Has Anyone Seen the Other Shoe? Oh Wait…

Alright well my title is funny to me but likely needs explaining like many things in my life.  The saying “waiting for the other shoe to drop” feels like its been our life for the last two years with Will.  Going through this infinitely scary situation with him as a parent feels helpless a lot of times but the logical part of our brains understands that there is a path to recovery and he will be okay even if it doesn’t go how we envision it.  However because of our PTSD with Alex, we are always waiting on pins and needles for the next visit where things suddenly take a turn for the worse. 

This situation is hard enough on Will, Zach, Kim and I as patients/caregivers but the outlook all along has been that he will get through this and be healthy and relatively “normal”.  We are lucky that is the outlook.  We’ve seen many that aren’t so fortunate.

The problem is we make it worse because we are expecting that other shoe to drop like it did for Alex.  It’s not healthy for us and its something we are constantly trying to work through but its there nevertheless and probably always will be to a degree.  I’ll put it like this, once as a child I stuck a pair of needle nose pliers into an outlet and knocked the power out to the house.  Lets just say that learned experience prevented me from ever doing it again.  Same concept here but not as beneficial of a life lesson. 

Well this week another shoe certainly dropped but it wasn’t the one we were waiting for. 

In regards to Will, I’ve said it before but its always one step forward, two steps back.  The last month has had a lot of ups and downs.  There has been unexpected trips to the hospital and additional appointments on top of our twice a week trips for new and repeat testing to try to get to the bottom of the various challenges he has encountered.  We continue to try to wean him off of some medications, while increasing others, adding some back in he was previously off and talking about new ones that he will need as things are changing and progressing.  Yes progressing, some days its hard to remember that part.

Back to the medications, it’s the challenge we all face with medications, every single one of us is different, especially when it comes to our bodies and our medical needs.  I’ve come to have a healthy respect for the idea that a lot of this is all trial and error because they never exactly know how an individual will respond to treatment.  That said, I have and continue to feel that we have the best, most educated, knowledgeable and experienced team of doctors/nurses/medical professionals we could have and are insanely blessed that we just happen to live in Phoenix when Will is going through this challenge. 

I often feel like a broken record these days but here is the update with Will, everything with the transplant is proceeding fairly well.  Everything with the side effects and complications is less so.  It all came to a head last week when Will’s trouble breathing, movement because of pain in his ankles, high blood pressure, new rashes that we thought could be tied to GVHD and an increase in his output raised concerns to an unhealthy level for Kim and I.  It really felt like that other shoe was about to drop again. 

But it didn’t.  All the ups and downs of the last couple of weeks coupled with an unhealthy amount of time spent driving back and forth to Phoenix Children’s and the result is things kind of just are.  I know Will is still on the road to recovery but that road is long, has a low speed limit, is frequently undergoing construction, has cops monitoring the speed limit at every intersection, filled with potholes and is more windy than Lombard street in San Francisco! 

So if that wasn’t the shoe that dropped what was?  I’ve shared before that my parents have lived with us for the last three years and they have been an invaluable part of the process in supporting Will and us in getting through each day.  We rely on them a ton and despite the fact that they commonly say they don’t do enough, I honestly am scared to think where we would be without them.  That theory was put to the test this last week when my Dad ended up on a stretcher, being rushed by ambulance to the nearest hospital with signs of stroke and a fever of 104 degrees last Saturday.   

After a several scary hours the doctors thankfully ruled out stroke, but initial test results were that he had an infection and Sepsis.  Several days at the hospital later, they eventually removed his Gall Bladder as the likely culprit of the infections.  The surgeon said it was one of the worst ones he had ever seen although I think maybe they always say that so you feel better about having the surgery!

As we sit here at the hospital with Will on Friday morning we are awaiting his infusion treatment and just learned that he needs some blood products as his body has shifted back to gradually chewing through them.  My dad is still at the hospital, hoping to be discharged today, my Mom and my sweet sister, who rushed down without hesitation to help us out, by his side.  As a family unit we are juggling it all and look forward to hopefully being all back under the same roof tonight.   

It’s real easy through all of this to sit there and complain why all of this is happening to me.  That’s when I kindly remind myself that its not happening to me, its happening to others around me and I am in the fortunate position to be able to help them out.  While at times I do think that I’m everybody the reality is I’m not.  It’s a shocker to me at times I know. 

While I love to feel sorry for myself, that misery does little to help Will and Dad get through their challenges.  What does help, is my love and support for those who need it. 

So yes the other shoe dropped but thankfully it looks like it will be more of a slipper and less of a combat boot.  Unfortunately this shoe isn’t a match for the other shoe we are holding with Will, the one we have been waiting for its match to join us and praying it won’t.  As much as we don’t want to, and we logically know that shoe will likely never hit, we go back to waiting for it again while just trying to make it through each day, count the small victories and try to get through it all. 

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