Restless

I'm pretty tired and cranky tonight. I would have thought I'd feel better after having a few days away from the hospital, but I feel more frustrated than before, not more refreshed. I don't get that.

I spent one night at Parker's apartment (not fun.... see below). I spent the next night at the room and had a really nice time reading and researching agents. The next morning (yesterday) I slept in until 8:am and felt totally spoiled. Watched a disappointing women's final at the French Open, then came to the hospital and visited with John's sister, Nona, and two of her kids (Parker's cousins), Wanda and Tommy.

It was really, really good to see them. Nona shrunk since I saw her last. I pointed that out to her and she laughed. It meant so much to Parker that the three of them came to see him. Then after they left I went out to see my friends who live above a creek out west of Austin. Spent a lovely few hours talking and watching the Belmont (another disappointing sports event this weekend) and visiting with my favorite horse on the planet, Chip.

On the way back to the hospital I drove past the exits for Zilker Park and Barton Springs. I think seeing the signs for those two popular outdoor hot spots might have reminded me a little too much that there is actually life outside the hospital. When I left Maryland in early March it was cold and had recently snowed. Today it was 97 degrees outside and humid. Somewhere in between life happened without me. That has me feeling restless, trapped.

John left this morning. It was emotional for both he and Parker. It feels like we are in a holding pattern. Nothing is getting better (or worse, thank God!) because one thing leads to another and then to another and another, causing hold ups in progress. It's aggravating because a week ago we were making huge strides every day.

Parker still hurts almost constantly (except for brief periods of time right after he gets meds); he still throws up bile at least once a day (today was a whopping 1600 cc's!); he is still too weak to move very much and knows that moving more is key, but then the pain is debilitating. He pushes past it, but there is only so much one body can endure when it comes to pain.

So we are kind of stuck. Waiting. Each day is beginning to blend into the one before. I'm losing track of time. I don't remember what my dogs fur feels like when they lay on the couch with me. I can't remember what book I was reading when I left in such a hurry, or the color of the wallpaper in the bathroom of my new cottage.

But I have my son. Thank God.

Austin

Austin is one of the the most popular cities in the country for young, primarily single people. But almost no one who lives here is from here. Most of the nurses and CA's have lived here only a few years. One of the most fun parts of Parker's and my day is talking to them about where they came from and what brought them here.

Isn't it great that there are now moments in our life that are fun???

Most of the people we've made friends with are young, under 32, and are attracted to the climate which offers year round outdoor activities. There is a constant mix of events like relays, river and lake sports, outdoor concerts, BBQ cook offs, Tex Mex contests, Eeyore's Birthday Festival, farmer's markets, bike races, charity walks, and sidewalk art shows that clog the highways even at midnight.

A big draw to Austin is the unique music scene that gave us Willie Nelson, Stevie Ray Vaughan, George Strait, James McMurtry and many more artists whose music is a little left of center. Austin is known as the live music capitol of the world and has its own a cable channel called M.E. that show cases Austin bands and musicians everyday.

As I mentioned before, the Colorado River runs along the southern edge of downtown Austin, but it is called a lake. I still haven't figured that out, but I have to admit it is lovely to drive over that bridge. The city has kept the shores clean and maintains the natural trees and bushes growing along its edge. All over the city businesses boast signs announcing their work at keeping, or reintroducing, the natural flora of the hill country around their buildings to encourage the wildlife to stay put.

Along with the lakes out west of Austin, which are filled with swimmers and boaters almost all year long, the blue skies of TX seem to deepen their hue right over this city, and the sunsets are magnificent. Over Memorial Day Weekend we watched fireworks explode over the "lake" just on the other side of the bright orange UT tower. Even the fireworks display seemed a litte more magnificent than any other I'd seen. Most likely because I couldn't hear the noise, which startles me like a popping balloon.

Parker has made so many friends here in the hospital and even if they are not assigned to his room on a particular day, that doesn't stop them from popping their heads in to say hello and see how he's doing. He's kind of a miracle patient. No one thought he'd make it, and he did. He DID!!! And all his new friends want to be part of his progress. Not to mention he's just a great guy and people are drawn to him. Especially now that he can talk and his personality is coming out again.

He talks about wanting to buy a little house outside of Austin, possibly near Buda, where he can have a yard and a small garden. And he talks about going back to school, finding what he is supposed to be doing. Why he lived. What is his purpose. What can he do with his life going forward that will make a difference. He talks about that a lot.

When this ordeal is over, before I go back to MD, we are having a big party on one of the lakes and we're inviting all the people who have contributed to his getting well. Also we decided that each time I write (starting the next time) I will write a little bit about each of the people who are a part of his day. Each of them have their own stories, sort of like the ponies in The Tugboat Chronicles. We want to be sure we capture their personalities, and a little of their life stories, on this blog as they have played a huge role in the biggest challenge of Parker's life.

John comes today. Parker has no memory if his being here since before he went to ICU. I know this made John sad, but he has to remember, Parker knew at the time he was here and that made all the difference in his recovery. The medications have an amnesia effect on purpose, and there is so much of the last two months Parker doesn't need to remember anyway, it is just as well. But he is eager to see his Dad, and feeling a little emotional about the reunion.

I will be clearing out and spending a few much needed days off at Parker's apartment. I need sleep, but I think it is a luxury for me to be able to step aside for 48 hours when Parker is chained to this disease, to this recovery, and he gets no breaks at all.

I love you Parker, and I miss you James.

Best Day Ever!

Wow! What a day! First, after my super-spoiled afternoon yesterday I slept in this morning until 7:15am. I knew that Monica had been his night nurse and Yonus was going to be his day nurse again today so I felt okay not getting there before 6:am as I usually do.

