Posted by: Philip Rushton | September 19, 2012

Finding Our New Normal: The post-surgery journey

James has done surprisingly well post-surgery. We were discharged from the hospital on Monday, just four days after his surgery. Last week was a very draining and emotional week. We were bumped from surgery on the Tuesday after a long day of waiting because the first case went long. Thankfully, our surgeon, Dr. Langley, cancelled his conference on Thursday to fit us in right away.

The surgery went really well. We got phone updates directly from the OR. When we got the call that the repair was done and had been successful all the emotions came pouring out. I realized after how extremely stressed I had been leading up to this moment. It has been a hard 5 months. We are dealing with a bit of post traumatic shock I think as parents.

(James in the PICU just an hour after surgery)

The surgeon reported that things went really well. The post-op echocardiograms show normal cardiac function. James does still have some blood pressure issues and will be on meds for the next month. This is often the case as the heart has to adjust to its new normal. There is also some very small leakage through the patch, which is also normal. It will close up after it heals and as the heart tissue grows around it.

We have already noticed a huge difference in James. He is keeping his food down, his breathing has slowed down, we no longer hear and feel his heart pounding (pre surgery his heart rate was over 170), and he is slowly starting to take his food by mouth. Leading up to this he was not able to sustain eating for more than a couple of minutes. He has already started taking many of his meals completely orally, though we do still have his feeding tube until this becomes the norm.

His schedule is a bit messed up and we are taking him off the night drip feeds so he needs to re-learn how sleep at night without food. Eating is still a bit of a struggle but they think he’ll be off the tube in about 3 weeks or so. His wound is healing well and so far there is no infection.

He gets his stiches out next Tuesday and then we head back to Doernbecher on Oct 9 for a follow-up echo and cardiology appointment. Dr. Kelly, James’ cardiologist, is watching to make sure his blood pressure gets better and his left ventricle picks up a normal pace. Right now it is acting a bit lazy as it adjusts.

Thanks again for all your love and support. We really appreciate all the prayers. I’ll be returning to the office in a week or so once we are further along in the recovery – both for James physically, and for us emotionally! It has been really helpful to have this family leave time.


(James’ smile returns just 3 days after surgery.)

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Responses

  1. What a beautiful smile! God is good! The 3 of you will continue to be in my prayers that James will continue to heal and become a happy, healthy little guy that Mom and Dad will be trying to keep up with!
    Love, Carol

  2. I love looking at that smile of James. Amazing how someone so tiny can bounce back so quickly. I hope you and Julie will also bounce back and regain your strength and energy. I look forward to the day that we see you in church – that will be an emotional day for all of us! I just realized I haven’t seen Julie for over 6 months. Can’t wait to give you all hugs. Louella

  3. Giving many thanks to God for such a successful surgery. Will continue to pray for healing for all three of you.
    Dorothy & Everett

  4. I may be in Wisconsin, but my thoughts and prayers continue with you daily. What a wonderful smile! and yes, now you both need to unwind and take care of yourselves as you continue to take care of James and watch him GROW.
    Karen Pickett


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