there was no drama. The left subclavian artery was rerouted first. The diverticulum compressing his esophogus removed. The surgeon told us Apollo’s esophagus now “hung free”. He cleaned up some scar tissue and closed him up.texas children's hospital, double aortic arch, double aortic arch re-operation, vascular ring, feeding tube

Apollo spent two nights in the intensive care unit.

Once again his pain was uncontrollable. His epidural didn’t work and the doctors couldn’t give him enough medicine to relieve his pain. He had his own pain team (thank you, Texas Children’s) who worked tirelessly to give Apollo some relief. They tried more drugs, new drugs, different drugs. They didn’t rest until he was feeling some sort of relief. They continued to check on him, even when he was in a normal room on the cardiac floor.

texas children's hospital, double aortic arch, double aortic arch re-operation, vascular ring, feeding tube

This was the last feeding of Bright Beginnings Soy Formula that Apollo would have for months. He developed chylothorax as a complication of the surgery and had to go on a completely fat-free diet. He vomited the new fat-free formula every single day he was in the hospital.

texas children's hospital, double aortic arch, double aortic arch re-operation, vascular ring, feeding tube, chylothorax, chyle

See that grenade looking thing hanging off of Apollo’s shirt? It was connected into a large tube, sunk inches into his chest and held in with several stitches. That fluid you see is chyle leaking from his injured lymphatic system (chylothorax). The container drained the fluid from his chest and was emptied every few hours.texas children's hospital, double aortic arch, double aortic arch re-operation, vascular ring, feeding tube, chylothorax, chyleThat bright-eyed smile is what Apollo looks like on morphine. I wish I were joking, but I’m not. You can also see the scars from the central line in his jugular vein. It was held in with three stitches.  Cardiac surgery isn’t for the faint of heart.

texas children's hospital, double aortic arch, double aortic arch re-operation, vascular ring, feeding tube, chylothorax, chyle

There are not adequate words to describe what it is like to see your  two-year-old son’s back look like this…texas children's hospital, double aortic arch, double aortic arch re-operation, vascular ring, feeding tube, chylothorax, chyletexas children's hospital, double aortic arch, double aortic arch re-operation, vascular ring, feeding tube, chylothorax, chyle

Chuck stayed in Houston until Apollo was out of the ICU and stable, then headed back home to our other children and back to work.

texas children's hospital, double aortic arch, double aortic arch re-operation, vascular ring, feeding tube, chylothorax, chyle

texas children's hospital, double aortic arch, double aortic arch re-operation, vascular ring, feeding tube, chylothorax, chyle

Tilly stayed in Texas to help me with Apollo. We had to buy our own meals on a different floor of the hospital and Apollo’s frequent vomiting (often on me) meant Tilly was doing laundry (on yet another floor) everyday. Sometimes twice a day.

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We did our best to establish a daily routine in the hospital, including showers, getting dressed (Apollo felt better in his own clothes), tidying our room, and endless walks around the cardiac unit.

Apollo was released on day ten after surgery. We had to spend another week at the Ronald McDonald House before he was cleared for travel home.

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One year later Apollo is much better. He is still tubefed but he has the capacity to eat anything now. He has even been cleared for dairy! He is no longer at risk of choking every time he eats. His breathing is better. His left subclavian artery that has been rerouted functions again. The blood pressure between his four limbs has evened out.

texas children's hospital, double aortic arch, double aortic arch re-operation, vascular ring, feeding tube, chylothorax, chyle

I follow the Ronald McDonald House Houston Facebook page and see pictures of kids we met who are still there.  A year later. And his friend KJ, pictured here in his wheelchair? He died last month. He was his parents only child.

Having a sick child has changed me forever. Never, ever, will I take my children’s health for granted.

Life is full of suffering. And there is nothing worse than watching your child bear the pain you would do anything to take away.

 

 

 

11 Comments

  1. Henna // HENNA BLOSSOM blog

    Renee! This is such a touching post. I was holding my breathe and wow, so many tears. Sending so much love to you and your family. It’s so heartbreaking when children deal with sickness and especially if they don’t get better…and I know that you have personal stories, such as KJ. A little two year old boy in a mom’s group I’m part of passed away recently and it has thrown me so much. Yes, you just can’t take health for granted. Thank you for this post. I can’t believe it took me until now to find your blog. I recognize your name from my fb blog page and I just connected it today through your post on Mom Bloggers Club. I don’t always keep up with posts there so I know I miss many. I’m so inspired by you as a mother to 14 and your creativity and strength! I’m so glad that you commented today. I’ll be following! 🙂

    • bakersdozenandapolloxiv

      Thank you for your comment, Henna. And thank you for sharing about the two year old in your mom’s group. These things always seem like they happen to “other people” but we sometimes forget those “other people” are families just like us.

  2. Abigail Wilson

    I cannot believe its been a year. Thank you for sharing your journey and Apollo’s daily struggles so honestly. I count meeting you all as part of the odd Miracles that came out of last year. Have you sent that picture of KJ and Apollo to Jane? I know she would treasure it.

  3. Erin

    I’ve been reading for a while, but never commented. This post is particularly touching to me. My son also underwent heart surgery on October 30, 2012 via a thoracotomy (repair on a coarctation of the aorta and hypoplastic arch). He was 16 months at the time and is now nearly 2.5. He is facing another heart surgery to repair his malformed mitral valve which is steadily increasing its backflow and he also suffers from fatigue that no one can quite explain. We try very hard not to take anything for granted and make the most of when he’s feeling energetic.

    • bakersdozenandapolloxiv

      Erin, thank you for sharing that. Amazing that they had surgery on the same day! Interesting about your son’s fatigue. We have been repeatedly told that Apollo’s heart itself is fine (it is the arteries coming off it that are malformed) but he was also declared “repaired” after the first surgery, so we are a bit gun-shy 🙁 Please keep me updated on your son.

  4. Adam Gregory

    I came across this post because I was searching the web for info on DAA. We found out just a few days ago that my 8 month old daughter has a DAA that will require surgery to correct. They weren’t able to preform the operation right away because she has pneumonia. It will probably take place in 3-4 weeks. I am scared out of my mind. I am making myself sick with worry but reading your story gives me some peace. I hope your son lives a long and happy life. Any advice?

    • bakersdozenandapolloxiv

      Adam, I am so glad Apollo’s story has given you hope! One reason I blog so specifically about his issues, is it is difficult to find information online. We have a facebook group for parents with kids with DAA. Please come join us, I am sure you will be able to get many of your questions answered. https://www.facebook.com/groups/339823096046203/

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