Surgery (post 1)

The actual purpose of our trip to Sydney was to visit a thoracic surgeon. My son has a severe pectus excavatum which requires  a surgical correction. Basically, his ribs and sternum are growing in toward his spine. At the moment he has about an inch between his sternum and spine. This has caused his ribs to touch his heart and push it to further to the left. He has a greatly reduced lung capacity. The human body is a very clever thing. It may just be that his organs adapt to the shape of his rib cage, but it could also be that later in life he has heart problems caused by the stress of this condition.

(This bit will be a bit gross, just warning in case you are squeamish)

To correct this my son will have a surgery called the Nuss procedure. A metal bar will be contoured to the correct shape for his chest. This will be done the day before surgery, then the bar will be sent to be sterilised and prepared for surgery. During surgery a small incision will be made each side of his ribs and a hole drilled through his ribs. The metal bar will then be threaded through, under his bones, avoiding his heart, lungs and major arteries. Once the bar is right through it is literally just flipped – forcing his ribs to take the correct shape. His bones will go from concave to convex in one flip of the metal bar. A camera will then be used to make certain that the bar is in the right place and that no damage has been done to any other internal organ. A three inch long section of the metal bar will extend outside his ribcage on each side of his body, just underneath the skin. This will be curved to the shape of his body and fixed to his ribs to secure the bar into place.

This is going to hurt like all holy hell. At the moment his ribs are mostly cartilage in the front of his chest. They don’t set into bone until he has finished growing. This makes it the ideal time for the correction surgery and less painful than if he had already set bone. Despite saying that he will require serious pain management. He will spend the first four days after surgery on an epidural. He will then be transitioned onto strong pain killers. It will take about six weeks for the bones to settle into their new positions and he will require some measure of pain management for the duration of that process.

You can see why it was so important to us to find the right doctor. It is a major surgery and a life-shaping moment in my son’s life. We LOVED the surgeon in Sydney. He was kind and immensely knowledgable. He listened and answered questions, he provided mountains of information. We feel quite secure about allowing him to touch our son. He wants to do the surgery right away. Initially he said next week, but we need to get our daughter off to France first. We have booked our son into the Westmead Private Hospital for surgery on the 22nd of January. My son commented afterwards that he preferred to get it done quickly. I can appreciate that- the longer you think about something the worse it becomes.

So in just over a week we return to Sydney for about two weeks. We take our comfortable, happy boy and subject him to pain. It is the right thing to do. The long term benefits far outweigh the short term pain. I would take this surgery for him if I could. I would bear this pain for him if I could. All I can do is hold his hand and provide him comfort. I have written about the surgery in a very matter of fact manner because I need to be in control of all of the  information. I cannot be in control of anything else. I will hold his hand and I will be his advocate, but I’ll cry for my baby every night.



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20 responses to “Surgery (post 1)

  1. Not losing sight of the long-term outcome is the thing that will keep you going. You will both get through this because that’s what being a Mum is all about. Your son’s bravery will astound you and it is that that will also make the next few weeks bearable.
    I will be thinking of you and will be keeping up with your news.
    Good luck to you all!

  2. If the tears will help any, I shed a few just from reading about it. How terrifying for you both. You are both very brave. I’m glad he will have an epidural, speaking from experience they are excellently good at blocking godawful pain.

    The picture is divine, by the way.

    hugs Caroline x

  3. Sue

    I am just amazed at what the medical world can do. I am so happy for you that you found a dr that you are totally comfortable and happy with. It’s going to be a huge few weeks for you all, watching you daughter fly off on a trip of a life time and having the big op in Sydney. I will be thinking of you all.
    Sue xx

  4. twolimeleaves

    This will be hard, I know. You guys are fully equipped to handle it, so do not fear.

    Pip, will you be changing your name to Steve Austin Petersen?

  5. Yuck, Yuck, Yuck! Poor pip… and poor mum. I too, am an information freak. Rob made fun of me and my pregnancy, infant and toddler books. But having knowledge makes me feel like I’ve put on armor in some way. I’m not one to sit idle and feel compelled to DO something in these situations. You know of course that I will be thinking of you and Pip. Tell him that if he wanted drugs, they’re selling them on street corners. He didn’t have to go have a medical problem to get them. And don’t let Sussanah in your house while he is recovering… you might find some of them missing. I’m sure she will have “sympathy pains” that require meds. 🙂

  6. Oh my. That sounds like quite an operation.

    No wonder you feel you need to control the information – I would need to do that too.

    So glad you have found a doctor you love. I’ll be thinking of you all on the 22nd.

  7. (((HUGS)))

    Oh my Tracey. You have one very brave boy. You are all very brave. You know we are here for you and we’re all thinking of you. You’ve got a couple of emotional weeks coming up…

  8. riseoutofme

    So glad you found a doctor that you have total confidence in … but Lord you have a tough couple of weeks ahead of you … you and Pip … I hope and pray that everything goes smoothly with the operation and the recovery … I’ll be thinking of you both and wish you strength and love in abundance.

  9. You are so strong, as every mother must be!

    Isn’t amazing what medical science can do? You and your family are in my thoughts.

  10. I’m glad. Glad the doctor in Sydney seems promising, glad an approach for dealing with this serious issue is in the works before your young man gets much older. It’ll be rough over the short term, but hopefully greatly improve the quality of his life over the long term.

    I will be thinking of you and your family and hoping the procedure and recovery go as smoothly as possible.

  11. Incredible – what the body can do, and what medicine can fix. Good luck and courage in the coming weeks!

  12. I’ll be thinking of you all over the next few weeks. I’m so glad you found a cool doc. Still, it’s so much for a kid to go through. I’d even take the surgery for him if I could.

    Sending lots of hugs 🙂

  13. I joined Stomper Girl on this size of the Pacific with tears by the end of your post. I am so sorry your son has to go through this and you along with him. It is a relief that you have found a doctor that you have confidence in and that your son is facing his circumstances bravely. This sort of depth in his character will fare him well throughout his life although it is unfortunate that he is being tested on it so early.

    Big virtual {{{{HUGS}}}} are sent to your family.

  14. PS: this is a great photo of your children…

  15. I love your blog and read it often but don’t think that I commeented before today.

    Please know that i will be thinking of you ina weeks time when you come back to Sydney for this very important major operation. i am so glad the Dr has been straight and told you about the pain meds required and it is reassuring that you are confident in the surgeon.

    AND PLEASE if you need anything (even though you don’t know me from Adam) I am only too happy to help – don’t be afraid to ask – us mum’s have to stick together.


  16. I will also be thinking of you all over the next few weeks…shedding tears and sending hugs!

  17. Kamran

    Hope this message finds you and your son well. I was just searching the web for some data on cervical spine for some write up. Then I ran into your post, and I had no idea what I was about to read.
    My heart goes to you and your son, sweetheart– I wish I could do more than offer my positive energy and prayers from North America. Best wishes,

  18. I, and so many others, will hold you in my heart.

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