This coming Thursday, 10/9, marks 12 weeks since Christopher has been hospitalized but who’s counting 🥺.  

Everybody asks out of concern how he’s doing and that question has gotten progressively harder for me to answer. The deficits he faces because of ADEM have reared its ugly head AND entire body, which has forced us all to accept a “new normal”.  We had a care conference Friday and for the foreseeable future he will be dependent on others for care and is essentially wheelchair bound. The permanency of his physical abilities and mobility assistance is a new normal for him and it will be an adjustment for everyone. 

This is not to say that his time at TIRR has been for nothing. He has made positive gains within each discipline despite the continued “neurostorming”. He has improved on establishing a non-verbal communication system, weaning off his trach, and continuing to receive stimuli that hopefully will lead to new motor nerves/pathways. Best we can all do is just meet and plan for where he is today and continue to remain hopeful that the multidisciplinary therapies he receives will bear some nice juicy fruits. 

I returned to work two weeks ago, and my coworkers have been wonderful because I’m almost completely useless. A lot of my brain power has been trying to coordinate medical care for Christopher when he returns: home therapies (speech, physical, and occupational therapies), neurology follow-up, and a doctor to manage a baclofen pump he is getting placed next week. Also trying to figure out how remodeling our house will work so that it can accommodate his wheelchair, hospital bed, mechanical lift to help transfer him from bed to chair. Wheelchair ramp into the home, bathroom/shower access. Researching wheelchair accessible vans/transportation, purchasing vs renting vs relying on community resources. So, any coworkers out there reading this, thank you for your patience and kindness. 

I’ve been trying to reach out to charities and companies to help cover his transportation back home since insurance doesn’t cover it and he can’t fly commercial (can’t hold himself up/poor motor planning and coordination) but have gotten no bites. A 34–36-hour car ride is $17-$20k and a medical flight is $30-$50k. I was also thinking we could probably pull 3-4 people to help drive him but I just don’t know what that looks like from a medical standpoint (toileting, eating, rest stops, etc.). Unfortunately, the charities I've reached out to are mostly geared toward children 🫤.

 

My hope is to raise money for the larger ticket items that insurance doesn’t cover: 1. Transportation back to Seattle from Houston and 2. Searching for and purchasing a wheelchair accessible vehicle on this SupportNow page. I’m also open to any suggestions or recommendations related to resources or avenues to explore/apply for on his behalf. I know with this ask comes the responsibility of sharing photos of Christopher but honestly, I’m still struggling with the idea of sharing photos of him hospitalized, while also trying to hold onto what Christopher would want. 

 

In other aspects of our lives, I’ve been trying to help the boys (and myself) set realistic expectations as far as this new normal thing goes, and I’ve also been struggling with accepting or declining my spot in a nurse anesthesia program I got into with the Army. A lot of family and friend support will be anticipated if this occurs and once we find committed parties we can hopefully build a more solid plan surrounding care for both Christopher and the boys. Honestly, I don’t know. It’s a lot and so dynamic. I wish I had more definitive answers, but this is our reality for now.