Friday, July 10, 2015

Rough Day

Poor Sarah has had a really hard day. She is in a lot of pain and feeling nauseous. She has been quite sad despite her smile in this picture. We have a call into the doctor to try and get her some anti nausea medicine. Hoping tomorrow is a better day. She is feeling very sad about her hair and now wears this hat. I told her she is adorable either way.

Thursday, July 9, 2015

Going Home :)

Going Home!!!

The best kind of medicine!

Sarah and Jason couldn't be happier to be together. He was the exact dose of the right medicine for her. They are going to have a lunch date :) Until lunch arrives cartoons and coloring in bed.
After getting some more medicine for her sore noggin Sarah slept well last night. This morning her dressing came off and drain was taken out. We may go home today but it depends if she is eating and drinking better. Jason is coming up with Daddy to visit today. Sarah can't wait to see him!!!

Wednesday, July 8, 2015

CARNIVAL




Spent a little bit of time at Ryan Seacrest Studio for a Carnival Event put on by Child Life. It was a great distraction and a chance to get out of the room. We also had a great visit with Grandma and Grandpa today too. Sarah is doing well. She is quiet and tired which is par the course. The doctors say she may even be able to go home tomorrow.

Finally some food :)

On the menu for lunch is some chicken noodle soup and crackers......and maybe a chocolate chip cookie :)

First Morning

Last night was a long night of vomiting on and off but this morning seems to be better. Sarah seems more herself this morning and has finally taken her very first sip of a drink. She has found her smile again and is happily watching Cake Boss. Thank you all for your well wishes and prayers!

Tuesday, July 7, 2015

Out of Recovery

Sarah is out of recovery and in her own room. We have a window bed which is great. Sarah is in room 901B. She has been sick from the anesthesia but is alert and able to tell us what she needs. They are watching her blood count which is now low from the surgery and her head seems to be ozing a little more than they would like. Her pain is well managed at the moment and she is sleeping on and off comfortably.

Good News

We can't believe it but Dr. Meara and Dr. Proctor just came out to talk with us. They are all finished there work. They report that the surgery went well and that they filled in all of the bony gaps. These bony gaps were covered with a combination of harvested bone and titanium mesh. The doctors reports that the use of this titanium mesh will make it so Sarah will not need surgery on her skull to fill in gaps every again!!!! This is great news :) Anesthesia is still working with Sarah and will decide whether to keep her breathing tube in and keep her somewhat sedated or whether they will slowly be waking her up. We are not sure whether she will go to the ICU or not as yet.

Meet Sarah's Plastic Surgeon: Dr. John Meara


Voted as one of the 20 most innovative pediatric surgeons alive today!!


Dr. John Meara is the associate professor of surgery and the associate professor of global health and social medicine at the Harvard Medical School. He is also the plastic surgeon-in-chief at Children’s Hospital Boston. He is the director of the Paul Farmer Global Surgery Fellowship program in order to train doctors and community leaders and make surgical care, education and research on craniofacial anomalies accessible around the globe. He performs craniofacial surgeries at the Advanced Fetal Care Center of Children’s Hospital Boston in order to treat cleft lip and palate as early as possible, increasing the likelihood of positive outcomes and reducing the risk of feeding and speech complications. He pioneered research in the economic impact of surgical interventions in third world and low-income countries. He also developed programs to research the quality, safety and effectiveness of cleft lip and palate surgery in low-income nations. His primary practice goal is to reduce the burden of significant surgical diseases around the world so that appropriate care is affordable and accessible to children in any country.

Meet Sarah's Nuerosurgen: Dr. Mark Proctor

Mark  R.  Proctor, MD, FAANS



Mark Robert Proctor was born on October 22, 1964 in New York City and raised on Long Island as the youngest of three children. His parents, Roslyn and Seymour, ran a small printing shop, and he comes from a long lineage of printers. He entered Dartmouth College in 1982, was a varsity heavyweight oarsman, rowing all four years, and graduated with a major in French. In 1986 he entered Columbia University College of Physicians and Surgeons, obtaining his MD degree in 1990. He was an active rugby player and team captain at Columbia.


Mark did his general surgery internship at Columbia Presbyterian Hospital followed by neurosurgery residency at Georgetown University. In 1997, he went to Children's Hospital Boston for his Pediatric Fellowship. He joined the faculty at Children's Hospital and Brigham and Women's Hospital in 1998 as an instructor of surgery at Harvard Medical School. He became Assistant Professor in 2003 and Associate Professor in 2010.


Mark has served as the Associate Director of the Brigham and Children's Residency Training Program since 2000, directing the residency training at Children's Hospital. He served on the Admissions Committee at Harvard Medical School from 2001 to 2004 and was appointed Vice -Chairman of Neurosurgery at Children's Hospital in 2012. His clinical interests include craniofacial disorders, complex pediatric spinal disorders, and neurotrauma.


