Double Aortic Arch Repair Pt. 2 {Seattle Children’s Hospital}

posted in: Apollo, Special Needs | 35

You can read part one here.

If you’ve had a child have surgery before, you know that moment when you hand them to the anesthesiologist and put your trust in them is difficult. I gave Apollo a kiss, and we walked to the waiting room. Once he was taken back, it was not as bad as I anticipated. I knew Apollo had to have the repair done and I knew people across the world were praying for him and thinking of him. We felt every one of those prayers in the peace that surrounded us. Chuck and I ate lunch in the waiting room. We talked. We tried to read (though neither of us made much progress in our books). At 2:30 we were told they had just made the incision. Yes, it took an hour and a half to intubate him, put the block in, position him, etc….

At 4:00 exactly the surgeon came out to talk to us. She told us everything went just fine. She was able to separate the arch and cut the ligamentum. I asked how much improvement there was in his airway and esophagus and she said, “It did open up, but I can only see one side”. Of course…funny, I am so used to seeing diagrams and models, I somehow pictured them being able to have a 360 degree view…anyway, he did have fluid in his chest so they had to put in a chest tube but he was able to be extubated in the OR.

Since he was going directly to the cardiac ICU we got to see him before he was awake. Apollo was lying on his right side. He had a chest tube under his incision (held in place by a couple of stitches), an arterial line in his right hand, an IV in one foot, a pulse ox monitor on the other foot and wires all over his chest.

Chuck is reading the numbers on his monitors. 

Chuck spent hours in this chair holding Apollo’s hand as he slept. He hadn’t woke up from the anesthesia yet, so these were the last “peaceful” moments we’d see in a long time.

The photo on the left was my view while I sat on the sleeper couch and Chuck held Apollo’s hand.

That first night can only be described as, I’m sorry, hell. Apollo was in so much pain he was practically crawling of his skin. They gave him a morphine drip, which didn’t manage the pain. So they gave him more morphine. Then Ativan (to calm him) then something I forgot the name of but it was similar to ibuprofen but much stronger.  Then more morphine, more Ativan, more of the other drug and so on…his breathing was very, very labored. His chest was heaving as he retracted. He had air trapped in his subcutia and it looked like he had a trap door on his side flapping open and closed. When he cried his heart rate shot up and his oxygen level dropped. They would give him more drugs and he would sleep for a bit, then he would rouse and cry and the cycle would start over again. His surgeon told us she didn’t think the block had worked very well.

Apollo’s first words out of surgery were, “don’t do that” to  a nurse. Then he asked for Enoch. Then to go to “Donald’s House” and finally, to go see Simon. He was desperate to leave.

In the morning I was able to try nursing him. This required the nurse and Chuck assisting to get him out of the crib. We lay him on his right side (since the incision was on the left), but that’s where the arterial line was, so it was painful. Like I said, his chest was covered with wires and both feet hooked up. When we finally got him into position he latched on…then cried with pain because his throat was sore from being intubated. Eventually he fell asleep and I held him like that for several hours.

At one point Apollo woke up crying for Enoch. We propped up the photo book I had made and he lay there holding Chuck’s hand and gazing at the photo. It was sweet and heart wrenching at the same time.

Apollo fluctuated between napping and periods of being awake throughout the day. At one point a dietitian came in asking me why I hadn’t fed him yet…Umm, really? Because nobody suggested I feed him or brought me any food…

Chuck feeding Apollo.                                                    Morning rounds.

Eventually they brought Apollo some food and he ate: a popsicle, jello (a first for him), scrambled eggs and some waffle. He also drank some apple juice. He didn’t choke once. I can’t remember the last time he’s eaten without choking on his food!

We had another long, horrible night that I’d rather not remember…crying, pain, more and more medicine…

In the morning we put some clothes on him so he would feel a bit more normal and a bit less vulnerable. Apollo’s chest tube and arterial line came out Friday morning. His stomach look fat here, but is actually distended from air and from poo (he hadn’t gone since Monday).

This photos are what I call: too much oxycodone and too little sleep. 

By Friday, the only thing they were doing was managing pain, since he was able to control it with oral meds, the decision was made to send us home!

While waiting around my friends Sarah and Hilary came for a visit. Sarah had a child with a clinic visit that day, so Hilary hitched a ride so they could see us.

One finally check by Apollo’s cardiologist, and he was free to go.

