Warning: This is a longer post.

This past year has been full of ups and downs to say the least.  I know I haven't been the best about posting regularly so I thought providing an overview of the last year may be better than an update.  While many of you are aware of Christian's incredible progress, I hope that by sharing publicly others may be inspired to give hope a chance. 

The Beginning:

May 24, 2020 was a terrible day for many after news spread of Christian's accident.  In the beginning, we were uncertain of the potential outcome at nearly every turn.  I recall walking in to Christian's hospital room on May 25th, after not even 12 hours in the SICU, and hearing the doctor tell my mom that we need to consider the quality of life and come to terms with the fact that "our loved one will not walk out of here in the next six months to a year" and that "we were looking at a very long recovery which could last years".  Only part of that statement ended up being true.  Christian began walking (albeit with a walker) and was home within 4 months after his accident.   His recovery will last years, which when compared to the alternative of a world without the little monk, is nothing. 

I remember being completely shocked when I heard the doctor say that.  Now some of you may not know me that well, so I'll provide some background for context.  I tend to approach things logically, which I continued to do so throughout this experience, whereas my mom reacts more on emotion.  I also tend to ask A TON of questions.  I am incredibly curious and I love learning so I strive to fully understand everything.  On one hand I understood the importance of determining next steps with the end in mind, meaning if you start moving in a certain direction you may quickly end up beyond the point of no return with an undesirable result on the horizon.  However, on the other hand, I just kept thinking he's just a kid and he's so strong, how could they possibly think this?  And, it's so early.  He hasn't even been here for 12 hours, how could they possibly know.  Now, after the doctor said all of that, she mentioned the need for neurological prognostication which had not been done yet.  Cue, Dr. Waschman, who provided us with some much needed hope.  

Shortly after hearing the laundry list of injuries Christian sustained and hearing how bleak everything looked, we heard hope from his neuro intensivist, Dr. Waschmann.  He told us that given Christian's age and injuries, he has seen remarkable recoveries and believed Christian could even make a full recovery.   Now, the question that kept lingering in my mind was what is a full recovery?  All of these doctors just met Christian for the first time now (unconscious and badly injured). I was concerned they may see his diagnosis of Down syndrome along the litany of other injuries he suffered and assume the bar wasn't that high to begin with, which couldn't be further from the truth.  I began googling traumatic brain injury, and the recoveries, interventions, and outcomes.  I found very little that seemed definitive.  There were some case studies and that seemed to be it.  No one really told their story or what it was like for loved ones of a traumatic brain injury.  I believe it was in that moment that I felt compelled to share our story once we reached the finish line.  It is only now that I fully realize that the finish line is not as clear cut as I had anticipated.  

What's Changed

Since arriving home Christian has continued to progress.  He came home and it took quite a bit of work to navigate him into the shower or in and out of the house or in/out of a car.  He was pretty much limited to his wheelchair for ambulation.  He eventually graduated to his walker, and then out of his walker.  He still has some balance issues and has trouble getting up and down stairs independently, but is okay if there are rails on both sides.  He may never be as independent as he once was as he often over-estimates his abilities and thinks he's "all better" or "totally fine".  Verbally he's a little slower than he was before, but everyone seems to understand him better - probably because he has to try a little harder than before, and laziness in enunciating his words was the issue with his communication pre-accident.  He has some issues with volume control and often speaks louder than he realizes - and he lowers his volume with just a  gentle reminder.

What Hasn't Changed

Christian remains the same loving and lovable person as before.  He has the same sense of humor and enjoys the same stuff he did before.  He loves people and enjoys being surrounded by them.  He is still incredibly affectionate and is so very thoughtful.  All of the things that make Christian who he is remain unchanged.  