Here are the highlights of the day, bullet-pointed as my brother suggests:

* I saw, with my own eyes, Parker's heart rate go UNDER 100 several times throughout the day. There was a time when getting down to the 130's was huge, but he is getting close to a normal heart rate now. So sweet. I took a photo when it was at 111, thinking that was going to be so super-duper, but later on James and I both watched as it fluttered down to 99, 98, 97.

* We had Yonus as our day nurse, so I knew he was going to be cautious and do everything in Parker's best interest. Some of the younger nurses will only do exactly as written by the doctors, so the other day when Parker's stomach kept getting bigger and bigger and bigger, the nurse wouldn't stop the tube feeding until she had reached the doctor and he said to do it. They are afraid of the doctors. Yonus is so capable and has over 20 years experience as a nurse, and he knows what the boundaries are but also knows his job is to care for the patient, not massage the doctor's egos.

* Yonus was concerned about the bed sore on Parker's back, so he called the Wound Care PT people and the woman came, took a photo, put the cream on and actually showed us the comparison to the last photo. It looked better! But see? Yonus wanted to be sure, so he wasn't going to wait for them to come around the next day, he took action. That's why he is so good.

* Parker was more alert today and rarely needed any extra pain medicine. He said he really liked having a clear head. We talked about so many things. He had a few moments when he got very emotional and he couldn't understand why. Personally I can't see why he doesn't get it, anyone would go crazy after what he has been through! But Yonus explained to him about ICU psychosis, which happens to people who have been in the ICU for a long time. Especially when they have been without a window, like Parker has been for 5 weeks now.

* Yonus encouraged Parker to talk and to cry and to feel everything he needed to feel. At one point, when Parker was sleeping, he woke up crying and talking about missing the sounds of family. He got weepy about lost loves, and again when he read cards from old friends from Maryland (cards that have been sitting on the shelf, waiting for a day like today when he had enough strength to hold them in his hand). I think because he was so clear headed today and is beginning to be able to realize what has happened, and what almost happened, over the last two months, it is pretty overwhelming.

* James sat next to Parker's bed for most of the day. When Parker slept (which wasn't much) James read his book. When Parker woke up, James put the book down and they talked about all the things that they talk about that I don't get. But I sat in the other corner with my eyes closed, just listening to the sound of my sons talking to each other, and I thanked God for that gift.

* Parker practiced with his passe meir (not ver as I wrote before, sorry...) valve and then we made a BIG phone call. We called my parents. I know what it meant to them to hear his voice, and I was really happy he was able to do it, it takes so much energy. My Dad said afterwards that I was to tell Parker This was the best day they have had since the Cowboys won the Super Bowl! That, of course, is a little inside joke.

* Parker had his NG tube capped off for several hours today and they resumed a minuscule amount of tube feedings. I wasn't crazy about the idea, I don't want to risk anything like what happened the other night, but I knew having Yanos on guard meant nothing bad would happen, he would turn it off if and when it needed to be turned off. AND he would do all the little things he knew to do to check and make sure stuff wasn't building up in Parker's stomach.

* We found out that the reason he is always so thirty is because of the anti-fungal medicine he has to take for the nasty yeast infection. When the NG tube was suctioning today, Yanos let Parker have water (since it was just getting sucked right back out), which made him SO happy.

* Parker sat up on the side of the bed again today. It takes a bit to help him up because he has no abdominal muscle strength at all, but once he was up he sat unassisted for about 3 minutes again before it hurt too much and he had to lay back down. But every time he gets up, it works the abs and the gut and moves him towards everything working again. It was great.


* No fever, no more lasix and no apparent swelling, he is off all antibiotics (except the antifungal for the yeast), the ultra sound people came and checked his legs and found no evidence of blood clots, he had good gut sounds, got grumpy at times, laughed at other times, and we all smiled a lot today.


* Rumor has it we still might be moving the the Intermediate Care Unit on Tuesday. I am elated and terrified at the same time.


Today I was standing outside Parker's room when an old man was wheeled by on his bed. A get well balloon was tied onto one of the railings and floated along with him. The man must have been 100 years old. Maybe more. I smiled as he passed by and he reached his other hand out and said, Hey I'm graduating today! Can you believe it?

So Spoiled

I am feeling so spoiled today. After two months of sitting all day, every day in a dark hospital room, watching the flashing neon numbers that tell me if Parker's heart rate is going up, or blood pressure is going down, or heart rhythm is mis-firing, or temperature is going up..... I am taking the afternoon off.

It's a little scary. James is here (can I tell you how incredible it feels to have someone else here with me?) and is going to spend the afternoon sitting with his brother so they can talk. When James left to go back to MD to take his final exams, Parker had been unconscious for almost three weeks, so Parker doesn't remember that he was here.

Well, let me rephrase that. Parker KNEW at the time his brother was here, and I know without a shadow of doubt that his hearing James' voice that horrible night, knowing he was here, made a difference, helped Parker turn a corner. On that first night they told me we were losing him. But depending on when you ask Parker if he remembers James being here, you will get a different answer. It depends on how much medication Parker has had when you ask him. Not how much he'd been on before.

Anyway, so James is going to go sit with him, Parker will put his new passea ver valve over his trach tube so he can talk to James (even though he says it makes him sound like an old lady) and James can catch Parker up on all the news about the Cowboys, the movies that have come out over the past two months that they would like to see together, and all the other things that are particular to their relationship as brothers who love each other so much.

And me? I am heating up the Vidalia Onion Dip my good friend Meridy sent me, and I am going to eat it with Lime Tortilla Chips while I watch BOTH Rolex and the Preakness on tv and soak my feet in the hot water foot spa my Mom just sent me (with a whole lot of chocolate in the box, too!)

Can't quite beat that for a rainy Austin afternoon off, can you???