And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Wednesday, November 2, 2011


Well, our doctor did an amazing job of getting the orders submitted on Monday.  She hoped to start all of the treatment on Monday, but said she understood it would probably take until Tuesday.  Thus, my treatments were supposed to start yesterday.

However, I ended up spending almost three hours on the phone yesterday afternoon with the pharmacy, home health co., and doc's office.  It was unbelievable.  My doc did an amazing job of writing the orders and getting everything submitted clearly (the prescription stated treatment on 11/1. 11/2. and 11/3.  However, the pharmacy and home health company somehow got confused.  It was frightening.  We kept saying, "If I was an 86-year old woman that was trusting these people to get it done right..."

The pharmacy was late getting everything delivered to the house.  Then, the Home Health company called and said they were on their way and I told them the meds and supplies had not been delivered yet.  They said it was no big deal because they were only supposed to do admit paperwork.  I explained that the doc was very clear that she wanted treatment started Monday, but was settling for Tuesday.  He said he would make it happen.  Then, he arrived and told us he had parked at the end of the street because he couldn't find our address and just started walking up the street until he found it (that inspired great confidence)!!!  Did I mention he had GPS, too?

Home health then said that there was no way they could start the treatment yesterday because the treatment would take too long (4-6 hours) and he had another appt. and they couldn't find another nurse that was trained in how to administer these treatments.  Another confidence builder.  So, they promised they would send out a new nurse Wed-Fri to administer the treatments.  This was after they told me this guy was the best in the area, but he wouldn't be able to do it...yikes!!!

The courier finally arrived with everything from the pharmacy.  I thought I remembered having to refrigerate something last time.  So, when he arrived, I asked what needed to be refrigerated.  He said, "maybe something in that box, they didn't tell me to refrigerate anything."  So, I called the pharmacy and they said they forgot to label it because they were trying to get it out so quickly.  Confidence, anyone?  What if I was an 86 year old woman and couldn't even lift the box and just left it at the door until today? 

So, when I asked what needed to be cold, they told me two things.  I was then transferred to someone else who said not those two things.  It was amazing.  The pharmacist finally got on the phone and told me what needed to be refrigerated.  Then, she told me to take it out in the morning prior to treatment so it could reach room temp.  She actually told me that if I kept my house close to the same temp as hers (and what would that be?), I should take it out about three hours before the treatment.  Otherwise, maybe one or two hours, but make sure it's room temp when you get the infusion, but you don't want it out too early either.  Anyone else confused...?

She also said that she assumed that I remembered how to do it all since I had this treatment done before...I reminded her that my memory has been severely affected and I don't know my name certain days.  As well, the last time we did these treatments my seizures went berserk and thus I have very little recall of the process, but she's trusting me to properly store and handle the medication.  Not to mention that reading is still a huge seizure trigger for me and so trying to read each package for instructions would only cause more seizures.  Which it did last night as I tried to get everything organized for today.

We have some sweet friends that own a Home Health co. and we tried to get it set up for them to come do the treatment, but the pharmacy wasn't willing to pay them (that's apparently how home health works: Pharmacy gets paid a lump sum by insurance and then they pay for home health from that lump sum).  Our friend seems to know exactly what she's talking about and was building our confidence in the way it would all play out...she even called the pharmacy to try to make it work.  They said, "no, we would have to pay all of the out of pocket difference and we are talking many hundreds of dollars."  So, she gave us some tips since the old home health co. basically blew all of my veins last time.

B spoke with the nurse that should be starting my treatment today and she gave us the exact opposite advice from our friend (who explained why those methods would hurt more than help).  So, if you've not already gathered it, we are begging for prayers for the Lord to be in complete control since the pharmacy, home health, etc., are not comforting us. 

Please pray that:
*the treatment will run smoothly
*I can still love on my sweet little girl
*they can find a good vein and not blow it so it's available for the rest of the treatments
*the nurse truly does know how to administer this treatment safely
*B will be able to get work done from the house since we know he needs to be here to watch over the process since they don't seem to be on their game and if my seizures do increase like last time
*God will receive the ultimate Glory despite my yucky attitude right now in how these seems to be unfolding!!

Thank you precious Prayer Warriors!  I pray you find joy sitting in our Big Daddy God's Arms this morning talking to HIM!!!

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