Monday, August 4, 2008

And a good time was had by all!

Changes. Not easy for sure, but without them how would we ever learn? We even change grades in school because of changes we make during the school year. I left off here one week ago one very nervous person due to changes taking place in my life of *My Myasthenia*, and somewhat scared of going from one facility and type of treatment to another, from inpatient to out patient, from one that is 24/7, to one that closes shop at 8:00 p.m. BIG DEAL you say. For me it was a big deal. How was I going to get all of that IVIG done in twelve hours, be done with that 1000 ml by 8:00 p.m. at the slow drip I needed? Inpatient, no problem, just let it run until finished. Outpatient, therein lay the problem. They turn out the lights and go home, finished or not. Never have I been finished in twelve hours, and running it at 80 ml caused the really bad headaches. What to do? What would happen? Let's back up to one week ago and see.

For one thing, the trip is much better. Jonesboro is a nice little jaunt for us, a nice hour's Saturday or Sunday afternoon drive, a stroll through Turtlecreek Mall, Barnes & Noble, and with a Starbucks for the drive home. We got an Arby's about 6:30 p.m. on our way to the Annex building where we would stay in rooms provided at a low cost for those needing to stay overnight as we did. It was not feasible for us to drive back and forth every night. Getting over to the hospital was hard enough, much less driving for an hour on top of that . . . ugh!! It *does* take me a while to get this body up and at 'em each day. I try, though, I really do try.

Jim went inside to register, and then came to get me. The room was typical of any hotel room, though a refurbished part of the hospital. The only thing missing was internet connection. No problem. They had a telephone, right? I would just set up an aol dial-up account, and go from there, taking turns as needed. Worked at St. Francis, right? We were tired, and facing a new day, To bed.

Monday morning. Easy enough. Once we pass through the door on floor two where we were we hit the main hospital, we immediately hit the hussle and bussle of hospital life. We follow the yellow brick road the visitor elevators signs, and thanks to Jim's nosing things out earlier, we find the One Day Surgery where the Infusion Center is located. After Jim deals with them at the window, exchanging information, they come around and wrap my arm with a cute little paper bracelet, and we go across the hall to weigh, something we have to do every morning before they send the request to the lab for the IVIG, something new and different. Then a sweet little volunteer takes us down the hall to room 21, where she gives me instructions that I must remove everything, and the nurse will be in soon to take care of things. Everything? Everything. Not said, but everything for an infusion? Evidently. Also, not said, well, okay, if you say so. I comply, and get upon the bed in hospital attire. The nurse comes in, and the first thing she says is, "Oh, there was no need of you getting undressed." ::sigh::

Now comes accessing the port. Yeah. Are you ready? I wasn't, but it had to be done, and it was the lesser or all evils. I told them all the history of my port, and accessing it. They listened, and heeded it, bringing a 1 3/4" needle. Leaving a LOT of detail out about accomplishing the feat, two nurses and I had her infusing in not time at all. Not typical fashion mind you, because mine seems to lay strangely. At least those same few nurses will be doing the accessing each month. That's encouraging. I think we will all remember the peculiarities we encountered.

Now. the rate. What about the rate? Clearly I would not finish by 8:00 p.m. if we went at 12.5 ml/hr. They conferred with Dr. Cauli, and after much back and forth, and finally leaving it up to me, we set it at 80 ml/hr! I say the man is crafty. He had told me he was starting it at the rate I was receiving it at St. Francis, and under Dr. Saeed, which that is what my orders specified. He did what he said he would do. He was true to his word. In the course of conversation between the nurses, he said if I went the higher rate in an attempt to complete it, but was unable to tolerate it, then we would just have to stop the infusion. Aaaha! The woman will build her own web here. If she wants/needs it badly enough, she will see that she gets it. The proof is in the pudding. The nurses and I did a lot of talking, and collectively we came to the conclusion of beginning at 80 ml/hr. Monday, and the week was off to a start, and with a bang of confidence! Yeah. Monday is not a *teller* anyway. Side effects never show the first day, except for the time I was already having problems with them when the IVIG started. Later Monday afternoon we reassessed the situation, and it was apparent that we were not going to get through by 8:00 p.m. What to do? If I upped it to 100 ml/hr all would be well. Oh. my. gosh. What in the world would that be like to have 100 or more ml/hr coursing through my veins? I had no idea, but I was game to give it a whirl, so uuuup it went to over 100 ml/hr, calculated to finish by the magic hour. Now, we sat back to watch and wait by the drip, drip, drip, drip. Bingo! Not quite finished, but no stopping the show as it was going so well. All of a sudden the IV pump brings us from any dreamland into which we may have drifted.


Tomorrow's a new day!

Tracy and Matt at Dillards

Striving for a world without Myasthenia Gravis


Cindy Breninger said...

How's life? My e-mail is :)

ragdoll said...

I guess you can tell by my title that last week went very well. Much better than I expected, and am looking forward to future treatments there. Thanks for the addy.

We gotta get you learning to cook girl! lol

Ragdoll Billie