Update on Apollo {Chylothorax Mangement}

posted in: Apollo, Special Needs | 13

This photo of Mordecai is a couple of years old, but one of my favorites. 

Apollo had his first post-surgery check up with his cardiologist in Seattle yesterday. Aside from the boy being completely out-of-sorts (he went from crying and crying and crying some more in the waiting room straight into hyper-overdrive in the exam room) it was a great visit.

His lung x-ray was clear! This means we can begin to wean him off of his diuretics. He’s on  two different types and they are making him pee pretty much 24 hours a day and once again delaying the potty-training he is so eager for. The copious peeing is so bad, the other day I changed his diaper, drove to his doctor’s office and by the time we got there 30 minutes later he had soaked through his diaper, jeans and shirt!

Because chylothorax is potentially life-threatening we have to be extremely careful as we wean him off  the diuretics and eventually add in fat. Today I stopped giving him the first medicine, Thursday we begin giving him the second medicine only once a day, Saturday we stop giving it to him entirely, and Monday he needs a new chest x-ray to see how his body is responding. If all is well, we can begin adding in small amounts of fat and checking, by x-ray, to make sure his body is handling the fat. Such a long, tedious, x-ray filled process. *sigh* at least it is progress.

Apollo has lost a pound and a half since his surgery October 30th (if you look at the photos from Sunday you can see his little ribs poking through and his skinny little arms). Not surprising given his non-fat diet, but discouraging. Every ounce he has gained has been hard fought. His BMI is now down to 13% which put him in the very underweight category.

The other great news is that the blood pressure in his arms has evened out! The cardiologist called it “an excellent repair job”. His body is taking over where the surgeon left off, by rebuilding and repairing his vessels and arteries! Thank God for marvelously made bodies that can repair themselves.

All in all, a great visit.

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13 Responses

  1. I love hearing good news! The weight loss stinks, but if that’s the biggest complaint at this point, I’ll take it. Hooray for Apollo! Thinking of all of you.

  2. Wow! 100% great news. Go Team Apollo!

  3. Jeanne Teed

    Answered prayers!!!!! So happy for you and your family.

  4. What a great report. Praying as he continues to get checked out and that he will easily gain the weight back.

    LOVE your new header by the way…

  5. God has made us so strong & yes, easily repairable! I am so glad to be reading these wonderful posts on his recovery!

  6. Two thumbs up!!! So happy to hear it!

  7. WOW! That is AWESOME news!! Praise God!!

  8. So great to hear a good repot. YEA! And I love your header pic. It is adorable.

  9. Wow, that is great news! So happy for you all to be on the path to a better quality of life for your little guy. Praying that all goes well with weening from the meds and adding some fat back into his diet. And ditto the other comments on the new header. It’s lovely!

  10. Don’t mean to be negative but your last line bothered me. Bodies that repair themselves? While this may be true in some areas, your child was “repaired” by a skillful surgeon who needs his/her praises sung. Your son’s body could not repair itself, that is why you had to go to Texas!! Sorry, but I work in the medical field and it is not an easy field. People want to complain but hardly ever give us credit or thank you’s for saving their child’s life. I don’t have to save your child, I choose to. A thank you and respect would be much appreciated. So glad he is doing well.

    • bakersdozenandapolloxiv

      Jill, I believe you misunderstood my statement. I phrased it that way because while we were in Texas there was still a huge variation in the blood pressure between the two arms- because the artery was somewhat atrophied. Now that it’s had a month of blood flow through it the pressure has evened out. I wrote: “His body is taking over where the surgeon left off, by rebuilding and repairing his vessels and arteries”. Apollo’s cardiologist told me it was his body taking over and healing itself. I also said his cardiologist called it “an excellent repair job”. Believe me, I am well aware that my son would be dead were it not for his excellent doctors. We sent out thank you notes to each and every one of his doctors after his first heart surgery and plan to do it again this time. If I could do more than say, “thank you”, I would…

  11. Just an FYI – your photography website does not seem to be working. I receive this message when I click the link in your story or in your header “This website is temporarily unavailable, please try again later.”

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