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.

Survivor

I should have known I am too old to live in an apartment with 3 college kids, one loud cat and a dog who is apparently not house trained, even just for 72 hours.

Parker's roomies have no sense of courtesy. 4:05am this morning they were STILL going from bedroom to kitchen and back, yelling to each other about who ate the last of the pizza and why'd the dog get into the trash. At 4:05am thank you very much. Then something made me sick. Every time I threw up I thought of Parker and told myself to toughen up. I'm pretty sure I am over my fear of throwing up.

Other than allowing myself the luxury of laying in bed all morning, clicker in hand, watching a really good tennis match at the French Open, I was pretty miserable over there. Since John is staying at the hospital anyway, I came back to the room at the League House for the rest of my "vacation."

Parker had a rough afternoon yesterday, and even worse night, and the worst morning in a long time. They had the short N. nurse last night, the spazzed out woman who tried to stop Dr. Morrison from taking him to surgery until she could give him a bath. I told John to watch out for her, to be sure she didn't get near Parker. He found out why when Parker threw up all night and was choking on the stuff he'd aspirated through his trach and she wanted to measure his urine output while John was trying to clean out the trach so he could breathe. Then she was stupid enough to ask John how she measures the urine, was it this number or that one? What a dumb*%&#.....

His pain level had become unmanageable, and this morning one of our favorites, Nurse Sherrie, discovered that the iv line for the Dilauded had a leak in it. No telling how long it had been that he'd actually had any pain medicine, but it apparently had been like that all night. We love Sherrie. She rode with Parker in the ambulance the day he had to go to Round Rock for the CT scan, the day he went into shock and had to have his first surgery. He still remembers how she held his hand and let him lean against her in the ambulance.

On top of the pain, his digestive system is still fighting him, and when Lindsey came for Physical Therapy today it was a nightmare. The doctor came in and said something about the NG tube and both Parker and John burst into tears .... Parker will do anything to not have that NG tube put back in because he thinks they will tell him he can't have water. The doctor re-read all the notes and discovered the problem with the pain meds, and also saw that Parker has been able to get some things past the ileus, so she changed her mind and upped his meds again to give him comfort. Whew! Saved by the diligence of a thorough nurse and a compassionate doctor who took the time to find out what other reasons might still be making him throw up.

His belly is huge, swollen from the ileus and gas and water that is accumulating on his abdomen. They've put him back on Lasix and upped his iv fluids, too, in an attempt to get it all straight. I haven't seen the kidney doctor for days, but Parker's BP is also higher than normal again, probably from the fluid retention.

When I got there today to deliver his lime and cranberry juice, he was working with the OT guy, Eric. Even with all the pain he'd been in, all the throwing up and diarrhea, Parker still wanted to stand, wanted to walk, and tried his darnedest to get to the chair, but couldn't because he was so exhausted. Eric told me he was really impressed with him, after everything he'd been through over the last 24 hours that he was still pushing himself.

Then the wound care guy showed up to change out the wound vac. That always causes Parker more pain (if I thought you had the stomach for it I'd show you a picture) and he hates having it done. But Parker is having company tomorrow. His aunt and two cousins are coming to see him and he is so excited about it he doesn't want to be in pain or miss out on any of the visit. So when the wound care guy offered to come back tomorrow because of how difficult the last 24 hours had been, Parker said no, let's get it done now, get it out of the way.

I already hurt, might as well get it over with so I can see my family tomorrow when they come.

I was mighty proud of that boy. Eric, the OT guy, was standing outside the room with me when we heard Parker say that. I looked at Eric who shook his head and said,

It doesn't surprise me, Parker is an inspiration to all of us in Physical and Occupational Therapy. He's got more pain, but also more courage than all the other patients on this floor put together.

That, Parker, is why you will walk out of this hospital someday on your own two feet! You're tough, a survivor, like the bison in the photo.

72 Hours!

I have 72 hours to call my own. Wooo-Hoooo!!! John is here for a few days and is staying at the hospital with Parker. I slept at the room in the League House last night for the first time in almost a month. It was weird and I wasn't sure how to sleep on a real bed anymore.

After checking in this morning and talking to the doctors a bit, I am now at Parker's apartment with big plans between now and Sunday morning. I am going to: research agents; edit some more of the book; sleep through the night THREE TIMES; watch the French Open; have a bubble bath; eat chocolate (oh darn! I forgot the chocolate!!!); visit a friend; sleep some more; edit some more; watch the Belmont for a lot of hours on Saturday afternoon; and with any luck.... NOT worry!

Parker is moving forward with great progress. Little concerns about his edema and the amount that has swollen his abdomen even more, but they gave him a little bit of Lasix yesterday and might again today. The concern is that his blood pressure is up slightly as a result. But I am trying not to think about it.

I had an email from a friend yesterday who told me James had expressed concern for my welfare, for the fact that I live in that hospital room and sleep in the chair and don't eat well. I love him so much for that concern. A part of me feels a little guilty that I can walk out of the hospital for a few days while Parker is still unable to get up and walk out himself. Don't worry, a couple of good nights sleep will get me over it.

For then past two days Parker has walked twice a day, and has started sitting in the big chair, trying to get used to being vertical. His equilibrium is all off now, and he gets dizzy quickly. His muscles are weak and he feels like he started two-a-day practices three days ago after a summer of lounging in his pajamas. Meaning he is sore. But! He's alive! Sore = alive and thank you God for that blessing!

The picture is of bluebonnets and indian paintbrush, both native to Texas and abundant in the spring. I put the picture up because it is of a meadow, and my goal in life is to live in a meadow. The picture is a gentle reminder to keep my eye on the prize.....