2012: The Year of Apollo

2012: The Year of Apollo

posted in: Apollo, Special Needs | 9

Is there honestly any other way to describe 2012 in our family?

In 2012, Apollo has:

* Had two heart surgeries

* Six procedures requiring anesthetic

* Eighteen trips to Seattle (200 miles round trip)

* Two trips to Bellevue (200 miles round trip)

{Yes, I drove 4,000 miles to and from doctor’s appointments last year!}

* One trip to Houston, Texas

* Spent eighteen nights in the hospital

* Four g-tube infections required antibiotics

* Three stitches after falling into our brick hearth.

Here it is, written out, for my own sanity:

IMG_1243_9657 blog

January 18: MRI and diagnosis of double aortic arch.

February 7: Visit to his pulmonologist, first echocardiogram.

March 6: Pre-op day.

March 7: First double aortic arch repair.

March 9: Discharge from hospital.

March 20: Post-op visit to cardiologist. Apollo’s heart is declared “repaired”!

March 26: Visit Bellevue for a sleep consultation.

April 10: Feeding evaluation in Bellingham.  I am told they can’t help him with therapy.

April 20: Visit to on-call pulmonologist in Seattle because of severe laryngomalaciaia causing “squeaking” while he breathes at night.

April 23: Admitted to Seattle Children’s Hospital for testing. I jokingly tell Chuck I’m going to chain myself to his crib and refuse to leave until they figure out why Apollo can’t eat.

April 24: Upper GI and swallow study show severe compression to his esophagus. The doctors suspect it is “a vascular structure”.

April 25: Rigid bronchoscopy, flexible bronchoscopy and CT scan. These tests reveal what we are later told is a “diverticulum” compressing his esophagus. For some reason, at the time, we were told it couldn’t be fixed surgically, but maybe one day, years from now, he would outgrow it.

April 26: Sleep study.

May 3: Pre-op for g-tube placement.

May 4: PEG tube is place so he can finally be nourished and grow!

May 14: Visit to Seattle to check on g-tube.

May 15: Sleep center in Bellevue.

May 29: Visit to pulomonologist.

May 30: Visit to GI doctor.

June 4: Visit to ENT.

July 18: Feeling evaluation in Bellingham. I am still holding out hope he will “learn” to eat. Once again I am told they cannot help him.

July 31: Nutritionist in Seattle.

August 7: After a series of phone calls and email with Apollo’s cardiologist, we meet with him again. “Apollo’s anatomy and physiology are too complicated to discuss on the phone or through email” I am told. At this visit we are told his left subclavian artery no longer works and it is a “complication” to the first surgery.

September 11: Visit to pulmonologist- he suggests we take Apollo out-of-state to be evaluated. Visit to cardiologist where we come armed with a whole new slew of questions. Some have answers, some don’t.  Pre-op appointment for mic-key placement.

September 17: Mic-key is place. Not more 8 inch PEG tube!

October 5: We meet with heart surgeon at Seattle Children’s to discuss possible surgery. We are told Dr. P has never done a surgery quite like this. In fact, they’ve never had a patient at Seattle Children’s Hospital who required a re-operation after a double aortic arch repair!  Dr. P, however, is willing to try to remove the diverticulum. Dr. P tells us he would wait until Apollo was older to repair his left subclavian artery (requiring a third heart surgery!)

{Meanwhile I have contacted the top three Pediatric Cardiac hospitals in the country: Boston Children’s Hospital, Children’s Hospital of Philadelphia and Texas Children’s Hospital. I spent eight hours one day copying and packaging Apollo’s medical records which I send to all three hospitals. In the end, we decided on Texas Children’s Hospital because they have a surgeon who has re-operated on a double aortic arch.}

October 12: Three stitches in his eyebrow. And antibiotics for g-tube infection.

October 23: Chuck, Tilly, Apollo and I fly to Houston, Texas and move into the Ronald McDonald House.

October 24: CT scan and Upper GI at Texas Children’s.

October 25: We meet surgeon Dr. M who tells us that Apollo’s surgery will be his “sixth or seventh” re-operation on a double aortic arch. He also tells us, in 14 years, he has done a total of 30  initial double aortic arch repairs.

October 29: Pre-op.

October 30: Re-operation on his double aortic arch. Dr. M removed the diverticulum and tells us Apollo’s esophagus now “hangs free”. He also repairs his left subclavian artery! WE. ARE. THRILLED.

October 31: We find out Apollo’s lymphatic system has been damaged (a known risk with re-operations on the chest). He has developed chylothorax and will be on a fat-free diet for two miserable months.

November 8: Apollo is discharged from Texas Children’s hospital. We have to stay in Houston for a week for follow-up appointments.

November 14: Last follow-up appointments in Houston.

November 15: Tilly, Apollo and I fly home (Chuck returned home November 4th).

November 27: Follow-up with cardiologist in Seattle.

December 17: Apollo’s mic-key gets changed for the first time.

Here’s to 2013 being year of health and growth!

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9 Responses

  1. Dawn Daly

    Hiya, Rene. Can you tell me what is the diverticulum. I am also wondering why this surgeon had to re operate on som many DAA surgerys, what are the main reasons?
    Best Wishes Dawn.

    • bakersdozenandapolloxiv

      Dawn- Here is a description of a diverticulum of Kommerell
      This is similar to, but not exactly what Apollo had. Apollo’s is apparently so rare there is no name for it. Basically it means he had a section of his aortic arch that was filled with blood and pushing on his esophagus. The ENT said they could see his esophagus pulsating when they did his bronchoscopy!In Apollo’s case, they remove the “pouch” then connect the remenant of artery somewhere else.

  2. Wowzers!!!

  3. You may already know this, but you can deduct miles traveled for a dependent’s medical procedures, as well as costs e.g. hotels and meals. I wouldn’t call this a silver lining, but at least a tiny bit of good news!

  4. Dawn Daly

    Hiya,
    Thank you, I just read the whole paper from that link. Dawn x

  5. Wow, that has been quite a year. I pray that 2013 can be a year of healing for Apollo and the rest of your family.

  6. I’m so wishing you and yours a healthy, happy 2013! You deserve it. 🙂

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