Saturday, July 5, 2008

Next in store at St. Francis

While I was still down in Admit/Holding, they went ahead to access my portacath. The first thing I did was to tell them what I had been told to tell them, "It takes a 1.5 " needle." Okay, I had done my part. Here comes the first one. First one? I thought the purpose of the port was to eliminate all those sticks, and keep it down to this one stick. My mistake. Uh, my misunderstanding? Aha, now I see why. The first one was a no-go, and then someone else came over to try their hand. It was a repeat, and since the the IVIG would not be ready until Thursday, they decided to just leave it alone until morning.

I was lying up there resting from the day, and these words, "You've got a room," wafted through the hazy mist until it actually became a reality. (For some reason I picture Casper) Huh? What? Me? Really? Me? I've got a room already? Four hours. Excellent. Chris went about piling things on top of me for transport to *My* room. He would drive Oscar up later. He threw a sheet up on the bed as we left for our journey to 3-West, and off we went. I didn't get to see Linnie this time. Missed you Linnie.

It was fun getting upstairs. Room 317. Chris, and whomever it was that came with him (sorry, but too much has happened since then and I cannot remember her name) were light-hearted, Chris with a spring to his step, and a mischievous grin on his face. They were working with the corridor floors so we had to detour through ICU. *That* was when he was acting like he was going to throw that sheet up over me. When we got around to my room, they got my bed unloaded, and Chris got my computer plugged in. I just had them pile everything over on the couch and recliner. That is where my bags stayed for the remainder of the time.

Thursday morning started it all. All being getting my port accessed with a blood return. That is all that got done until shortly before 4:00 p.m., attempting to access my port and get the requisite blood return. "A little stick now," was what I heard so much. Finally, I was just too tired from it all, for in addition to the needle sticks was all the twisting and probing after they got in the port, with them applying pressure on the it after they were in. I told them that since a blood test would be the only use of my veins, that I was okay with going ahead and infusing in a vein, and maybe trying later for the port, but for now, forget it. It seems my port is in fairly deeply Yes, we could try the port later, but I was ready to stop. So, the one last person (to my knowledge) went about to make the attempt. All of a sudden she said, "Don't move!" She was beginning to get a little blood seeping her way down the tubing. This has happened before, so just because we can see it, that doesn't mean it's a sure thing, a done deal, all wrapped up and ready to go, but . . . there it comes! We're in! The IVIG has been ready and just waiting on us. She said, "Let me go get the bag," and left, but quickly, and excitedly she was back to hang it. Time? Exactly 4:00 p.m. Thursday. Off we go! Five days tethered to the pole.

The most notable point of this whole hospitalization was less pain, and less headaches until the last day or two on the IVIG when they did pick up in intensity but the percs and lollies sufficed quite well. No screaming scalawags!
The treatment plan is to keep on with this reduced mestinon that Dr. Saeed and I talked about, and started in the hospital. For how long, I am really not sure. We will be seeing the new neurologist connected with the infusion center in Jonesboro soon, and he may have ideas of his own to throw into the pot. For how long we stay at this level, I have no idea. I guess with each IVIG the effectiveness will be assessed until the doctor feels it is safe to make a reduction in the prednisone. So, I guess it is sit back, relax, and let the IVIG treatments do their thing. I want to get all better tomorrow. That is not reality. It is always the same, though, isn't it. I get to feeling better, have these ideas of what I want to do, what I want to be, who I want to be, then WHAM! down I go again, though I don't think I was down as far I normally am just before treatment, and I'm not all washed out afterwards for a few days after coming home.

It was wonderful the way I got to see so many and say a "good-bye." The 3rd floor, East and West, of St. Francis - Bartlett rocks! I just want to start listing each one, but know I would forget someone . . . without fail, but I am sitting here picturing each individual one, and how great each one was, and of course is, day in and day out without fail. This gives me a really warm feeling, and brings a smile to my face. Now you know they must be pretty remarkable if I can still say this after the way they pierced my port so many times Thursday. I still loved them all, even after that. Ha! Ha! Jokes from that day. In a funny sort of way, it *did* almost get comical.

I hate to close this post. It feels like I am closing a chapter in my life. Guess I am, huh? I have been with these people for over a year, and it just isn't easy at all letting go. Maybe it is best to just say, "I'll see you later."

My room with the bed turned against the wall to accommodate Oscar
Emergency entrance leading to Admissions to check-inER entrance

In Admissions, Evelyn, a great representative for the hospital

Striving for a world without Myasthenia Gravis

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