It's been a while since I wrote. I thought being home things would settle down and I would have more time to write ~ Tugboat Chronicles and Finding Normal ~ but it hasn't been until today, this very moment, when I thought,
This has been a roller coaster week for sure. First the excitement of getting out of the hospital for the last time (knock on wood!), followed by the crashing when we found out about the MRSA. The fear of the unknown and forcing myself NOT to go to Dr. Google because it is too scary, and even the NIH and Mayo Clinic web sites were too scary to read.
Tuesday, our first day home, was a day filled with emotions. We both know it is to be expected, but in retrospect it feels a little like that whole day we were on the verge of not getting past it. That was the day Dustin came and ran the errands for us, then when he got back with our goods, he knew we were not doing well. I know he knew because he stayed. He gave an excuse that he didn't feel like getting back out in all that traffic, but afterwards I realized he had seen our red faces and knew we needed him. Dustin doesn't live far enough away to worry about traffic, no highways involved. He just knew we needed him to be here, so he stayed.
Wednesday was the day we saw the red bird following us outside. The Dovie red bird. She hasn't been back. Guess she knew we got the message and she went on to coach someone else.
Then our A/C broke that night. The maintenance guy who came to fix it reported in his broken English that it couldn't be done until the next day. We cranked up all the fans in the house and prepared for a hot night. Fifteen minutes later the maintenance guy came back and said he had a window unit at his house and he would be happy to bring it over and set it up for Parker in his room if he needed it. SO nice! We said no, we were okay, but went to sleep touched once again by the kindness of strangers.
Thursday we went to the plastic surgeon. It was so incredibly hot that day, and we laughed a little when I couldn't get Parker up the hill in the wheelchair, so he had to scramble with his legs while I pushed, only to realize later one of the brakes was still on. :-) When Parker scrambles with his legs to pull the wheelchair forward he looks like a crab stuck on the sand, scooting forward with his claws. It's pretty funny, especially when he is listening to music and using his hands to lead an orchestra at the same time.
Dr. Turner was very pleased with the way the skin graft looked. He said it does not look infected, but he wanted to keep the wound-vac on for another few days (till Monday). He was pleased also with the thigh, where they harvested the skin from for the graft. I took an updated picture of the graft but left my camera in the car...... more later on that fiasco.
After that we went to Seton for the wound-vac to be put back on. Saw a lot of friends and I also saw Br. Baughman (sp?), who is Dr. Bissett's partner. They are the infectious disease docs. I felt bad cornering him in the hallway to ask questions, but someone made me do it. :-) He knew immediately who Parker was and said Dr. Turner had been in consult with them about the MRSA. Apparently Dr. Turner must have known or suspected because the IF docs told him to put Parker on the IV Zyvox while he was in the hospital, and made the recommendation of the antibiotics he is on now.
Dr. Baughman said Parker was on Zyvox when he was in ICU, it was one of the three broad spectrum antibiotics he was on for those weeks when he had the VRE diagnosis, and the course of treatment now for the MSA is appropriate. He wasn't too concerned and, in fact, said as long as Parker was in the hospital he would have been surprised if he hadn't ended up with MRSA. He said once the graft heals over, the MRSA should be under control. I have to ask more questions about that because I still don't really understand.
Friday we were both exhausted and Parker woke up an emotional wreck. He threw up twice in the morning, which always makes him worry about pancreatitis. Then his stomach hurt, and soon after he started having that pain in the area where his kidneys are, which we now know was the pancreatitis pain in the beginning. So he freaked out, was really upset and scared. I called three of the doctors and they all said the same thing: the throwing up was most likely from the doxycycline, and the pain was probably from his retching. Muscle pain.
Dr. Daghestani has a way of making me really feel comfortable about things. He explains the why's in language I can understand, and never makes me feel stupid for it. He didn't just say, Oh he isn't having pancreatitis again. Instead he said, Well we know he doesn't have a gallbladder to cause pancreatitis, he isn't drinking alcohol, he doesn't have a fever, he isn't throwing up bile, and he isn't doubled over in pain.
