Why Not Wyoming?

I took this photo last summer when I went to Wyoming with my niece, Kensie. We went a year ago today, to be exact.

This is one of my favorite spots on earth, Schwabacher's Landing. If you were ever looking for a reason to believe in God, watching the mountains change color while the sun rises behind you, with the reflection in the water .... well it would be hard to walk away from that and not KNOW.

Anyway, the reason I was thinking about this today is that I was making my plane reservations to come home to MD in September. I am trying to lock in a price so that, if all goes according to plan and Parker continues to heal and is back at work in September, I will be coming home.

But while I was on the airline web site, typing in Austin to Baltimore, I accidentally typed in Austin to Jackson, WY.

Then my little brain started clicking and I thought, Well, why not? This is my chance! Why not just head west instead of east? Live my dream! Move to Wyoming! Do it! Now! It's what you've always wanted! Life is short! Carpi Diem!

I thought about all the years I have longed to live in the shadow of my Tetons, the years I have stepped off the plane on vacations and felt that rush, and heard a voice in my head and my heart that says, Ah.... Home! I thought about the simple life that would be required to live there, and I felt cleansed of burdens. I wondered if I would ever tire of looking at those mountains who define the word "majestic", the mountains that rise arrogantly up from the sagebrush flats like no other mountains in the world... the youngest mountain range in North America that refused to evolve in the normal way, shrugging off foothills in favor of a bracing wall of beauty.

With my finger poised over the keyboard, about to correct my mistake, I could feel the clean mountain air filling my lungs, and in my mind I could see the thousands of tiny white lights entwined in the antler arches in downtown Jackson, covered in snow, twinkling like my own personal fairyland.

I heard that noise the heart shaped aspen leaves make in the summer when a breeze flutters through the forest and they clink against each other, branches waving from atop stark white trunks against a Tiffany blue sky. And I remembered the feeling of dipping my toes into the cool water of the Snake River after a long ride across the flats, after watching a young elk try to woo away his lover from an older stag who fought with the maturity of a wise man.

I thought of the drive up Spirit Dance Rd, the switchback mile that curves back 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.

And then I remembered the one time we went over New Year's, Parker, James, Nancy and I, and we almost got stuck because they had to close down the airport due to a snow storm. They said it would have taken us three more days to get out. They offered to put us up in a hotel and give us a stipend for food while we waited, if we would give up our seats and stay. I would have done it in a heart beat, but Nancy was homesick. She didn't say it, but I could see it in her face. She was afraid of being trapped that far away from home. So we got on the plane and left Neverland behind.

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.

I remembered how scared I was the night Parker first went into the hospital in Austin, when I had to wait until the next morning to get to him. A mere 12 hours, as opposed to three days. And I knew I wasn't ready to make that move. It isn't time just yet. The fear of not being able to reach a critically ill loved is too fresh, too near to my heart. In fact, it still invades my dreams when I sleep.

So I did the responsible thing and I hit the key that changed the direction of my flight, to take me east, back home to Maryland, knowing that Wyoming isn't going anywhere, and at another time, my day will come.

Close Your Eyes

While I was looking for this photo to post today, I had to scroll past many others to find it. I paused at a lot of them. Like the photos taken from ICU when Parker was hooked up to the machines which kept his lungs breathing, his kidneys working, his heart beating, his abdomen draining of the poison that almost killed him .... twice.

I paused at the photo of his sitting up the first time, and they day he stood on his own two feet, with Lindsey and Martin and three others surrounding him for balance. He stood that day for 20 seconds.

I cried when I saw the photo of he and Lindsey and Miranda walking away from me, the first steps he took in the hallway without the walker. I teared up at the way Lindsey had her hand very gently against his back, and the way he had to hold up his pants because they were falling off. And I smiled when I remembered both girls looking up at him and exclaiming, Wow, you are really tall! We had no idea!

I love the photos taken the first time he went outside and looked up at the trees and the sky, another of the cup when he got his first glass of water, and when he got the tube out of his nose (the first time). Other favorites are from when he had his first piece of watermelon, and the car transfer and stepping-down-the-curb test from rehab.

But this one, the one above, is my favorite of all time. He is so ALIVE!

Thank you God, for bringing my son back to me. Thank you for sitting next to him all those months, and for letting your Light shine as to heal him. Thank you, thank you, thank you. Now, what can I do for you?

