Here is the list of Harlie's surgeries. As of May 1, 2013, she has had 32 surgeries, with more to go!
09/25/06 - Born at 1:11pm, 5 pounds, 3 ounces, 18.5 inches
09/29/06 - 1st Open Heart Surgery - PA band and PDA ligation and placement of pacemaker leads
10/11/06 - Tracheostomy
10/11/06 - G-tube (peg) Placement (feeding tube)
10/18/06 - Removal of skin tags on both sides of her face
02/19/07 - 1st Heart Cath
03/06/07 - 2nd Open heart surgery - the Bilateral/Bidirectional Glenn (she spent over 9 weeks in the hospital with a chylothorax)
03/08/07 - Tracheostomy re-do (stoma closed after heart surgery - they remove trach for heart surgery due to risk of infection)
06/13/07 - 2nd Heart Cath
08/14/07 - Right Lower Lobectomy and Upper Plication (removed most of her upper right lung lobe and all of her lower lobe)
10/04/07 - Anoplasty
05/14/08 - Nissen Fundoplication and Mic-key Button Placement (a nissen is to stop vomiting and a Mic-key is a low-profile feeding tube)
06/03/08 - 1st Bone Graft Jaw Reconstruction (harvested bone from her skull and placed into her lower jaw to try to extend it forward to bring her jaw out of her airway)
08/05/08 - Jaw wires removed
08/19/08 - 3rd Heart Cath
01/13/09 - Ear Tube Placement
03/31/09 - 4th Heart Cath
04/16/09 - 5th Hearth Cath and Transesophageal Echo
06/08/09 - 3rd Open Heart Surgery - the Damus Kaye Stansel procedure (DKS)
11/20/09 - Ear Tube Placement
12/10/09 - 2nd Bone Graft Jaw Reconstruction
02/11/10 - Jaw wires removed and debridement of jaw wound (a part of the transplanted bone was infected and had to be removed)
06/10/10 - 6th Heart Cath
07/13/10 - 4th Open Heart Surgery - the Fontan
3/28/11 - Spinal Fusion Surgery in two places (and ear tube placement)
05/02/11 - Infection in incision, irrigated and debrided 4 times (done in the OR under anesthesia) with wound vac, requiring a 9-day hospitalization
03/13/12 - 5th Heart Surgery - Pacemaker generator placement
08/03/12 - Bone Anchored Hearing Aid surgery on left side.
08/24/12 - Fibula Free Flap Mandibular Reconstruction. Her fibula from her right leg was taken and placed into the right side of her jaw.
08/24/12 - Left Eye Closure Repair
02/12/13 - Bone Anchored Hearing Aid - Abutement Placement
07/03/13 - Jaw Distraction scheduled - Boston Children's Hospital
12/13/13 - 7th Heart Cath - CNMC, DC
Procedures Under Anesthesia
Bronchoscopy - 2
CT Scans - when she was younger she needed anesthesia, now she doesn't!
Ear Tube Placements - 4
Auditory Brainstem Response Tests (hearing tests) - 2
Jaw distraction - July 3, 2013
Prosthetic ear placement
More jaw surgery - despite three jaw reconstructions - her jaw will not be able to grow at normal pace. No matter what we do, the rest of her face will grow at a faster pace than her jaw. So, she will have to have future surgeries as she ages.
Oral surgery - She has the same number of teeth, with half the jaw space. Currently, her mouth is very arched. So, her back teeth touch first, not allowing her mouth to close properly. At this point, we don't know what needs to be done to fix it (other than more surgery, of course!).
And whatever else comes up!
Harlie is the busiest six year old I've ever met. For some interesting stats from her 1st year check out this post. You won't believe it. I hardly believe it myself.
Monument Avenue 10K!
2 weeks ago