We headed back to the Ronald McDonald House to clean it and pay our bill, and let Apollo play for a bit. We gave him one final dose of pain meds and he slept all the way home.

 

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35 Responses

  1. Thank you so much for continuing to share Apollos story and now recovery with us.
    I hope Apollo is no longer in great pain,and that he is much more comfortable.
    Hope your all getting some much needed rest too. x

  2. I am so happy the surgery is over and you are HOME!!! Can’t write much….wearing a new baby and feeding at same time.It’s odd when we got the call there was a baby for us I told Brad I felt that this was a good sign for Apollo…not sure how us adopting on a moments notice in St Louis, MO and Apollo’s surgery are related…maybe a new life and a “new life” for Apollo…I don’t know.

    All that pain. Heart wretching! I bet they gave him Torodol. They sometimes compare it to Motrin but it is as strong as Morphine , but non narcotic….usually it helps better than the narcotic if that doesn’t help. I hope he is eating better. I bet he gains weight.

    I will touch base more when we get back to MI. We are Blessed to have been referred to stay with this nice Christian family who is only charging us $50 a night to stay in basically their house. They stay in basement. They house anyone who needs it.wow.what a blessing. 4 kids 6 and under was not working in a hotel.Awful.

    Prayers to you!!!! I am so relieved surgery is over. Nothing compared to what you feel. Here we are going to pick up baby and Brad kept saying “when is Apollo’s surgery?” I never thought a friendship could be built on the web. I stand corrected:)

  3. I love the picture of him with the photo book. That is such a special bond he has with his big brother.

    Our prayers continue for you and your family.

    Welcome home Apollo.

  4. I am SO glad that everything went as well as it did! I was at work at another hospital in Seattle but was thinking about / praying for Apollo and all of you all day. Thanks so much also for the great updates.

  5. Thank you for sharing about Apollo – so glad he is ok. Hope his recovery goes smoothly – still praying for you all.

  6. so happy to get the update, thank you. i am praying this little guy will be able to now live a pain free life. to be able to eat anything he wants, to gain weight and most of all sleep all night!! mercy…what a journey you all have been on.
    most of all i want to praise God for his mercy, comfort and healing of this precious babe!

  7. Thank you for sharing your courageous story. What an ordeal for this little champ and for you and Chuck and your whole family. I’m looking forward to seeing pictures of a healthy Apollo romping around your beautiful yard with his beloved Enoch. I hope this week goes well and that healing and rest rule the days.

  8. Missy Steiger

    My heart was breaking and I had tears in my eyes as I read about his pain and what you and Chuck have been through. I have been praying for him and your family. I am thankful that all went well. God bless and a speedy recovery and please tell Apollo I said I am continuing to pray for him!

  9. I am so sorry that Apollo had so much pain. I hope now that he is home he is comfortable and you are seeing a difference. What is the follow up for him?

  10. Debbie Lutz

    So glad to hear that the surgery was successful. It sounded like a very trying time for all three of you. Praying for a quick recovery and that there will not be any complications. God bless!

  11. WOW! 3 days and you are home. God is so good!. What a wonderful miracle modern medicine can be. Hope you are starting to get more sleep as you continue to walk this new walk. I am still praying that Apollo can now eat as a normal little boy should and that he can SLEEP like he should so that you guys can sleep as YOU should!

  12. bernadette

    My whole household has been eagerly anticipating each new post to find out how Apollo is progressing. We are all thrilled with his early release and continue to pray for a trouble free recovery. It is so much easier to recoup (everyone involved not just the child) at home and the other kiddos must be so relieved to have everyone at home. Try to relax a little and dont rush back into the everyday race against the clock, it will all still be there tommorrow 😉
    The photos of your journey have made it very personal to your followers and your little man has touched many hearts, he is simply gorgeous 🙂 Your a very blessed lady Renee to have such a wonderful husband, i really admire dads that are both supportive of their wives and hands on with their kids. i too am blessed with a big hearted fella and i truely believe with him to help shoulder the storms (and of course the good lord) there is nothing we cant accomplish. xo

  13. thank God!! i have been praying for Apollo & your family! God is soooo good. i think you guys will now see a different child & your sleepless nights will be over soon.
    Continuing to pray & appreciate you sharing your stories with us!
    Wendy

  14. These pics are brilliant:
    1) the one of Chuck holding his hand (black and white one) made me cry
    2) the one of Apollo looking at the photo of Enoch….made me cry
    3) the one of the Docs’ legs is sooooooo good. So full of your feeling for the process.