Nationally, Mark has been very involved in advocacy and injury prevention. He has been on the board of the Thinkfirst National Injury Prevention Foundation since 2002 and served as Chairman of the Board from 2009 - 2011. He is on the Executive Committee of the Pediatric Section of the AANS/CNS, served as the Membership Chair from 2007-2010, and currently is the Treasurer. He is a Member at Large of the New England Neurosurgical Society and also Vice President of the Massachusetts Neurosurgical Society.


Mark married Dr. Charlotte McKee, a medical school classmate, in 1991. She is a pulmonologist and works in the field of lung transplantation and with the biotech industry. They live in Newton, Massachusetts with their two children, Maxwell and Kenny. They enjoy bicycle riding and boating at their lake house in NH, and Mark is also an avid squash player.

First Check-In Report

We were just updated that Sarah is doing well. Once anesthesia was set and she was positioned correctly the surgery (first cut as they say) began at 8:30pm. Dr. Mark Proctor who is Sarah's Neurosurgeon began the surgery. He will open up the area which requires a lot of attention to detail. He is preparing the area for Dr. Meara who is Sarah's Plastic Surgeon to harvest bone and try to fill in the bony gaps.

"The Thundermans"

Pre-Op waiting includes watching "The Thundermans"

We are here!

We are here and ready as we can be. Our scheduled arrival time was 6am for 7:30am surgery start time. Sarah although nervous and a little sad is being a real trooper. Here she is in the waiting room. Bill and I keep making corny jokes to keep the mood light.

Sunday, July 5, 2015

What the Surgery Involves

Cranioplasty is as a surgery done to improve the symmetry and shape the head. It involves the neurosurgery repair of irregularity or imperfection in the skull. The major purpose of cranioplastic surgery is to provide protection for the brain. Since cranioplasty is a surgery of the brain which is the most sensitive part of human organs, it is a complicated procedure. It requires a surgeon who is highly  professional, skilled and experienced. The surgery involves the use of a bone graft to repair a gap or defect in the vault of the skull. The graft is done using bone from the pelvis, ribs, or part of an adjacent skull, even suitable synthetic materials such as silastic or tantalum can be used.

What are the causes of abnormalities of the skull?

There are several conditions which can lead to abnormalities in skull structure, such as
  •  premature close of the cranial sutures
  •  Incapability of the skull to expand as the brain grows.
  •  Some hereditary conditions that can cause children to be born with skull irregularities.
  •  Persistent damage to the skull as a result of trauma.
  •  A hole in the head.
  •  The defect in some places that leaves the brain exposed that could cause severe damage


  • How is Cranioplasty performed?

     Cranioplasty is a procedure that takes approximately to replace a portion of the skull with either original bone tissue or plastic implants.
  •  The patient is given general anesthetic and is positioned with the bone defect uppermost.
  •  The area of incision is shaved and prepared with antiseptic.
  •  The patient is covered in drape in such a way only the incision can be viewed.
  •  Local anesthetic is injected and then the area is cut.
  •  The scalp is cut apart from the ‘dura’, the underlying covering of the brain, and the edges of the surrounding bone are cleaned to let the graft to stick.
  •  The surgeon will decide on the source of the graft. The iliac bone bounding the pelvis, ribs and even a part of adjacent skull bone can be used.
  •  It is also possible to fix a gap in the skull by using synthetic material. Materials such as tantalum, silastic, titanium plate, rib graft, prefabricated acrylic, synthetic bone substitute, and other similar material manufactured for the fast use of implantation into the body can also be used.
  •  The original bone or a replacement that is kept ready is placed in the defect area and secured with screws, plates or with special discs.
  •  If the graft is not available, the patient is treated from the chosen material.
  •  This is shaped to fit.
  •  This is also fixed to the surrounding area.
  •  Once plated everything is repositioned.
  •  The skin is then closed either with nylon suture or with special staples.


What is the recovery time?

  •  It is essential for the patient to be in hospital.
  •  The ease of the operation relies on the cause of the bone defect.
  •  If the underlying covering of the brain, the dura mater, is unbroken and healthy, the operation is straightforward and uncomplicated.
  •  The patient is discharged about 5-7 days.
  •  The sutures are removed 5-10 days after.

Vacation at Old Orchard Beach


We spent last week at Old Orchard Beach, Maine. This is one of Sarah's favorite places and what she describes as her happy place. We spent some nice family time together which was a happy distraction from her surgery. Sarah enjoyed riding the waves on her boogie board, making castles in the sand, and riding the amusement rides downtown. She had the chance to just be a kid with no restrictions cartwheeling in the sand. Bill and I enjoyed watching her! She and Jason had loads of laughs throughout the week including burying each other in the sand.