Below are some rather graphic photos of the skin graft. Don't look if you have a queasy stomach. The first was taken three days after the surgery. The mesh looking stuff is his flesh. They "harvest" the flesh from his thigh with a machine that looks like a cheese slicer. Then they run that flesh through a machine that stretches it out and makes it more likely to attach to the wound. Then they place it on the wound and stitch plus staple the whole thing.

The other photo of that area was taken this morning, 13 days after the surgery. Most of the donor skin has attached with the exception of one small portion where Parker's belly button was turned underneath after they had to open him up on the Abdominal Compartment Syndrome day and leave it open for so long. Parker was hoping they could retrieve his belly button and pop it back onto his stomach when they did the graft, but they couldn't. They threw his belly button away. :-(

There is also a photo of the site where they harvested the skin from his thigh, taken this morning, and one other of the trach site. it's amazing how much better he felt once that trach was out of his windpipe.

All these photos mean to me that Parker is alive. We continue to work on physical therapy, on endurance and conditioning. He hasn't driven yet, and being out in the open still makes him feel slightly disoriented. But he is walking great, and this morning when I woke up at 4:am, I tiptoed into his room to check on him, and he was fast asleep on his stomach. For the first time. I went back to bed with a smile.

P.S. Wow, the FedEx guy is probably laughing because the last time he came, not only did he make me jump, but he brought me a very welcome gift from a good friend who sent a gift card to Central Market. Same thing just happened, and it couldn't have happened at a more appropriate time! Thank you SO much Chuck and Barbara, for your generosity and thoughtfulness. Hopefully this is beginning to wind down and I will (hopefully) be home soon.

Wonder

I'm so tired I have to take a nap before I write about the events of the last two days, but I couldn't lay my head on the pillow without first sharing this photo of Parker. No trach, no tubes, no wires, no wound-vac, no wheelchair, just plain old Parker. My son.

I miss you James. I'll be home soon!

So Much To Tell

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, Whew, okay NOW I can sit down and write!

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.

Red Bird

There's nothing like a new mattress pad, new sheets, comforter, pillows and a good book to make for a good nights sleep. And what a difference that can make on the outlook of a brand new day.

We are hopeful this morning that the MRSA news will be only another little bump in the road, not cause for backtracking. We are taking extra precautions ~ I have never washed my hands so much in my life ~ to be safe, and will wait for more information from Dr. Turner when we go to see him in his office tomorrow.

This morning I woke Parker up to give him his medicine early because he can't take the doxycycline within 4 hours of one of his other medications. I made him sit up on the edge of the bed for half an hour (as per the NIH web site recommendations so it doesn't stick in his esophagus and cause him to throw up like it did yesterday) before going back to sleep. I felt like Nurse Ratchett.

Anyway, while he was sitting up waiting, we noticed a red bird outside his window, jumping around in a bush and landing on the window sill. I told him it was Dovie, his Dad's mother who passed away about 12 years ago. She loved red birds, and the day she died a red bird came to the window and sat there with her until she passed. Since then we have always thought of her when we had cardinals around. Dovie was definitely one of God's most precious angels when she was alive. I've never known anyone like her.

After Parker got himself moved to the living room, the red bird appeared at that window, too, dancing around in a different bush outside, looking at us through the window. A sense of calm came over me and I knew it was Dovie.

She's here to tell you everything will be okay, Parker. She wants you to know. You're going to be okay.

Others can call me crazy, but I knew it like I know when someone is about to call me even before the phone rings. There are some things you just know.

I took this picture when I drove out to Buda not too long ago. This little pond is on the old dairy farm where John and I lived. I used to ride my horse up the big hill in the background, with Little Bit and Missy following me. I just think the picture is so funny, the cows are so funny. Sort of like, Great minds think alike.

P.S. FedEx just banged on the door and made me jump. A gift card to Central Market just arrive from someone who has turned out to be a really good friend. It's funny how things like true friendship weed themselves out during a time like this. Thank you Crystal! Just in the nick of time, too! SO appreciated!

At The End Of The Day

What a difficult day. We both feel like we were kicked in the ass as we exited the hospital yesterday with the whole MRSA thing. I'm trying not to get hysterical, but all day I kept having memories of Parker when he was in septic shock with the VRE. I cried a lot today. Hopefully more in private than in front of Parker.

