Double Aortic Arch Repair {Seattle Children’s Hospital}

posted in: Apollo, Special Needs | 12

Tuesday March 6, the day of Apollo’s pre-op visits we woke up to fresh snow. We decided to leave a bit early to be on the cautious side. The roads were sheer ice.  On our way to drop Enoch off with the family he was staying with, Chuck realized he couldn’t stop the Jeep. We glided along in a very controlled manner…then the car ahead of us slowed down and stopped…and we were still gliding. We slipped and slipped until yes, we stopped by gliding right into the bumper of the car ahead of us. I was already stressed to the very limit and this did nothing to improve my outlook. No damage was done and we were able to travel slowly forward but my mood was rather dour.

And then we drove by this truck…and I was able to smile and let go of the weeks of planning, stocking the freezer, making arrangements for the children. It was exactly what I needed to let go of the stress and just get on with the day.

And what a day it was! Our first appointment was at 10 am. We arrived at 9:15 so we killed time  in the cafeteria where Chuck and I fueled ourselves with coffee and Apollo fueled himself with potato chips.

First off, Apollo was weighed (21.4 pounds) and measured. He was examined for any signs of illness. He got a chest x-ray and saw a nurse practitioner. We were told that the surgeon Dr. K (who we hadn’t met yet) was running late because she was doing surgery over at the University of Washington. When she finally arrived we liked her right away. She was intelligent, articulate, and personable. She answered all of our questions and never seemed like she was in a hurry. When I asked how many double aortic arch repairs she’d done she thought for a moment and said, “Either twenty-seven or twenty-eight”.

Then Apollo had a visit with a nurse practitioner who took his history and did a full exam to ensure his health. It was very obvious that there were any number of people who had to declare him healthy before the surgery could be done. This nurse practitioner said, “You wouldn’t believe how many surgeries we have to cancel for the kids with vascular rings because they always have respiratory infections”. Oh, yes, I can believe. Thank God for Apollo’s health and thank you for all of your prayers.

A very long day of appointment after appointment…

Then Apollo had his blood drawn and had an appointment with a nurse practitioner this one for the anesthesiologist. This lady said at one point, “Well, Apollo was so old before he was diagnosed…” referring to the potential long-term damage to his esophagus and trachea. I know it’s completely unreasonable, but at that point I wanted to stomp my foot and scream. And yell. And throw a big old fit like Veruca Salt. So old?! We were seeking a diagnosis for a YEAR. Twelve out of his (at the time) 19 months! But I didn’t. Instead I smiled outwardly and fumed inwardly.

We made our way around the hospital with appointments on four different floors. We arrived at 9:15 and left at 2:15.

What, your toddler’s never had an EKG???

These photos really show just how skinny Apollo is…I usually have him in several layers of clothes since it’s winter and I’m always cold, so I don’t think its very apparent in most photos.

We left with an exhausted boy and a handful of instructions. Apollo needed an antibiotic up his nose twice a day to prevent any infection in his airway. And he needed to be bathed in hibiclens three times before the next day’s surgery.

We headed to the Ronald McDonald House where Apollo was able to play in their spacious playroom. After a day of appointments he loved it. After a couple of hours of chilling we headed to my friend Emily’s house where we had a delicious dinner while decked out in lovely silk capes provided by her four-year old son, Simon.

We left around 8 o’clock and headed to the Ronald McDonald House for a night of semi-sleep. Apollo’s surgery was the second of the day, scheduled to begin at 12:50. We were to arrive and check in at 11:35. Apollo couldn’t eat or breastfeed after 6:30 in the morning. The crazy thing is, the first case of the day was the six month old son of a woman I know from Above Rubies. And our boys, Apollo and Josiah, had rooms next to each other in the cardiac ICU! It was so comforting to see a familiar face.

Apollo knew something big was happening. As soon as we arrived in the parking garage Wednesday morning Apollo started saying, “bye-bye, bye-bye, bye-bye”. And as soon as we walked in the building he “shut down”. It was like he was in shock. He sunk into himself. He didn’t say a word. He didn’t ask for me (Chuck was holding him). He just sat. It was absolutely heart breaking.

The surgeon Dr. K marks the spot on Apollo’s chest pre-surgery.

We did the normal stuff. He was changed into a hospital gown. He got his hospital tags. We met and talked with the anesthesiologist. Along with the normal anesthesia, we agreed to a nerve block, which we were told is similar to a epidural, but they don’t place it in the spinal cord. Neither of us realized before that they actually separate the ribs to make room to do the surgery, so he would be very, very sore just from that.

Apollo’s cardiologist, Dr. S came by just to say hi to us.

The surgeon came in to mark the spot on Apollo for the anesthesiologist. Then we handed him over to wait.

To be continued…

 

 

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12 Responses

  1. Your entire family is ever so brave.Your an amazing mother and Chuck is an amazing father.Apollo made it through his surgery,and time in hospital and home so quickly because of your faith and ability to believe he could do so.
    I am thinking of Apollo and you all.May you continue to be able to be in charge of his recovery at home,and may he come out of it with complete health.x

  2. So glad that the time arrived and grace was given. Been checking regularly to catch when you’d post about! I hope he’s not in too much pain during his recovery.

  3. thank you renee for sharing. praising the Lord for the surgery without event, praying for apollo and his pain and recovery, and your ministering to him and all the other needs in your family. the Lord is your strength!

  4. Children, even very young ones, know much more than we think they do – so great he was not fighting it but submitted to what he knew was the solution to his problems…so great to hear you’re home & that he’s recovering so well!

  5. I’m friends with the family Josiah’s family was staying with. I’ve been praying for both of your families and precious little ones!

  6. I rate enthusiasm even above professional skill.
    Cannibals prefer individuals who have no spines.

  7. […] This, my friends, is an image from the Upper GI Apollo had done in April of this year. The black you see is his esophagus. The esophagus is where your food goes, and should hang straight down like a straw. This is what his esophagus looks like now, after his double aortic arch division. […]

  8. You are a remarkable family! God forbid Apollo ever needs more surgery, but if he does, or even if he does not, I bet he would enjoy very much _Curious George Goes to the Hospital_–in fact, all the Curious George books, but the ones by H.A. and Margret Rey, not the industry of computerized image Curious George sequels that have been produced just because their books were so popular. My children loved those books, and when two of them had to have surgery, I was very glad I had that book to prepare them. Some of the medical procedures in it are dated, but it still gives a good idea of what it is like to be surrounded by strangers in white coats and surgical masks and examined by them. Also, it is hilarious–Curious George naturally gets into lots of trouble, and all is happily resolved in the end.

  9. I know exactly what you went through, my son had double aortic arch repair surgery at 5 months old. We were blessed to have known before he was born I can only imagine what it must have been like to be searching for an answer for 12 long months, best wishes

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