When I was reading about TBIs and potential outcomes, there was a lot written about the clinical implications, but I wasn't able to find a lot about survivors and who they are with an injury, or how the injury may have impacted them.  I wanted so badly to know what the worse case scenario could be so I could plan and be ready for it.  Christian and I are incredibly close and he is very important to me - a feeling I know is shared by many (because it's just Christian and that's just how lovable he is).  I felt like I needed to know the worst possible outcome as I am the type of person who likes to at least be prepared for the worst while expecting the most likely.  I am a planner and hate to feel caught off guard (different from my mom in many ways).  Most importantly, I wanted to know if Christian would still be Christian after the accident, which is something I was unable to really find in my reading.  While I was prepared for the worst, I am grateful to say that Christian is Christian.  He is just as fun loving, kind, and thoughtful as before.  Honestly, the only change is that he's a touch more persistent than before, which was probably necessary for his recovery.  He does not give up and is perhaps also a bit more patient now.  

What We've Learned

This past year was tough and looking back now, it's hard to believe we got through it, but we did.  And, having been through what we experienced, I am overwhelmed with gratitude and an overwhelming desire to share that gratitude.  

First of all, we could not have gotten through this without all of you.  There were days when it took a great deal of energy and effort to identify the positives to write the daily post, and doing so helped me to continue to focus on it.  Plus, whatever energy it took to identify and write the post, I got back tenfold when I read the wonderful comments from everyone.  It felt like we had our own personal cheerleaders and this community really helped us to feel like we weren't alone.  I looked forward to reading the comments every day, and I read each and every single comment to Christian (which I think helped a lot).  

Thank you Aunt Terri for suggesting CaringBridge to Natalie.  Out of all the options available, daily phone calls, or zoom meetings for updates, this site is the best.  The ability to have asynchronous bi-directional communication was incredible.  We were able to update everyone and they could comment for us to read when we were ready.  To everyone reading this, if you ever see someone going through a health scare like this, I highly recommend you suggest CaringBridge as an option for updates.

Thank you to all the nurses and doctors out there who truly advocate for the patient.  Christian had the terrible misfortune of being injured during the peak of COVID, so visitation was limited to my mom and I.  And, at first they didn't want to even let us in to see him.  I firmly believe that loved ones are the single greatest advocate for a patient.  If you are in healthcare or plan to be in healthcare, please remember to advocate for your patients.  Any injury is scary and patients are aware of those around them, even if they aren't fully conscious.  I remember seeing Christian that first day and telling him "Hi little, it's medium, you're going to be okay", and feeling him squeezing my hand in response.  In that moment, I knew he was in there.  I knew he could fight his way back.  He knew my mom and I were there and he was trying with all his might to work his way back to us.  There were many times during Christian's stay that the visitation policy had a negative impact.  For example, one night he pulled his trach out because he was agitated.  Had either my mom or I been permitted to stay, I do not believe that would have happened.  I understand the need for limited visitation for patient safety and it is imperative that it be balanced with patient needs.  Conscious or not, patents can feel the love and support from those around them.  Please advocate for patient needs at every possible juncture.  Patients are the entire reason for the health care system.  They are the product and the consumer.  They are everything.  They should be at the center of every decision.  And while I understand the need for nurses and doctors to do their job with limited interruption, the handoff is so short and patient charts are so long.  A couple of times during Christian's stay I witnessed transition of care issues.  Nurses citing a chest tube that was taken out a week prior, or incorrect injuries being cited, it can be difficult to synthesize so much information on so many patients.  And, Christian was the only patient I cared about so I paid attention and recalled all of it.  That's what family members and visitors do, and they will always advocate for their loved one.

Thank you Phil Mann Jr. for saving Christian's life.  We are so blessed that you were in the right place at the right time.  It was the height of the pandemic and not many people would have given rescue breathing to a stranger due to potential exposure to COVID and/or blood borne diseases.  You saved Christian and we are so grateful to have met you and heard your story.  

Attached is a one year recovery video I made to commemorate the incredible progress Christian has made this past year.  His recovery is nothing short of miraculous (so thank you everyone for the countless prayers and positivity).  I hope to be able to share more about our journey in the future and while I wish no one else ever experiences this, there likely will be others.  If so, I hope they come across our story and it gives them hope.  The outcome of a TBI is beautiful.  My little brother is a beautiful soul and I am eternally grateful to continue to have him in my life.