Reflections and Wildflowers

I can’t say that I always love the drive out to Houston. It’s a long, monochromatic trip, with very little redeeming scenery, which usually ends in bumper-to-bumper traffic. Whatever feelings of anxiety or frustration I was experiencing beforehand are typically magnified as we zero in on the medical center. However, during the early Spring, the drive to Houston takes on a different hue.  There are a number of things I’ve grown to really love about Texas. The food is fantastic. I could eat breakfast tacos every single solitary day and never achieve boredom. There are plenty of interesting cultural landmarks and traditions, and we have met some truly lovely people. Above all of these things, what I will forever cherish most about Texas are the wildflowers. With the exception of bluebonnets, I’m not confident that I could even tell you what any of them are, but the splashes of purples, oranges, pinks, and yellows along the highway at this time of year have an ability to undo the dread that I generally feel building as we make our way along I-10.  For whatever reason, the color helps me breathe. The variegated backdrop helps remind me that it might be ok – because if this kind of wild beauty can pop up along the unsightly roadway, then maybe, just maybe, Aberdeen can make it through whatever she’s about to endure with the same sort of grace.  I don’t know that it’s particularly logical, to attribute such symbolic weight to a collection of weeds that are destined to spring forth whether or not we’re there to appreciate them, but I am nevertheless thankful for their ability to draw me out of the darker recesses of my mind and bring me a sense of peace these past two Springs.

(not my picture, but an accurate representation of what we see on our trips)

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I wanted to take a (rather lengthy) minute to reflect upon the last month.  There are lots of details that I haven’t put to paper yet because of the difficulties associated with writing on my phone, and I don’t want to forget these tidbits in the months to come. 

It has been a while since Jameson and I have truly felt out of our element with this whole medical parenting thing, but the events of the last few weeks have certainly put us to the test.  We spent more time in operating waiting rooms than we have since Aberdeen was about three months old, were introduced to equipment we’ve never seen before, much less had to contend with, and we weren’t able to draw upon any of the cardiac-related knowledge we have been accruing over the past two years.  While the necessity for an additional skull surgery has always been on the radar, Aberdeen’s heart and its function has been the primary concern for so long now, that we just weren’t devoting as much attention to the issue of her head.  In addition, because she wasn’t exhibiting ANY troubling symptoms, we didn’t have a reason for immediate concern. We never imagined that everything would have to move so quickly once her intracranial pressure rose to problematic levels.  So much changed regarding our perception of Aberdeen’s cranial status over the last month, that it has felt like we were playing catch-up. We knew going in that Aberdeen’s skull would need to be expanded due to multi-suture craniosynostosis, but knew nothing about the venous anomalies that would affect how that surgery was performed, or that they would ultimately require that Abby have a shunt placed. We were only moderately prepared for what February would put us up against – which just isn’t how we like to do things.

We now know that Aberdeen’s intracranial pressure rose to be as high as it was because of the dual issues of her skull restricting her brain growth as well as the fact that her veins and blood vessels weren’t moving cerebral spinal fluid out of her brain at the rate they should be. When the team opened her skull for the cranial vault expansion, they were encouraged by the appearance of her brain tissue and the lack of markers that would suggest that she’d been dealing with such high pressures for an extended period of time. Most likely, her pressures had been rising for a number of months, but slowly enough to not cause obvious damage, and hadn’t been at their peak for long before they were able to intervene. Though expanding her skull relieved a good bit of the pressure in her head, it just wasn’t enough in the long run because of the residual pressure left by her veins not operating effectively. There isn’t a thorough understanding of just how mildly-increased pressure affects the brain over time, but the consensus is that it isn’t good.  The only option to remedy this in Aberdeen’s case was to place a VP shunt. The shunt involves a valve and tubing that originate in Aberdeen’s brain ventricle and ultimately empty down into her peritoneal cavity (the space around the organs in your abdomen). The valve helps control the amount of CSF leaving the brain and allows for pressures to remain at the optimal level. The shunt will be a life-long device for Abby that may have to revised after a period of time if she starts to exhibit symptoms of increased ICP (although she didn’t exhibit symptoms this time around, so I don’t know how we’ll really know if there’s an issue other than catching it at a routine ophthalmology exam like we did this time).

