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…
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Thanks to all who have responded that they will be praying.
Thank you all for your continued prayers. As best as we can understand a complicated, almost unheard of, medical procedure, miracles abounded. More was accomplished than expected. The support and response of people has been phenomenal and Alexxa made it through with minimal lose of blood and without apparent lateral damage. The short term concerning is that swelling be reduced. She has a pulling device attached to her skull that for the next couple of months they will be extending the bone plate. You can imagine how this will complicate her life and care.
Please keep praying and speaking Jesus’ mighty name over her and her family.
Naomi and Jim
A more complete report this afternoon:
Lexxi lu lu….well she had a restful night. Mum was with her holding her hand and praying and singing over her. She was on a light sedation and is still intubated. The Dr. said the procedure went better then he expected. There was minimal blood loss (50ml estimated) and the incision path was achieved !!! Step 2 has a whole new set of challenges. The halo (hardware) that has been placed has been secured with 4 screws and 1 pin on either side of her head. The screws are only “resting” on the bone as her bone that they are resting on is so thin that they were unable to attach them firmly. In addition the positioning of the screws on either side of the head are not symmetrical due to the veins and shunt being in the way. So there is uncertainty about its stability. Currently they just turned off her sedation and are allowing her to wake up. We are waiting…as she wakes there are tears flowing down her cheeks so they are transitioning her over to heavy pain drugs instead of sedation. our goal is to get her extubated. The challenge is we have to keep her still so the halo doesn’t tilt or tip. The halo has to stay in place for 3 months currently (or until bone grows and fixes through the distraction period). They will not begin to distract forward against the halo until her swelling is controlled. Her eyes are currently swollen closed and her whole body is pretty puffy (but not as bad as it could be…her surgery in March 2012 was much worse) It may be a blessing that her eyes are closed so that she cannot see her halo…she can adjust to how it feels first. She currently has what they call “no nos” on her arms-they are soft bands that go around her arms so that she can move only her hands but not bend at the elbow to reach for the halo, harware or iv lines…she is just beginning to wake up currently and is moving her legs. She so wants to roll on her side but will have to remain on her back for the recovery. God bless my little princess.
Please pray for the following:
-wisdom for the drs to know how to adjust the halo/screws and hardware to ensure it stays secure
-knowing how to adjust the screws as the swelling goes up and down so that they stay secure but do not puncture the skull bone causing brain damage NOTE: if the halo tilts its back to the Operating room we go…this could undo the whole procedure.
-the brain “took a breath” when they took the bone flap off which indicates that there was pressure…brain to relax and not be inflammed and continue to “breath”
-nursing team to keep her comfortable as she comes off sedation is extubated and managed with pain meds instead of sedation
-Red blood cells to continue regeneration (Hemoglobin is still a little low but is on the upward climb-supportive of regeneration) so a transfusion is not required
-Peace for Lexxi that God will continue to keep her protected and in a bubble
-Peace for Livia as she was struggling this morning- she wants to come and see her sister but its not appropriate till the swelling goes down
-wisdom to know when to let Livia come to the hosptial and how much to expose her to
-wisdom to provide happy distraction for Livia when she is home Tues/Thursdays/weekends/afterschool M/W/F
-the swelling to go down quickly hands, feet, limbs, face and eyes
-her ability to thrive and breathe as she comes off sedation and the respirator
-wisdom to know when to start the distraction process (before the bone begins to fix and heal)
-for bone production to thicken and heal (the dura protective layer of the brain is responsible for making the new bone)
-figuring out away to nurse her with the huge device on her head (currently I am pumping and storing for when she gets a nasal gastro tube)
Thats all I can think of right now and I must get back to my girl. Love to all, thanks for your continued support, love, strength and prayers.
Blessings and LOVE,