    I’m so glad everything went well. I don’t really believe in an interventionist God (not to take the words out of Nick Cave’s mouth) but I was praying as if I did. I’m so happy for you all that you are home and he is getting better.

  15. Thank God that everything went so well. I know that it must have been so hard to see Apollo in so much pain. I cried a couple of times, seeing all the photos and I’m so grateful to you for all of the updates. I will continue to keep Apollo and all of you in my prayers and hope to see a healthy, happy little boy running around before too long. Try to get some rest now, as Apollo starts to rest better himself. You’ve both been on a lomg, hard journey with your dear little boy and now, hopefully, life will become more normal with each passing day. Love to all of you. – Mary

  16. So glad things went so smoothly and that you’re home now! Are you seeing a difference in his eating? Are you getting some rest?

  17. I can’t imagine how awful it is to see your child in such pain. I’m still praying for all of you!

  18. Apollo and your family have been in my prayers. As a RN, I know very well what those nights of h*** are like for families. Apollo is so blessed to have such devoted parents. Thank you for sharing.

  19. Praying, praying, praying!

    Love in Christ,
    Susan

  20. It is SO good to hear that the surgery went well, and you are safely home. Still lots of recovery I know, my heart goes out to you as I think of you caring for him those first two painful nights xxxx
    But my heart soars for Apollo too Yay Go Apollo!

    With my love, and continued prayers for him and you and all your family xxxx

  21. i surfed over here through bridget’s site.

    a year ago, i had a child in the picu at uc davis medical center with an unknown respiratory ailment that had jut wreaked havoc on his lungs so all the pictures with wires and numbers for vital signs are more than familiar to me. (mine was also a preemie so you could say i’ve had a few doses of this.)

    glad apollo is doing well.

  22. So you’re done? Do you know if there are more surgeries in his future, or potentially continued health problems? I’m so glad the surgery proper went smoothly. That pain killer/agonizing post-surgery pain stuff is pretty typical, sadly. Lucy had a pre-surgery Versed freak-out and left my arms screaming on her way to surgery. You just have to let it all go to God and take a deep breath… but I suppose that’s life, isn’t it? I wish you all a speedy healing!

  23. Hi, I’m friends with Nicole Stol, I believe that Apollo had surgery last week, right after baby Josiah. We’ve been praying for Apollo as well, poor little Josiah is still in the hospital and making slow progress. We’ll continue to pray for your little guy, and for grace and healing! Bless you!

    • bakersdozenandapolloxiv

      Jenni, thank you. Yes, Apollo had surgery right after Josiah and their rooms were right next to each other. Thank you for your prayers. I am also praying for little Josiah. He (and his family) have been through so much!

  24. […] Yes, it truly has been six weeks since Apollo’s heart was repaired. […]

  25. […] 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 […]

  26. […] I handed our 20 month old son over to the surgeon we had just met the day before. Apollo was having his first double aortic arch division. We had no idea what to expect. We paced the waiting room of Seattle Children’s Hospital, […]

  27. It is amazing to see a scar identical to my own! I underwent a similar surgery at age 3 for a vascular that was constricting my esophagus. The incision and tube’s entry point are still visible. I hope that your son continues to heal and receive the support he needs. God bless!

  28. […] the Dr. M. He knew Apollo’s entire history. He had read the report from the bronchoscopy and double aortic arch division. This may seem minor, but believe me, I’ve run into plenty of doctors who barely knew if […]

  29. […] to Texas was like a long, never-ending nightmare. The ridiculously long wait for a diagnosis. The first heart surgery that was supposed to fix him. The feeding tube. The crying, the weight loss, the lack of sleep, the […]

  30. […] hindsight, I believe that fact that he was still recovering from major surgery and was unable to take in adequate calories contributed to the long recovery […]

  31. […] years ago today we handed Apollo over to a surgeon we had only met the day before, trusting she would fix our son. We were told this was a one time […]

  32. […] yes, I’m angry that the original surgeon not only didn’t fix his vascular ring and arguably made things worse, that is not where my current anger is focused. At the moment I am angry at the doctors, the […]

  33. […] March 7: First double aortic arch repair. […]

  34. […] smaller, thicker scar is from his first heart surgery. The thinner, longer scar is from his second heart surgery. The small, circular scar (only visible […]

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