He had quite an emotional day himself. He had his own set of memories coming to him, thoughts of waking up in the ICU, remembering the night he couldn't get to his phone to call the ambulance, looking at his swollen stomach with the retention sutures in it and wondering how he was ever going to get through the pain he was in, begging for water and only getting the green lollipop sponge things to rinse out his mouth..... All these thoughts made him very emotional.

Thank God for Dustin. I was going to go get new mattress stuff and sheets etc. for Parker because he's had so much trouble sleeping on his old mattress since he was in the hospital. He woke up this morning in a lot of pain.

I didn't know not to give him Doxycycline while he was laying down.... it made him throw up twice in a row, both times it was bile. You know how scary bile is to us now. So I didn't feel like I could leave him here alone. His leg where they harvested the skin for the graft hurts like a *%&$@#*)!@! and he can't get up and move around easily, so if he had to go to the bathroom while I was gone he would have been stuck. And he had quite the stomach issues this morning in addition to the throwing up. So I called Dustin and asked if he could run an errand for me.

Not only did he run this awful girl-errand of buying mattress pads, sheets, pillows, trash cans and tons of disinfectant at Walmart, but when he delivered the stuff to the apartment, I know he saw we were really struggling with the day. He made up some excuse of not wanting to get into the traffic to go home, and stayed with us and made us laugh a lot for several hours.

I sent Dustin and email and said that at the end of the day, if you can look in the mirror and say you made a difference to someone else, then you can say you had a good day. Dustin had a GREAT day today! So many thanks for knowing exactly what we needed today.

Thanks, also, to so many of our friends in IMC who reached out to us today through emails, Facebook and text messages to be sure we were doing okay. You, too, made a difference.

P.S. I forgot to mention that the lung doctor who was on call last evening did come and did finally take the trach out. He didn't want to because Dr. Shapiro didn't want to until after the sleep study. But Parker was determine, and MAD (oh, so mad!), so he agreed and took it out. Thank goodness for that.... :-0

What Next?

I wish I could say our homecoming was full of jubilation and joy, but we got a huge kick in the butt as we exited the hospital yesterday which has thrown us both for a loop. We're not sure exactly what to make of it, except that neither of us have stopped washing our hands since we got home.

The plastic surgeon, Dr. Turner (whom we both really liked a lot) called right before we left to tell us that the culture he took of Parker's wound on his abdomen cultured MRSA.

We don't really know how alarmed to be, but for people who are not usually in a clinical setting, it is really, really scary. The last time we had to wound care people at the outpatient place (before the skin graft surgery, last week), I saw two little bumps that looked like pimples on the top part of the wound. I asked the nurse about them and she said she would have the doctor look. The doctor looked (this is a doctor we have only seen twice, not one of our regular docs, and not one from Seton), and both Parker and I remember how she backed out of the room to answer our question, but she never told us anything about what it might be!

So yeah, I'm pretty upset about that. Either she didn't want to bother to look closely enough, or she didn't want to "get involved" since she knew it was out last time at the outpatient place, but for whatever reason she let us go about our merry way without alerting us to the problem.

I'm pretty sure I will be calling her today. That is simply wrong. It isn't her fault that he has MSRA, I know that. But shouldn't she have told us so we could have alerted the hospital? Our doctor's office? The surgeon?

Or how about just so we would know and get a head start on the treatment????

On a lighter note, here are some more pictures of the people who helped us during our lengthy stays at Seton. All the people on this site made a huge difference in the success of our lengthy hospital stay, and all of them deserve special thanks!

At the top with Parker is the last nurse we had, Bronwyn. Her sense of humor kept us smiling on an otherwise tense day.

To the left is Kim, the friendliest CA ever, who never seemed to have a bad day, never got flustered or aggitated, and always had a pleasant smile and greeting for me when I arrived in the morning. Kim runs the desk on the IMC floor.

This is Laurie, our Case Manager, who used her east coast attitude to make things happen for us with the insurance company when they weren't being cooperative. She really worked her butt off for us (our insurance company wasn't always very cooperative to deal with) and we appreciate all her efforts more than she can imagine. Laurie grew up right near Bay Head, so we had a common bond from the start.

And this is Stacy. She was our nurse our very first day on IMC way back in the beginning of April, then she was our nurse the first day back on IMC when Parker came out of ICU. She was also his last night nurse the other night, right before we left. Thanks for the tour, Stacy!