From Naomi’s niece and family:
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We finally have “the date”! The date we’ve been waiting for, for well over a year. On Wednesday of this past week we found out that Alexxa is going to have her next skull surgery on Monday September 30th. This will be the largest and highest risk procedure to date.
Paul and I have had an abundance of mixed emotions. She needs this life threatening procedure and we are so thankful for the doctors and healthcare that is provided but at the same time we feel sadness and relief for all our little princess is going to face. Her surgical time will be 6-8 hours and Lexxi will be in the Operating room up to 12 hours.
A little about the Surgical procedure:
The first thing they will do is a veno-graphic study of the skull to determine an incision path that is going to minimize the amount of bleeding and not compromise any large vessels that in her unique case are draining her brain. We are hoping to achieve an incision path at the anterior part of her skull a couple inches into her hairline. The plan is to then take down a flap of skin as wide as possible and then cut a large piece of her skull bone away to remove it.
They will remodel it and re-attach it using hardware (called bone distractors) to allow for a slow distraction over her hospital stay. The hardware will be small wires that come out of the skull just behind her ears. The plan is to use these wires to push the bone forward (they will be distracted every other day in hospital if all goes well). This will help achieve more space inside her skull for her brain to grow into as well as help achieve more positive esthetics by making her forehead more rounded and giving her brow bone shape (right now she is very flat and tall as they call it). The neurosurgeon will decide the day of surgery whether her VP Brain Shunt will be brought externally on recovery or kept inside like it is now.
Normally they are able to shape and replace the new bone in the position desired without having to use the bone distraction method. However in Lexxi’s unique case she has much external bloodflow and therefore when the skin is reclosed after the bone is replaced, it cannot be stretched over the large vessels on her skull as this could cause them to constrict and prevent them from draining her brain (leading to a stroke). …
Thanks so much for your prayers
Nicole, Paul, Livia & Lexxi-lu-lu (Alexxa)
PS from Jim: I will post updates here…