We’re not even out of the hospital yet and there’s already so much to unpack… figuratively of course.  I haven’t begun to process the trauma we experienced during our 6 hours in the ER and the overwhelming, unfamiliar scientific terms swirling around in my head.  It’s all so much.

A quick backstory – Max’s finger was red and swollen two weeks ago.  While he is what most folks would call non-verbal, he is very communicative.  However didn’t alert us to this angry digit.  Mike noticed it when he sat down with him on a Friday after school.  Alarmed, I took him right to urgent care where they drained it and sent us home with five days of antibiotics.  It seemed to be getting better, until it wasn’t.  After his pediatrician suggested x-rays that came back abnormally yesterday, we were immediately referred to the ER.  I’ll spare you all of the details, but if you didn’t know, the ER is quite possibly one of the least sensory-friendly places on the planet, even despite the efforts of caring staff in making accommodations for Max where they could.  During the six hour ordeal, four of which included restraining our sweet boy so we wouldn’t rip out his IV or aggravate the finger from which the hand surgeon removed his entire nail with just a local, the only thing that kept replaying in my head was “this is so terrible.  I’m not sure this could actually be worse for a sensory kiddo.”  It. Was. Awful.

The word amputation was used to prepare us for a worst case scenario, and another doctor cautioned us that if there was osteomyelitis (infection in the bone), he’d have to have IV antibiotics for WEEKS.  All I could think about was “right now?  You’re choosing to tell us all of this now?  Have you read the room?  Our child is beside himself.  His parents are sweating from holding him down.  Could we chat about this later perhaps?”

Mike and I kept it together for as long as we could, and then eventually took turns crying out of frustration and fear, but mostly out of feeling completely helpless that our baby was in so much pain and distress.

Fast forward a bit and after six hours we were admitted and brought to our room.  The only way to be sure Max didn’t have osteomyelitis was to do an MRI which they wouldn’t be able to do until the morning. He was already scheduled to have an MRI on his brain in a month along with an extended EEG to determine if he’s having absence seizures, so since he was going to be sedated for the MRI on his finger now, we asked if they could just do his brain at the same time.  They agreed – Hallelujah for efficiency.

MRI results came back this afternoon.  No Osteomyelitis (insert giant sigh of relief here!), but the brain photos showed a chiari I malformation at the base of his brain.  They weren’t looking for this, which is often how they’re detected.  Sometimes people go their entire lives with a similar malformation and never know it because they don’t have any symptoms, others require significant intervention to relieve the pressure this causes.  Some symptoms align with things we know Max has experienced, others it’s difficult to know for sure.

We came in for a finger and are leaving with the addition of the neurosurgery team to Max’s circle of support.  That doesn’t mean that he’ll need surgery necessarily, but it means a spinal MRI, more x-rays, appointments and consultations to determine the path forward. This could be a huge missing piece to our Max puzzle.

My parents raised their four daughters to be resilient and resourceful.  But I’ve come to learn that doesn’t mean we don’t feel afraid, even numb at times.  We just don’t stay there for very long because we’re on to creating a plan of action and putting it into place.  Sometimes I don’t think I allow myself to stay there long enough and really feel the feelings to be honest.  Working on that.

I never felt like I was good at compartmentalizing, but I think my brain has done that for me in this instance.  I can’t feel overly scared or nervous about what the future holds really, because there’s so much to navigate in the present moment.  I find I’m holding onto the optimistic things the neurosurgery PA shared rather than spending any time thinking about anything scary and intimidating that she mentioned.  I just can’t right now.

Mike went home for the night to be with Fletcher, although he has been loved and cared for by his grandparents since this whole ordeal started and has done just fine.  There’s a huge balancing act when you have another child at home, because he, too, is navigating this with us, just from afar with no real context.  I FaceTimed our very sensitive and concerned Fletcher at home tonight. After he could finally lay eyes on his brother, see his finger and look at the buttons and light on the machines he said “So how is this for you, Mom?  Where do you sleep?  Can you show me what you see out the window?”  

In addition to knowing his brother is okay, he needed to have a picture in his mind of where his Mama is.  I melted.  While we work really hard to prepare him for major life events, this isn’t one we could scaffold for him.  That, too, has been hard.  Our routine-oriented seven-year-old has had anything but routine the last two days. 

I hear the periodic ambulance or the screaming baby down the hall and I can rationalize how lucky we are and that we could be navigating situations that are far worse.  But I also know that this has been both traumatizing and terrifying and we have quite a road in front of us.

I’m staring out of our 10th floor window at cars cautiously navigating the snow covered roads, while listening to the steady breathing of our brave and tenacious baby, grateful for the warmth of our room.  I have to keep reassuring myself that we’re safe, I’m safe.  Because even though we are safe in the literal sense, I just don’t feel it.  I’m uneasy, unsure, and concerned.

I’m comforted in knowing that today was lightyears better than yesterday and tomorrow will likely be better than that.  Being the recipients of a lot of love and support has been really comforting, too.  We are lucky to have each other, but also a squad of really amazing folks who love us hard.

I’m ending a long day focusing on gratitude, I find that helps me refocus, regroup, and find my footing.  I know tomorrow will be better.

I can’t create a list of things I’m grateful for in this moment without a special nod to Peppa Pig and Blaze and the Monster Machines for being such a constant source of entertainment for Max while he’s confined to a bed.  They may single-handedly be responsible for taking his mind off of that blasted IV in his hand!  

My gratitude extends to our access to amazing medical care, all of the people caring for Max have been wonderful.  A little extra shoutout to the nurses on West 10.  They have embraced his sensory needs with grace, always making us feel like they get it – I’m not sure there’s a greater gift for us as parents.   

Most notably, I’m grateful for our families and friends who are in this right along with us… and for hope.  If Max and Fletcher have taught us anything, it’s that there is always, always hope.