Pep Talks

Before Parker moved to Austin, he, James and I were a pretty tight knit threesome. Like close friends, as well as family. We went everywhere together as a unit. Movies, dinners out, dinners in, Sundays in the fall spent watching football, vacations, trips to the book store. We were pretty tight. So when Parker made the decision to move to Austin, we all knew it was the right thing, but we also knew it would be hard.

His leaving was a lot harder for me than I anticipated. The morning he was to leave, to drive the 2,000 miles to Austin with James by his side, I stood next to his Explorer saying my last goodbyes, trying to pretend it was all okay, that my insides weren't crumbling.

It was pretty emotional for all of us, and there was a fleeting moment when I thought he might change his mind. It lasted as long as two breaths, then he said, I have to go now or I won't leave. With those words, he pushed past the emotions that were going to hold him back, put his foot to the gas pedal and squealed out of the parking lot. The green Explorer looked like it tipped a little to the side when he went around the turn and out of sight.

Yesterday, Saturday, I reminded Parker of that moment when he mentally got stuck in Park. We'd had one good day, really good day, this week (until the stupid exray people dropped him off the table!) but we needed more. I coached him into looking at the big picture, not thinking of the painful moment he was in, not allowing himself to think he couldn't do what was on our plan for the day.

Pain is such a huge part of Parker's days and nights there are many times when he tells me he can't do it anymore. I think I am like a person helping someone give birth. I'm going to take a lot of abuse because of his pain, but my job is to help keep him focused on the positive, or on the big picture. Only this labor is nearing its three month mark. He has been in this pain for three months now!

So yesterday I "coached" him out of his paralysis and mid-morning he sat up, then stood up, then was able to sit on the portable commode for the first time. It was a huge moment, such a relief for him to feel he was making progress in taking back control over his body again. He was a real champion. He didn't think he could do it, but he listened to me and pushed his foot on that accelerator and roared out of the parking lot.

I was so proud of him.

The photo above is of a piece of artwork that really belongs in the Museum of Modern Art, but we are lucky enough to have it hanging in Parker's room. It is a cartoon my Dad spent hours, days, working on for Parker. It brought a huge smile to his face when I was finally able to show it to him yesterday, and he has asked for it to be framed when he is better. For now he wants it hung in his room where he can see it because it reminds him of all the funny-crazy things his grandfather has done throughout his life. And that makes him smile. :-)

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?