BAD NEWS – Missing supplies may throw a wrench into this morning’s IVIG Infusion

There’s been a shitload of things happen today that I should probably to talk about.  Two of these things are probably the most relavent and the rest, not so much. 

All of these things are Gavin related. 

Earlier this afternoon, I received a call from Gavin’s medical case manager with his insurance company.  She was checking in to make sure everything was going okay and that we didn’t need anything. 

She also wanted to let me know that Gavin’s salt tablets he has to take for his autonomic dysfunction, should be covered now and while they weren’t super expensive, this will save us at least $50/month.  $50 is a lot of money for us right now and this will really help.

I answered some questions and did a brief depression screener.  They are trying to make sure that Gavin’s not depressed or suicidal. 

He’s not.  So that a positive. 

The other thing that happened, occurred as I was going through his supplies and mentally preparing for his IVIG infusion in morning.  We were shorted the needle needed to draw the medication up and prepare it for the pump. 

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It’s too late to call the doctors office about this tonight. 

I’m going to first reach out to the Walgreens down the street and see if they can get me (1) 18g needle. I’m not sure if they can do that or not.  My other thought was reaching out to the fire department because that’s something they stock on the ambulance.  I’m not sure they are allowed to do that either……

What might have to happen is that I will have to make the 35 minute drive to Akron Children’s Hospital to pick one up or we may just have to put the infusion off until next week when the new shipment arrives.  Although truthfully, that’s probably a really bad idea. 

Making that drive for something as simple as this just seems like too much right now.

That said, I’ll have to do what I have to do.

Before I forget……

I also left a message for the nurse at Dr.  Reynolds office (Gavin’s psychiatrist). We need a new standing order for Gavin’s blood work. 

Gavin used to get his monthly blood work done at the time of his IVIG infusions.  The lab would then fax the results of his CBC to the pharmacy.  The pharmacy forwarded the results to the drug manufacturer and they would release his refill of Clozapine. 

Now that his infusions are being done at home, we have to make other arrangements for his blood work.

Apparently the new standing order will be ready by 1pm on Monday.  That’s 3 days from now and it will be cutting it awfully close but it should work. 

In the morning, I will have to make the arrangements necessary to make this happen.  I can’t explain just how much of a pain in the ass this medication has been.  Having said that, it’s been a godsend for Gavin and so it’s totally worth the enormous headache required for each refill. 

Hopefully everything will come together and I can pull all of this off without losing my mind. 

I’m lot gonna lie, this is really stressful because there are so many pieces and parts that have to fit together just right or everything will fall apart.  Anytime we have to make a change, there’s always the fear that these pieces will no longer fit back together. 

That’s a freakishly scary thoughts. 

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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Lost and Tired

misti0313  your two cents are well received.  The reality is that they can’t do the blood work this way because it’s a STAT order. 
This is actually a chance for me to sorta spend some one on one time with Gavin and I enjoy that.  🙂

misti0313

Just a thought you might want to consider.  I am a control freak by nature and want to do everything myself.  I really think you should take any help you can get.  You are doing so much for him, and if having someone else come and draw the blood and do the IVIG treatments gives you just 15 more minutes in the day it is worth considering.  You being in the best state of mind possible and taking help when it is available helps him and the other boys more than anything.  Just my two cents.  Carry on.

Lost and Tired

misti0313  haha…  Yeah we could have someone come out to do this. I prefer to do it myself because it helps me feel like I’m finally able to help him in some small way.
AAs for the depression screening, it was for him not me.  I’m already dealing with depression on my own….  Thanks for your kind words.  I really appreciate it.

misti0313

Please excuse my ignorance on this subject; but is there no coverage available even at a Medicaid level to have a nurse come by and do the blood draws adn IVG treatment?  I am really impressed by your attitutde and what all you have on you.  My first thought when I read depression screen that they were giving it for you.

Lost and Tired

MeLaniSoliMaysenhalder  thanks so much for the kind words of support.  I wish you and your family the very best….

MeLaniSoliMaysenhalder

I can appreciate the complexities involved with medical procedures, supplies, timing, and insurance . Trying to keep it all going can be a full time job in itself. I hope everything comes together for Gavin’s next IVIG infusion.
From: MeLani Maysenhalder, another family with autism and chronic illness 🙂

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