The device that they were using to monitor her intracranial pressure prior to shunt placement was called an EVD or extra-ventricular drain.  It was a thin tube (think IV-sized) that was placed in the brain ventricle, but exited her scalp just behind the main incision (the entirety of the shunt is subcutaneous, though you can certainly see the outline of it - I'm lovingly referring to it as a dorsal fin at the moment). It was attached to a contraption set at a certain pressure level, so that any fluid in her brain that was produced above that level could drain out and be measured.  They initially had it set at 15, which would be considered fairly normal ICP, but she continued to produce too much CSF at that setting, and then at 20, and then at 25, which is when the decision was made to place the shunt.  The timing of the shunt placement got pushed up a bit when the EVD, which was sutured in, rather suddenly became dislodged.  This is not supposed to happen.  Our nurses kept telling us it COULDN’T happen.  Now looking back, this event could be considered a harbinger of things to come, as the reason it became dislodged was due to the considerable tension that had to be applied when suturing Abby’s scalp back together after her cranial expansion. The skin was stretched thinly enough that the EVD sutures tore right through her skin without any additional force.  When she came out of the OR with the EVD there was a complicated knot at the base of the tubing, touching her scalp, which a few days later I noticed had moved up the line at least an inch. Our nurse again assured us that it was probably fine, since those things can’t come out. But I was extremely concerned that something was amiss in its placement and proceeded to have a bit of a hospital room meltdown – not my first, possibly not my last. Thankfully, Abby’s neurosurgeon just happened to stop by in that moment, identified the problem (which was that the EVD had, in fact, been pulled out about an inch) and got to work removing the EVD the rest of the way and suturing up the open site. The tension of her incision suturing continued to plague us though, for almost as soon as Aberdeen was discharged from the hospital, we started to have issues with skin tearing around the sutures.

The complications with Aberdeen’s incision site were an experience altogether new to us as well.  She has had a fair few incisions in her 2.5 years, but we have never had any real issues with any of them, and as long as we followed the basic wound care instructions, everything healed up the way it was supposed to in a fairly short amount of time.  It was clear that this one was not going to proceed quite so smoothly.  There unfortunately wasn’t a way to avoid the amount of stretching and tension that had to be applied to the scalp in her case.  Because of those venous anomalies, they couldn’t do an additional surgery later on to expand her skull backwards, nor was she a good candidate for distractor surgery (an implanted device that slowly expands the skull and is later removed).  They had limited options to give her brain room to grow, and so it was a risk they had to take, and weren’t particularly surprised by when the skin started to tear. Unfortunate, surely, but not unexpected. Thankfully, when we returned to Houston this week, some of the incision had already healed and provided a little more slack with which to close the rest of the problematic areas. Hopefully, for good. It was explained to us this week that Abby’s venous abnormalities may have also contributed to the delayed healing we have witnessed with her main incision.  The craniofacial team was not able to utilize the incision from Aberdeen’s cranial surgery when she was five weeks old for this most recent operation.  It was placed too far back to address the bones around her eyes that they needed access to, so they had to make their new incision further forward. With the way that her veins developed around that previous incision, it’s possible that the scar tissue was interrupting some of the blood flow to the scalp at the new incision.  It isn’t clear that this is the case, and is still most likely simply due to tension issues, but I thought that it was an interesting piece of information. 

Thankfully, Aberdeen’s neurosurgeon seems optimistic that this is the last cranial expansion Abby will have to go through.  She explained that by this age, the brain is about 85% of its ultimate size.  She feels confident that they made Aberdeen’s skull large enough, that even if her cranial sutures fuse again (as it appears they are want to do), that there will still be enough room for her brain to finish growing without issue.  They didn’t experience the obstacles that her previous team did with excessive bleeding or the dura being fused to the skull, so we will hopefully see fewer post-op complications (the issues last time were the cause of her seizure activity), and her team also anticipates that she will eventually grow into her impressive new forehead, while her eyes will continue to enjoy a level of protection they haven’t previously had.  ;)

During all of this madness, I also celebrated my 31^st birthday. My year as a 30-year-old was quite the rollercoaster. It began with Abby being admitted to the hospital here in San Antonio with a gastrointestinal virus we could no longer manage at home. I watched as my baby underwent another open heart surgery, and then skull surgery, and then brain surgery. I got a tattoo that I love and is meaningful to me. I finally found myself back at my pre-pregnancy size. Jameson and I celebrated our 9^th anniversary, I saw my baby bird turn 2, and I watched our family strengthen and rely on each other and thrive. While 30 rivaled 28 for the title of Most Difficult Year, it was also a year of immense growth. I am grateful that I now have 31 to look forward to, and that I have the most magnificent people to share it with.

We’re praying that we are finally nearing the end of this difficult process and that the next few weeks will begin to bring healing, peace, and a sense of normalcy for our family (our own, totally abnormal normal, of course). We are incredibly thankful for all of the love and support we have received from far and wide over the past month.  This experience would have been even more difficult without the prayers, dog/house watching, notes, gifts, cross-country travels, dinners, and encouragement from all of you. Each of you have been a precious and beautiful wildflower on this journey, and we offer you a heartfelt: thank you, thank you, thank you!

And if you got through all of that, here’s your reward: