Friends

Today's posting is about some of the friends we have made here at Seton Hospital. I'll give a progress report tomorrow on the capping off of the NG tube.

First, our friend Amy, formerly referred to as a Pixie-Person. Amy has this remarkable way of making Parker smile, no matter how horrible he feels. As you can see in the photo, Amy knows her role is not only as a friend, but as our own private cheerleader. She is 4'11", was raised in Salt Lake City, raises goats and makes cheese from their milk, taught English in Brazil, has a culinary degree but decided being a chef wasn't as much fun as just plain old cooking.

Amy comes barreling into the room in the morning, throws the curtain back and announces, It's going to be a great day Parker, 'cuz I'm here! Amy is going back to college to become either an RN, or a Surgical First (I think that's what it is called). Parker said she should be an RN. She is definitely one of our favorite people ever and we are always happy when we see her name on the list for Parker's room assignment.

I've written about Red before, but here is a picture of him. Red worked with us when we were on this floor before ICU. He encouraged me to finish reading The Shack, for which I am extremely grateful. He is a unique character who has a huge heart, but won't take any fuss from anyone. I would guess he is a lot softer than he wants anyone to know under a pseudo-gruff exterior. He has a wry sense of humor, is well over 6' tall, and brings homemade cookies to share when he works at night. He knows a lot about plants, doesn't own a computer, and goes hiking on Wednesdays with Amy.

Red said I could put his picture up but he wouldn't pose because he said he isn't photogenic and it would break the camera, and I couldn't get a picture of the top of his head because the flash would bounce of his baldness. He, too, makes us smile.

The only other photo I have so far is of Jim, fondly referred to as Boston Jim. We first met him when Parker was in ICU which is where Jim normally works. We were happy he was Parker's nurse upstairs today... kind of a bonus. The first time I met Jim, Parker was still unconscious. Jim came in the room and saw the Red Sox playing on tv and said, Oh good, we'll get along great if you like the Red Sox! He said that to Parker, not me. Parker, of course, didn't respond because he was still on the ventilator and wasn't aware he was even in the room.

Jim is from Boston. He is a self-proclaimed "dork," to which James responded, I'm a Physics major, I know all about being a dork! Jim's claim to fame in our life is that, until today, every single time he worked with Parker we had huge throw up nights. Like the nights when Parker was swimming in vomit. We have one hour to go on Jim's shift to break that spell.

Even though Jim is from Boston, he has an accent that sounds to me like Mississippi. He was very helpful to Parker today in dealing with some challenges he had, helped him understand that sometimes you have to look at the tiny details to see the progress he has made. I am grateful to Jim for those words.

Get The Truck!

What an exciting day! A day we thought was going to be one of the worst, has turned into one of the best. God has a funny sense of humor at times.

Parker walked 50' today! FIFTY FEET! He held the walker and went. Everyone who saw us stopped with their jaws to the ground and exclaimed, Look at Parker!

Martin stayed up front with Parker, I followed right behind him with the wheelchair and when he said he had walked as far as he could, he sat down in the wheelchair and we wrapped him up in a blanket and pushed him OUTSIDE to the courtyard off the third floor! OUTSIDE in the fresh air!

When we got to the courtyard, Parker tilted his head, looked up at the sky and let silent tears fall. He didn't have to say anything, both Martin and I knew what they were for. He asked to be pushed around near the plants, so we walked around the entire courtyard and stopped at the statue of Elizabeth Ann Seton (as in Seton Hospital) for a photo shoot.

It was enough to wear anyone out, the emotion of it all. But as we started back, Parker asked Martin if we could go to the ICU. He wanted to see it again, and he wanted to see Yonus. Talk about an emotional journey.

We walked The Green Mile and I explained to him why I called it that. We rounded the corner to his room, and it was empty. Yesterday afternoon there was a Code Blue called to ICU-A and I had a horrible feeling it was to the room he had been in for those 6+ weeks. I didn't ask, but the room was eerily empty. Spooky. Parker looked at it, dropped his head down and cried some more.

We went to find Yonus, who was in a different part of the ICU. There were two "issues" going on at the same time, one in the room where he was working. We saw Brittany and she went to get Yonus. He told us later she said, "Yonus, Parker's back!" He thought she meant back in ICU, but when he saw us in the hallway his face lit up in that fabulous smile that only belongs to him.

Parker cried some more when he came out, and told him he'd wanted to come down there to see where he had been so sick for so long, and also to see Yonus because he had been so significant a player in his recovery. Yonus put his hand on Parker's shoulder and said, It is so good to see you, Parker, you look so healthy!

That was about all the ICU any of us could take. I'm not sure how I lived down there for so long with out going nuts. Or maybe I did go nuts and no one told me yet. Parker wept the whole way back.

I can't believe I was in that place for so long, Mom. I can't believe I made it out of there. That room .... those hallways .... those sick people, was I that sick???

Going down there today made it clear how far we have come. How far Parker has come, how hard he has worked, what he has accomplished. I thought about those weeks when he lay on one of those beds like a big lump, unconscious, kept alive by machines and people whose hands I had to trust to care for my son, to save his life. Those weeks I lived in the ICU waiting room, waiting for him to come back to me, when I turned his life over to God because that was all there was left to do.

Thank you God, for not letting me down, for letting Your will be the same as mine!

Now he is sleeping in his big, sun filled room on the 4th floor. He has slept since we got back, his head tilted off to one side, his NG tube falling out of his nose a little crooked, his SuperHero pajama shorts on, and the beep, beep, beeping of the machines hooked back up to him.

There is much more for me to write about the feelings of today, but right now I have to rest. And absorb. Then I'll write. Parker insisted on my putting up the photo of the two of us. I told him in the other photos, he looks like a convict and Martin looks like the prison guard. We laughed about that because when he took his first steps toward the hallway this afternoon, at the start of our journey, he looked at me and said, Mom, get the truck!

Red Badge of Courage

Just when I thought he had shown me all he had, Parker rose to the challenge before him and pushed himself past what progress was expected or hoped for this entire week. And it's just past lunchtime.



This was supposed to be one of the hardest days he has faced since coming off the ventilator in ICU. The night was long and weary, as can be seen from the post I wrote below at 4:am TX time.



This morning when Eric came (the Occupational Therapist seen in the photo) Parker got that determined-little-boy face on, stood up for a total of 10 minutes (that was the total for the whole day yesterday), PUT ON HIS SUPER HERO PAJAMA SHORTS (with assistance, but he did most of the work himself), brushed his teeth while standing, combed his hair while standing (which is tricky because reaching his arms over his head causes him to lose his balance and once he fell back onto the bed faster than Eric and I could catch him), AND marched in place!


Parker, YOU are my hero!



His reward is that this afternoon, after he does his endurance work of marching in place, Martin and I are putting him in the wheelchair and taking him out to the third floor courtyard for his first breath of fresh air since April 2nd! More photos later!

City Lights

It is a little after 4:am. I can't sleep so I am watching the lights of downtown Austin twinkle in the distance. Downtown is very small when compared to Houston, or DC, or NYC. But the view from anywhere outside Austin is actually quite nice. Probably because it is small.

Parker has begun to feel the effects of coming off the Dilauded. Lots of pain overnight, lots of anxiety, feeling panicky ..... everything the GI doc told me last night was about to happen. I don't know whether the best thing for Parker is for me to cut out for most of the day or for me to stay. My maternal instincts say stay, but something makes me wonder if he will go through it faster if I am not here for cushioning. Regardless, I can tell it is going to be ugly.

On a good note, his abdomen is noticeably flatter since yesterday. If nothing else this means his stomach and the top part of his small intestine are empty so the pressure is off the ileus. This should encourage it to heal. Let's hope. We are SO ready to go!

There is a woman in another room who cries and weeps when her husband leaves at night, and she doesn't stop until he returns the next morning at 6. One and a half hours to go.

Three Months

Parker and I wanted to thank the nurses and CA's today for their part in helping him make it through three really tough months. We've got a long way to go, but there are people on this floor we have not only made friends with, but who often bring us the only bright spots on difficult days. We wanted to do something to recognize their part in his recovery. Something small.

Nurse Nancy (tall Nurse Nancy, not the short one we asked to not have come back....) told me about a neighborhood not far away she thought I would like. All the nurses AND the doctors are encouraging me to leave the hospital for a few hours each afternoon, so they made up a list of places to go that are not far and are free or super cheap. This afternoon I made a trip to a half price used book store that has fat, cushy chairs placed throughout the store. I spent several hours leafing through the pages of a book on Wyoming photography.

Later I stopped at Quack's Coffee Shop and bought some funny cookies for our friends. That's what the photo is of ... the cookies. I got the lobster cookies because I miss Bay Head, the gingerbread men because they were motorcycle men and made me laugh, the flowers for obvious reasons (hello Hoover-Fisher!!!), and the rainbows in case any of the people here were gay.

The cookies were a hit. Amy and Jessica got theirs first and, after I pulled out two for Lisa who won't be here until tomorrow, the others pretty much flew out of the box. And yes, one of the guys was very pleased I thought to get rainbow cookies.

Parker had two good PT and OT sessions today. PT worked on endurance stuff ~ marching in place, standing as long as he could stand (today was close to 6 minutes including the marching), sitting in the big chair so we can push him out to the courtyard someday soon. OT started working on things like standing to brush his teeth, comb his hair, leaning left and right so someday he can put on his own socks and pants again. Anything to do with every day life that he has to re-learn how to do. Once again, thank you God for the opportunity to have to re-learn these things.

Dr, Driskoll said the lab reports suggest a possible blood clot formation again so he is increasing the Lovanox and will have the ultra sound people come and take a look at his legs again, just to be sure. I'm glad he is being cautious.

