I’m in a full blown special needs parenting panic mode

This has been a really long week, full of health related Gavin issues.  The week began with the news that he was having worsening Autonomic related symptoms at school. 

As the week progressed and we reached Thursday, I entered into can only be called a special needs parenting panic. 

Here’s what happened…


As you all know, Gavin now receives his IVIG infusion at home each Friday morning.  We get 4 weeks of Gammagard and infusion supplies at a time and they are hand delivered every 5th Thursday. 

What’s got me in a state of panic is one simple fact. Gavin’s medications and supplies never showed today. 

Gavin’s infusion is supposed happen around 8am this morning but we have no medications and no supplies.  WTF is happening.  This is only our 2nd shipment and it’s never showed up. 

Lizze called Akron Children’s Hospital and inquired as to what happened.

Turns out that there was an issue with the deliveries and it’s delayed by a day.  Apparently, the supplies will arrive sometime Friday. 

Here’s my question.  WHAT THE FUCK??? If you know how important these deliveries are to the families that are supposed to be receiving them, why would you not call them to let them know their delivery isn’t showing up?

Now Gavin’s IVIG Infusion is delayed until they arrive at some point tomorrow. 

While it may not seem like a huge deal to most people, when your child has a severely compromised immune system, you live from infusion to infusion.  When something doesn’t go right or doesn’t happen on time, panic sets in.

That’s where I’m at right now.  Freaked out. 

Honestly, I’m nervous every single time we have to do these infusions because with Gavin, absolutely anything can happen.  Things can go really well or very, very badly.  We never know…..

So oooooooohhhhh….. I was already stressed out to start with and now his meds and supplies aren’t here. 

It’s probably a safe bet that I’m not going to get much sleep tonight.  I’m feeling really, really panicked and all I want is to get these meds and get them into Gavin’s body so he can be safe for another week. 

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉

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Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Carin L. Roylance

Me too. )-: #emailfromtheteacher

Avia Batya