The logistics of arranging four days away are daunting, but doable. It was worse last year when I was trying this for the fist time because I was convinced it could not be done. Armed with a successful trip to New York last year, I knew we could make the Chicago visit work. But it was going to take a lot of organization and luck.
The first thing is to arrange for more nursing hours while we are gone. I have to start that a few months ahead of time because without that in place the rest cannot happen. That requires making and justifying a request, waiting while the Regional Center suggests various options to consider, explaining why those won't work and then waiting for approval. It's a bureaucratic process that takes a couple of weeks, but they came through for Maggie.
Right now we have a good group of nurses, but two of them cannot lift Maggie on their own. That meant they could not do a shift while I was gone because there would not be anyone here to help. I gave them plenty of notice and shifted things around so they wouldn't lose out on shifts.
But Maggie needs someone here besides nurses. She gets too lonely and really mad otherwise. Last year Tim was here to keep her grounded and entertained so that part was easy. This year Tim is in Chicago - in fact that's who we were going to visit. I called my sister Joni. She has two boys away at college and lives about 35 miles north of here - but she works 20 miles north. My hope was that she could do the opposite commute from here. Her husband has a territory to cover and can use pretty much anywhere as home base. Initially she was worried because she said you have to teach me when and how to suction and all that. I assured her the nurses would do all the medical stuff and that Maggie just needed someone else around. She said "All I have to do is LOVE her? That's easy."
They all got along famously. I got pictures and texts and phone calls. I finally exhaled and figured this really was going to work. I didn't realize how well it was working until Joni sent me a text while we were at Wrigley field asking if I needed oxygen. I thought she was referring to the game and made a wisecrack in return. She texted again - NO! The guy just called, do you need the oxygen filled? I laughed my head off at that because I realized wasn't thinking about home at all. I was actually relaxed and not worried (oh and I had the tank filled on Wednesday before I left.)
I checked in frequently. Everything was fine. Every nurse showed up when they were supposed to and Maggie was happy and well cared for. Joni and Vince enjoyed our location and took full advantage of Golden Gate Park and the other amenities of the City. They also had a front row seat on the circus like atmosphere here. She took the dog on more walks than he's been on in a month, got to know the workmen next door and quickly picked up on the quirks of the different nurses. Her texts were hilarious. She even sent me a video of her and Maggie hanging out. (After I saw it I told her how to fix Maggie's headrest so her head would not be so far back. ) If you don't remember Maggie's signs - putting her had to her face is "yes" and slamming her hand down is NO! She has a rather emphatic NO in this video which makes my sister laugh..
There were a couple of moments that caused Joni a bit of angst, though I never had a clue that there was any concern at all. She heard the nurses changing shift early in the morning and though she heard Maggie had a rough night. She said she was downstairs in a flash, but everything was fine. Also, I told her that the school nurse would ride the bus with Maggie on Friday, but I didn't tell her she arrived separately from the bus. The bus pulled up and Joan quietly freaked out that the school nurse wasn't on the bus. She was just about to lose it when Nurse Janice walked up from her car. Obviously it wasn't a problem, but it scared the bejesus out of Joan. She didn't tell me that until I got home but she said she realized right that one little slip by any of the players screwed everything up. She said "I cannot believe how many things have to go RIGHT for things to work in Maggie's world."
The reason I have so much fodder for this blog is that things so often go wrong.But the amazing thing is that they often DO go right. It just takes a lot of organization to get the puzzle to fit and then and a lot of luck to have things go right for four days in a row.
It also takes a great and generous sister and brother in law who were the final and most entertaining piece in the puzzle.