Intracranial Pressure

2/9/17 6:00pm It looks like we're a go for cranial surgery first thing tomorrow morning!


2/9/17 11:00am We had a quiet night (well, as quiet as it gets in the hospital) and got moving on things early this morning. An EKG, chest X-Ray, and echocardiogram are on the docket for today  to ensure that there aren't any new or pressing cardiological concerns that could impede our ability to move forward with cranial surgery. The lumbar drain doesn't seem to be bothering Abby at all and is doing its job. We learned this week that ALL of Aberdeen's cranial sutures are fused, which was not the case when she last had a CT scan this past June. There just isn't anywhere for Aberdeen's brain to go, hence the increased intracranial pressure. The craniofacial team will open those sutures back up, relieving the pressure on her brain, and move the pieces of her skull around to allow for optimal protection for her eyes and room for her brain to continue developing. The team feels confident in their ability to do this safely and are hoping to get her into the OR tomorrow morning (this will require some adjustments to the current OR schedule, so it's not set in stone yet). Abby has been in a great mood all morning, and we are pleased how quickly everything is proceeding.


2/8/17 6:15pm Abby is out of her lumbar puncture procedure and is awake and doing well. Part of this procedure was to measure the amount of pressure in her head, which turned out to be dangerously high. Normal pressure for a small child would be under 18 (measured in mmHg) - Abby's clocked in at 49. From the sound of it, we caught this just in time, as pressures that high could easily have caused her to go blind. She just hasn't been exhibiting symptoms, and without the ability to communicate to us that she may have perceived that something was wrong, there was really no way for us to know. Very scary and incredibly frustrating. Thankfully, it was caught in the nick of time, and we are moving in the right direction now. A drain was placed to remove any cerebral spinal fluid she produces in the next few days, and her body will continue to absorb fluid as well, hopefully relieving the pressure in an efficient, safe manner. The neurosurgeon suggested that she wanted Aberdeen in the OR for her major cranial expansion by early next week, but we'll see what the schedule permits - there are a lot of people to organize to make this happen. We're very thankful for this team and the fact that Abby is still acting like herself through all of this.


2/8/17 9:00am News this morning has not been great. There is significant concern about the effects the amount of pressure in her head could have on her eyes and brain. CT revealed complications with her veins and blood vessels that render certain surgical options impossible, so right now they are trying to buy her some time while they come up with a reasonably safe surgical plan. They are going to start her on a medication that should help slow the production of cerebral spinal fluid, although this is considered a temporary solution. They will also be doing a lumbar puncture (under anesthesia) to gauge the precise amount of pressure in her brain and drain excess cerebral spinal fluid to hopefully keep any catastrophic effects at bay. We will be here until they formulate a plan and she has surgery - most likely within the next few days. Thank you for your thoughts and prayers.


2/7/17 11:00pm Things have been moving pretty quickly since we arrived at TCH. We're still in the ER, but a request has been put in for admittance to the neuro floor. Ophthalmology came by and confirmed the optic nerve swelling that was seen at yesterday appointment. They've placed an IV, run labs, and performed a CT scan with contrast to get a better look at her veins (she had a CT without contrast done about a week ago that they have as well). She's currently sleeping as we wait for admission and for all the necessary teams to confer regarding the plan.


2/7/17 4:30pm Well, we are currently en route to the TCH ER after a concerning ophthalmological exam yesterday.  Also, my Blogger app broke, so I apologize if this post looks a mess, I can't tell. Anywho, we had an eventful trip to the pediatric ophthalmologist at the military treatment facility in San Antonio yesterday morning that lasted 3+ hours and included a fire alarm/quasi evacuation. The resident and attending checking Aberdeen's eyes agreed that there appeared to be optic nerve swelling, obscured vessels, and a possible hemorrhage - all indicative of intracranial pressure and requiring immediate follow-up with her neurosurgeon to determine the necessity of cranial surgery. After talking to the craniofacial team at TCH, it was decided that they wanted their ophthalmologists to look at her first to see if they agreed with the findings. We scheduled an appointment for Thursday and carried on. Today, we get a call from the craniofacial team saying that not all of the information was relayed to the right people and now they want us to come to the ER for further evaluation. So we ran around like chickens with our heads cut off getting everything packed and hit the road. I'll update when we have more information.

In other news, Abby got her AFOs (new leg braces) today and stood on her own for a few seconds for the first time ever!