Hi Everybody.

Alan is just fine. Normal temperature since 9 p.m. last night. Had a good appetite last night for dinner and a good appetite for breakfast this morning. Took his temp this morning. Normal. He feels fine and took me out for breakfast.

Right now we are going over our testimony for our court appearance later on this pm.

He is raring to go. I will be monitoring him for the next few days.


I also want you guys to know that I did indeed call the neurologist yesterday but she wasn't there so I left a voice mail message detailing everything that happened.

I never contacted the visiting nurse service again. They know what happened and it's all on their head now.

I saved all bags and tubes in separate zip lock sealed bags and they are in my fridge (just in case).

Alan has had 4 home infusion in total (after the 5 in the hospital). Absolutely every single nurse has told me "oh, he can do 3 hour" and every single time I point to what it says on the ivig bag and I say to them "it says 4 hours, I want 4 hours". And they go, "nah, don't worry about it, they are just being careful, if he was going to get a reaction, believe me he would have gotten it in the hospital". I would then counter with "The hospital gave him 6 hour infusions. I DO NOT WANT A FAST INFUSION. I WANT 4 HOURS".

So what have I done while the nurses are sitting in my living room monitoring Alan and just sitting there doing their paperwork in between the taking of the blood pressure and writing down all vitals.????

I speak to them in french. They are so fascinated by a person who speaks french the way I do, that we pass the time and before you know it, 4 hours have passed. I have had nurses leave a bit in the bag and tell me. "this is normal," He has had enough". I then make sure it's 4 hours and then I say okay. I'm not fighing with any of them.

So, so far, it's always been 4 hours, except for Tuesday, when it was a big more than 3 hours. It was a faster drip and Alan was saying "oh, good, it's going faster now, and I would say "Alan, you don't want fast, you want slow, and the nurse said "no, it's fine". Believe me, Alan will never open up his mouth again.

So what have I learned from this. I learned that if the label says 4 hours, I should never allow less than 4 hours and if the nurse starts going into her spiel about "3 hours is just fine, he has tolerated it before, blah blah", I will say "Sorry, we have had problems with 3 hour infusions, he CANNOT TOLERATE IT. THE BAG SAYS 4 HOURS. It really won't matter because before the next nurse comes, (she's been here and she did 4 hours and we spoke french all day and she wore gloves for everything)

Before his next infusion on July 19, I'll be on the phone with the visiting nurse service and I'll have it put on the record that we won't take less than 4 hours.


I'M IN PROTECTIVE WIFEY MODE HERE!!!!!

lol.

Wish us luck in Court.

Melody