Tomorrow will be the first day Parker's Dilauded is reduced by half AND he won't get the extra pain med Dr. Garcia gave him for a couple of days. Should be swell..... :-)

The Healing Wall

Today marks the three month anniversary since Parker first went into the hospital with a case of acute pancreatitis. Three months!

This photo shows only a small section of Parker's get well wall. You can only see 1/3 of the cards and notes and drawings we have hung, they wouldn't fit in the window. But for those who want to know, these make a huge difference in his spirits.

NG tube went back in yesterday morning. By the end of the day it had suctioned out so much nasty, gross and disgusting stuff from his stomach and upper part of his small intestine, I can't believe he wasn't more cranky and complaining more about being nauseous. Truly.

So now we are waiting for the stomach to decompress, which will take pressure off the small intestines and hopefully help resolve the ileus. They have begun decreasing the amount of Dilauded he gets (apparently he was on a super hefty dose for a long time) and I imagine by tomorrow I will be hearing about it from him. But if we don't get him off the narcotics the ileus just isn't going to go anywhere. It is holding us back from moving on to a rehab center.

For the first time last night, actually at 4:am this morning, Parker was able to feel the sensation of needing to go to the bathroom (sorry, if you aren't used to the graphic details by now, stop reading). We worked lightening fast and got him unhooked from the NG tube, the trach tube, the heart monitor, breathing monitor, BP cuff, moved the catheter and the wound-vac machine out of the way, unplugged his IV pole, got the bed deflated, and Parker up and onto the commode in record time! Without pain meds! It was a really big deal. It meant to him that he is getting a little more control over his body, which is huge. Of all the things he has gone through ~ other than finding out we were told he was dying twice ~ this aspect of his illness has caused him the most distress.

So that was last night. His nurse for the past few days, Miranda, is off now and we have the slow moving nurse who let him go without pain meds for 3 hours over Easter weekend, right before he went into shock. So I will have a conversation with her if I see she isn't keeping up with what he is now allowed to have. Miranda is the one whose brother-in-law is the center for the Oklahoma football team and is expected to go in the 4th round of the draft next year.

Amy is here today but not working in Parker's room. But she popped her cherrful little head in for a few minutes and I will ask her to check on him for me during the day while I am out.

Spirit Dance Road

This photo was taken from the top of Spirit Dance Rd. in Wyoming. Parker drove to Jackson Hole one summer and worked at a resort on the top of this butte. This was the view he saw every day. The Tetons are in the distance, and in the valley is a ranch I covet like no other.

This is going to be a rough week and I think it's important Parker and I both remember the end will justify the means. The total suckiness of this week is going to push us past this point, one huge stride closer to the finish line. Parker wants his life back. He wants to go home. So do I, trust me. But neither of us can until he is well and this is just one of those steps back we have to take in order to rev ourselves up and zoom forward.

Dr. Garcia put the NG tube back in this morning. Parker panicked a little (understandable) but it was over fast enough. That's the benefit of having a surgeon who has taken Parker's case to his heart and will come and do that kind of thing for him, rather then leaving it to a clumsy nurse who might have to do three tries before getting it in correctly.

He threw up a huge bucket of bile right before it went in, and since then it has sucked out almost 1800 more cc's in less than two hours. Imagine carrying all that around on your stomach. Ugh. Barf. Gross. But it is visual progress. For me, anyway. He is pretty pissy right now so I'm leaving him alone, as per his request. Only Amy and Lisa have been able to get a smile from him today. Thank God for those two smiling faces.

Keep your eye on the prize, Parker! We're coming around toward the back stretch!

Careful What You Wish For

So after a meeting today with the surgeon, the gastroenterologist (sp?), the pain management team, the nurse and the internist, it has been collectively decided that the answer to the ileus issue is to get Parker off the narcotics. Meaning the pain meds.

Over the next 5 days his pain medication will be reduced to nothing. In the meantime, tomorrow morning he will have the NG tube put back in to decompress the stomach and whatever gas and bile is trapped above the ileus (anything he doesn't throw up overnight).

This is NOT going to be easy for Parker as dealing with pain takes up a lot of his days. If we may ask for more prayers to get us past this next week, we would be eternally grateful. Other than the period of time when he was on the ventilator and not aware of what he was batting, this likely will be the most difficult push for him. Hopefully the end result will be his being able to be transferred to a rehab facility, the last stop on his journey.

Please pray, send positive energy, think good thoughts and funny cards. He needs it. Thanks!
P.S. I am writing this from my Blackberry. Pardon any misspelled words. :-)

Help! Help!

There is a new person a few doors down, an old man who keeps calling out "Help! Help!" No one responds and it breaks my heart. I understand, but it still breaks my heart. He sounds like my father.

Rough Night

Maybe I should have kept my mouth shut about things being stagnant.

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.