He also told me most of the time pancreatitis can be treated as an outpatient, but they would never do that with Parker because of his history. But, he reminded me, the first thing a doctor will do is rest the pancreas by putting him on a clear liquid diet for a few days to let things rest and settle down. I thought about religions who fast for 24 hours every week and wondered if they ever got pancreatitis.
I relayed all this to Parker and soon we were both a little more settled. But we still had so many bad memories of what has transpired over the last almost 5 months. There is a lot to process, a lot to get through. But we will.
Saturday we both woke up really late, but felt better. Parker said mentally he felt really good, so we decided to go out of the house and on a mini-road trip. We'd wanted to drive out to Buda (see photo above), where his Dad and I lived 30 years ago. We would go see the old dairy farm where our house was, as well as drive through old town Buda. When I lived there 30 years ago, Old Town Buda was just plain old Buda. Wonder what that means about how old I am, if the town I lived in is now called the Historic District. :-0
We were having a grand old time, driving down the highway, chatting away, Parker talking about his life going forward, holding his little Wound-Vac bag in his lap, smiling, laughing, happy and feeling good, when I heard a clink-clink-clink of the car. The thermostat was all the way over in the red zone and within seconds smoke started coming from under the hood. Argh!!!
To make a LONG story short, at first I panicked about Parker being stuck on the side of the highway in the 103 degree heat. But we limped to a gas station a few miles away and parked in the shade. Called AAA, called on Dustin who once again came to our rescue, and pushed Parker's wheelchair out of the heat and into the Texaco station where we waited to get a ride home.
All in all, after our initial fears, his spirits stayed good and he dealt with this like he would have pre-illness: it is what it is, and we just have to do what we have to do to get things fixed. Parker isn't used to being anxious and nervous like he became in the hospital, so I was happy to see a little bit of my old son returning.
The rest of the day we decided to treat like we were having a snow day when the boys were little. But instead of hot chocolate, we made green sun tea on the patio and we watched six hours of the John Adams HBO DVD that my sister sent to us. It felt a little like a snow day, the magic of suddenly not being able to do the same old dreary stuff we did every day, to be stuck inside unexpectantly, to have an extra day together, a "free" day. When you are a single parent who shares custody of your kids, those "free" days are like gold. We miss you James!
Later in the day we talked about a plan for his return to work and my return to MD. I have to talk about it in little pieces at a time because A.) I still can't imagine my leaving him here, and B.)he is still afraid to be alone. But incorporated into The Plan was the thought that I would go somewhere for a few days after he returned to work and before I really left, so I could sort of practice. I know that sounds weird, but don't judge until you have walked in my shoes.
Of course my thoughts wandered to my own personal Neverland, to the unattainable joy of a short trip to TriangleX in WY for four days where I could ride through the aspen forest and along the Snake River, and watch the moon set from my front porch each morning while I drank my coffee, and see the elk fight for their herds, and the eagles fly above ~ all this in the shadow of my Tetons which always make my heart feel settled and my soul ready for any challenges ahead. I took out the lottery tickets I bought at the Texaco station while we were waiting for our ride home when the car broke down, and I studied the numbers as if I could make the stars align just right so I would win and could go to WY, and buy my boys good, dependable cars, and make a contribution to the League House so people who have loved ones in ICU can have a place to stay even if they can't afford it.
I think that's what is called a pipe dream. But for some reason, that particular pipe dream makes my heart feel happy.
I took this photo last summer when I went to Wyoming with my niece, Kensie. We went a year ago today, to be exact. 
wn personal fairyland. 
and forth up the butte, winding past more sage, more wildflowers, more baby deer hiding in the tall grasses, and I wondered how I would feel, if I worked at the top of that butte, how I would feel every day in the winter when I had to make my way back down to the bottom, praying I wouldn't slip off the edge on the ice and snow. 
But when I thought about that day, and the frightened look on her face at the idea of being trapped, I also thought about Parker having been so ill, and my Dad having two kinds of cancer, and James being alone at school in MD, and I realized, this isn't the time for me to do that. To live my dream. Not yet. Not if there is a risk of my getting stuck and not being able to get to my family in an emergency.
