Double Aortic Arch Re-Operation

posted in: Apollo, Special Needs | 13

October 29, 2012- the night before Apollo’s second double aortic arch repair. 28 months and weighing in at 26 pounds.

March 6, 2012- the night before Apollo’s first double aortic arch repair. 20 months and weighing in at 21 pounds.

The Cardiac-Vascular Intensive Care Unit (CVICU) was full the day of Apollo’s double aortic arch re-operation. The surgeon, Dr. M, elected to do the surgery anyway and send Apollo to the Pediatric ICU instead. We were so thankful he chose not to postpone the surgery. In this photo you can see the central line in Apollo’s neck. It was huge and held in with three stitches. After they were taken out he looked like he’d been bitten by a vampire.

So many medicines to try to tackle his pain. This poor boy is hard to manage.

A little boy in a big bed.  Still in the PICU.

Taking a rest after snacking on Cheerios and popsicles. The nurses learned an important lesson with Apollo: never give a cardiac patient a blue popsicle. The first one they gave him left a faint blue tinge around his lips and mouth. It was scaring every nurse and doctor who walked into his room!

Apollo’s first feeding after his surgery. He only had one or two feedings of his soy formula before they noticed the chyle in his chest fluid and switched him to  Enfaport…which he promptly began vomiting up… and hasn’t quite stopped yet.

Apollo had some physical therapists come in and help him sit up for the first time. Not fun after a thoracotomy. He cried and said no, no…it was so hard to make him fight through the pain to sit up and “play”. Initially he needed help and support from pillows.

 Here you can see that even though he’s “playing” with toys, he isn’t having much fun.

After two nights in the PICU we got moved to our own room on the 15th floor! I loved this about Texas Children’s hospital. The 15th floor is reserved for patients recovering from heart surgery, all of the nurses are cardiac nurses and the rooms are all private. Finally I had a bed to sleep in! Or so I thought. Apollo would have nothing to do with me sleeping in a bed two feet away from him. As a result, we shared this bed every night. After Chuck left Tilly slept on the sleeper couch in our room.

Oh, and I can’t even begin to tell you how awkward it is to wake up at 5 am with a doctor leaning over you and examining your child. Then trying to have a semi-intelligent discussion with said doctor as you lie there in your pajamas…

This was the first time Apollo left his room on the 15th floor. Yes, he looks happy…he was also completely drugged up on morphine…

And Elmo came to visit. Apollo’s expression says it all.

The new scar. As you can see, it’s almost  twice the size of the original one. They start out the same, then the new one veers off and up as Dr. M decided to go through the fourth interspace in the ribs instead of the fifth that Dr. K went through. The thicker, lower part of the scar is where the original incision was. Below is a photo of Apollo after his surgery in March.

Here you can see Apollo only has an IV left in his wrist. At this point he was only kept in the hospital because of his chest fluid.

And this is pretty much what Apollo thinks about having his vitals taken every four hours.

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13 Responses

  1. oh my gosh…i pray he never has to have anymore surgery..NEVER. i can’t imagine the pain he had. thankful you are home and pray he will be able to eat, breath normal, play and be an active happy little boy. Also for you to have a normal night sleep too :0)

  2. Poor sweet guy. I’m still praying.

  3. Kathy Barber

    Dear Apollo, my husband feels the same way about having his vitals taken so often. He had heart surgery too, but you are a lot cuter!

  4. So glad you could sleep in Apollo’s bed. And OH SO glad you are home!!!!

  5. Tara Bergeron

    glad you are home. can you handle a phone call? i’ll try anyway. xo

  6. Praying that each day brings more healing and lots more smiles!! Have a blessed holiday!
    LOVE the new picture of the whole family at the top! Beautiful!!

  7. Thank you for the pictures! The kids and I have been praying every morning and night. This helped them see what was going on.

  8. […] Traveling to Houston, Texas for Apollo’s second heart surgery. […]

  9. […] to eat (ideally a texture he eats well and a texture he had trouble with). The thing is, since his surgery last October, he can handle any texture from nuts to raw apples (yay!) with no risk of […]

  10. […] 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. […]

  11. […] Dr. R, was thrilled with his breathing yesterday! The good news is he is much better since his re-operation at Texas Children’s Hospital. Dr. M, really did perform the miracle we were hoping […]

  12. […] Apollo’s heart surgery in Texas, he developed chylothorax and had to be on a fat-free diet for two months. The only chylothorax […]

  13. […] 31st, 2012 Apollo was in the Cardiac ICU at Texas Children’s Hospital recovering from  heart surgery. Adalia called to let us know some friends wanted to take the kids Trick or Treating. Let me let […]

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