Tuesday, February 21, 2017

Adjusting to Home

Some things about being home are beautiful.  It's wonderful not to have people coming to bother your child at all hours of the day and night. It's great to be able to go on a walk outside when the fancy strikes.  It's nice to think that you might be able to actually get some sleep here and there.  Other things about being home are incredibly challenging: mainly, you don't have medical professionals at your beck and call whenever you think something might be wrong.

Things have admittedly been a little rocky since Aberdeen was discharged on Saturday morning.  She has started throwing some pretty epic tantrums again.  They don't necessarily last very long, but she can go from 0 to 100 at the drop of a hat.  With the tantrums come difficulties post-op that we haven't had to previously deal with.  Every time she starts screaming, her incision starts to bleed again.  I'm genuinely worried that she is going to seriously hurt herself during these episodes and I don't know what to do. Her incision runs from ear to ear over the top of her head like a wavy headband (plus the additional incision she has on the back of her head from her shunt placement).  Because they expanded her skull so much to give her brain room, they had to stretch the skin considerably to get it to fit back over her new skull shape.  The skin at the incision isn't healing as quickly as we'd like because of how thin it is stretched in certain areas, causing it to drain blood and fluid more easily than it might in other craniosynostosis cases. We've consulted with the craniofacial team over the phone and have sent them lots of pictures. They've assured us that the drainage we are seeing is still within the realm of normal, but it wasn't happening while we were in the hospital, and it really isn't fun to have new things pop up once you are three hours away from the people who can best help her.  Not to mention the fact that her skull is visibly shifting around. At certain points during the day, you can see the anterior portion of her skull moving independently of the posterior half.  Also expected, apparently, but pretty disconcerting to watch happening.  I feel like we're a little out of our depth right now. Everything happened so fast, and I'm worried that we aren't as equipped to deal with some of these bumps in the road as we have been in the past.

We're trying to stay optimistic and establish a sense of normalcy again, but it has not been easy with seemingly so much changing from day to day.  We're doing our best to keep Aberdeen calm and happy, but she's two and a half, and there's only so much that is in our control.  Thankfully, she is at least acting like herself the majority of the time (yes, even the tantrums), but we can't allow her to just do her own thing right now, she has to be closely monitored 100% of the time. I can't speak for Jameson, but I know that I am feeling pretty well maxed out.  My parents have been here and able to help, but the majority of the issue is just the accumulated stress from two jam-packed weeks of medical mayhem and the feeling that we're going to have to drop everything any second and race back to TCH.  I feel like we've experienced a year's worth of anxiety in just two short weeks.  I'm praying that some of her symptoms start to settle, so that our stress can abate and we can breathe a little.

We will be heading back to Houston in about a week for post-op follow ups and a cardiology visit as well.

1 comment:

  1. Hang in there. We will keep praying for you all.