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Update on Apollo {September 25}

Where to begin…let me just say if I would have known six months ago, as I watched Apollo writhe in pain after his double aortic arch division, that we would have to re-do the whole thing, I don’t think I would have survived emotionally. He was in so. much. pain. And it was uncontrolled. His spinal block didn’t work and no matter how much medicine they gave him he was still in pain.  

So far I have sent Apollo’s relevant medical records to Boston Children’s Hospital and Children’s Hospital of Philadelphia. I have spoken to someone on the phone at Children’s Hospital of Texas twice, but still haven’t got the contact information for where to send his records. {And literally, as I was typing that sentence, I got a call from Texas with a sincere apology that they hadn’t returned to call sooner.} I will be heading out to overnight his records to Texas later today.

I’ve heard back from Boston, but am still waiting to hear back from CHOP. The doctor in Boston believes he has a Diverticullum of Kommerell. Our local  cardiologist doesn’t believe what Apollo has fits that exact definition. The doctor in Boston also believes Apollo has scar tissue from his original surgery that is now compressing his esophagus and trachea. This makes complete sense to me, since his eating seemed better just after surgery, but a mere six weeks later we were in the hospital getting a feeding tube put placed. His breathing is also  worse that it was, say, three months ago.

Chuck and I have noticed it slowly worsening…A month before his September 11th visit to his pulmonologist we doubled his reflux medicine to his pre-surgery dose. He had begun coughing again and his voice sounded raspy. The medicine has lessened his coughing, but his now always sounds raspy. I’m not sure why I was so surprised, then, when his pulmonologist told me his breathing sounded worse. That verified what we had been seeing with our own eyes. I guess that’s where denial comes in. In looking back over all the bad news we’ve received from doctors this year, it never seems quite real when we’re in the room with the doctor. I guess my mind goes into a very calm, logical place. A place where I can ask intelligent (we hope) questions and absorb the information.

The fear, the shock, the sadness all come later for me.

As his cardiologist says, his post-surgery anatomy and physiology is “complex”. No one knows one hundred percent what is going on inside. We know he still has compression on his esophagus and trachea. We know his trachea is floppy. The doctors believe he still has a fiber or diverticulum that needs to be removed. We know his left subclavian artery no longer works. We know he is drawing the blood supply to his arm from his head and brain.

And we know he needs to be re-operated on. His cardiologist has said we could “wait and  see” what happens. But his pulmonologist is advising us to get the re-operation done “sooner rather than later“. And Chuck and I know. We can see his breathing getting worse. His sleeping getting worse.

So we wait, wait, wait. Hoping to find a surgeon who has re-operated on a double aortic arch before. It is just so much more complicated this time around, with scar tissue and his subclavian artery.

23 Comments

  1. Melissa Knox-Raab

    Have you considered–as a supplement to whatever seems medically necessary–Traditional Chinese Medicine? When it works, it works very well, and the chances of side effects are extremely slim.
    NYU is said to have a good Department of TCM.

  2. Angie

    We are keeping Apollo and all of you in our prayers. He looks simply wonderful in these last several week’s of pictures. It is shocking to hear that he is getting worse again. You are wonderful parents, hunting down every possible avenue for solutions to Apollo’s problems. So much stress for all of you. Keep yourselves well as you work to keep Apollo well. You are wonderful parents doing an outstanding job with all of your children. With love

  3. Jo

    As usual, I find myself mentally helpless with absolutely no good answer, while still wanting to leave a comment. I cannot provide comfort, or reassurance. What is there left? I am praying for you, that is all that I have. sometimes when I read your posts, I cry, I do not know how you feel and sometimes that makes me feel worse. That seems lonely. all I can do is pray.

    • liz

      I agree. To write these posts you have to have some degree of detachment or “denial” as you have put it. I often wonder if it hits you in moments and you break down or if you just soldier onward. No need to elaborate on this..but as a blog reader it does leave some wondering of “wow …how is Renee doing?? Chuck??”.. I am sure it is difficult to slow down and “go there”..I tend to just push forward.doing the next step..what needs to be done..not negating that something positively awful is going on..but that the best thing is to keep keeping on….I imagine, but of course you only know, if this is also how you operate.

      I pray that someone who knows someone reads this blog..say an RN or Dr at a hospital who knows a Dr who does these surgeries…this blog has brought you so much..I believe it can still help provide more

  4. Wendy

    there are no words except “we are praying.”…and we are. your sweet, beautiful boy…is just that beautiful. everytime i look at your blog I am amazed by his precious appearance. He looks so much healthier & happier then he did without the feeding tube. I know God is a good god & He loves Apollo very much. We are believing in God’s divine hand to lead you & Chuck as you seek answers & the right path to take for Apollo. Much love & prayers are being sent your way to you, Apollo & your whole family.

  5. Nicole

    Yea, though I walk through the valley of the shadow of death, I will fear NO evil: for thou art with me (Psalm 23:4). Our Father is able to do so much more than we can ask or imagine. He will bring you through will super natural peace. As you wait…we continue to pray!

  6. letti

    I have been silently following your journey for a while now, and am always amazed by your family’s strength. I pray that the Lord guide the doctors who will be working with your family and Apollo, and that we continue to have faith in the Almighty Healer.

  7. Kristine

    Geez, Renee. I’m sorry. This stinks. Thanks for keeping us updated this way. Will pray for your son. I’ve missed keeping up with you in person the past few months. 🙁

  8. Nena Johnson

    I hope we are able to connect when Reese and I are in Seattle. Would love to give you a hug (if you are a huggy kind of person if not, a hand shake) and meet that little wonder-kid of yours (although all of yours seem to be pretty amazing).

    Sending you much peace. Nena

  9. Jean

    It’s worth a shot to try Yale New Haven Hospital. They are excellent for many things. I found this online. It opens in pdf format. http://ats.ctsnetjournals.org/cgi/reprint/26/1/86.pdf My sister works at the hospital and has been there for close to 30 years. I can tell her to put you in touch with the head of whatever department you need. It’s really no bother so don’t be shy to ask. Email me if you would like any help.

  10. Katie

    Saw this article today (friend posted it on Facebook) and it made me think of you, in several regards. Now, after reading this recent post, I am so glad I saw it and hope it is somewhat helpful. I know it doesn’t address anywhere near the situation you and Apollo are in, but again, I still hope it’s somewhat helpful. Also, as I do believe this particular doctor is at Boston Children’s Hospital, I thought it would be worth sharing as I recall that being one of your options/hopes and see that it is from your post.

    http://commonhealth.wbur.org/2012/09/doctor-says-it-wont-hurt

    If you have any trouble getting the link/article to come up, please let me know. It’s very interesting. As others have said, will be praying for you all.
    ~Katie

    • bakersdozenandapolloxiv

      Interesting. I honestly can’t imagine any doctor spending that much time with a kid *just* for stitches…amazing.

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