Are We There Yet?

Tomorrow I will take my son home. It is only for two weeks, but he will be home for the first time in four months and a day. I am filled with a mixture of emotions that filter through my heart as softly as a piece of lace falls to the floor.

There will be time for reflection later. Right now my job is to learn to change the wound dressing on his abdomen every day, to keep the trach area clean, to chauffeur him between daily doctors appointments, out patient wound care and physical therapy appointments, as well as act as chief cook and bottle washer at his new apartment, dietitian, and probably shrink for a while as well. This is all okay. This is my job right now.

A mother does whatever needs to be done to save her child. In this case it means temporarily leaving behind the life I had in Maryland ~ my other son, my cottage, my two beautiful golden retrievers, my job, my elderly and ailing parents, my photographs, my almost finished manuscript .... everything that made up my life before that now infamous text message I got four months ago tonight.

I'm in the hospital, don't call me!

Silly boy...... Don't call?

Today James and I, together with their Dad, got Parker moved to his new apartment, so when he comes home tomorrow it will be to not only a new life, but a new lifestyle. A couple of photos are below of the new apartment.

Today I also had my lesson in changing the dressing on his wound. As many times over the years as I have changed bandages, cleaned out pus and blood, picked out stitches and dressed wounds on horses, there is something really awkward about doing the same thing to your son. So I pretended he was a horse. I had to keep telling he and James not to speak so I wasn't brought back to reality, but it was the only way I could get through it without gagging. But I did it, and I will do it again tomorrow and Sunday. Then Monday morning the new doctor will see it and start to do it herself everyday until we have the skin graft done.

But tomorrow, for two weeks, he gets to be at home.

:-)

New Life

This is Parker's brand new apartment that James, their Dad and I are moving him into on Friday. Then, on Saturday morning, after two hospitals, four months and a day, James and I will be bringing Parker home. At last.......

Car Transfer Test And First Step Down

Parker and Elizabeth, his wonderful PT person. This was his first attempt to get into his car and it went perfectly. He also took his first step off a sidewalk today. All this in preparation for his discharge on Saturday.

Today I am off to buy him new clothes, and things for his new apartment. He has no dishes, no glasses, no pots or pans or forks or bath mats .... nothing.

James arrives tomorrow evening and his Dad will be coming to help us get moved on Friday as well. Whew!

Is This How It Will End?

The stress of this day just might do me in. I was supposed to spend the day at Parker's apartment getting it ready for him to come home. But first thing this morning he called and asked me to come to the rehab hospital. He was throwing up again, couldn't keep anything down, and was frightened. Throwing up is how the whole pancreatitis thing started, so when he throws up a lot, in his mind it is coming back.

I went to the hospital, thinking I would be there for only a few minutes, but he was so wound up, having so much anxiety and stress, he couldn't stop crying, he kept apologizing to everyone who came in the room, saying he didn't know what was wrong.

It's okay to feel this, Parker. It's what you need to be doing right now! Cry! Get it out! This has been such a long, horrific journey, the stress you are experiencing is normal! You don't owe anyone an apology!

So that was Thing #1. He asked me to stay during PT. The original agreement we had was that when he went to rehab I was going to stay away except in the evenings for dinner. I felt it was extremely important for him to work through this stuff without me, for him to learn to care for himself without my being there, especially considering his anxiety over what has transpired over the last four months. I wanted him to know he could pick himself up if he fell into the water.

But he asked me to stay today, to go with him. He was terrified. He started throwing up in PT. The PT Assistant, some bozo with no common sense, said something incredibly stupid to Parker that made him feel like complete dog breath. Our very nice PT person, Elizabeth, told the jerk to go away and shamed him for being so insensitive. I do have to say, as the Mama Bear, it took every bit of composure and restraint I had not to launch myself on the guy and pummel him with both fists. Not very Quaker-like, I know. But you just don't mess with a mother's kid.... It's The Rule!

So Parker gets back from PT and the doctor comes to talk to him about his anxiety. Then she asks to speak to me privately outside. She says she isn't concerned about the pancreatitis coming back, she thinks the throwing up is from anxiety. Then she tells me she wonders if it would be better for him to not have me there all the time to fall back on.

Uh, yes, I explain, I agree with you, that was the original plan. BUT! The psychologist working with him on all this stuff said that if Parker feels he needs me right now, that's where I should be. He said with everything he has been through, his anxiety is valid and normal. So what am I supposed to do? Who do I listen to?

The weird thing is, right when I was ready to move away from all this, when we were in IMC and I was looking forward to spending my days writing or out walking or doing something other than sit by his hospital bed, that is when he started to realize the magnitude of what has happened to him. So he started to panic and wanted me to stay. So what do I do?

Thing #2 was a real blower. I left the hospital to go to his apartment and start getting it ready to be cleaned up and move his bedroom to the one across the living room. When I walked in, there was so much smoke ~ tobacco and otherwise ~ I could barely breathe. Beer cans are falling out of plastic bags all over the house, cigarette ashtrays have fallen on the floor, the cat is walking through them, the kitchen has mold growing in two bowls of old milk and cereal sitting on the counter.... the place was disgusting and stank to high heaven. Or hell is more realistic. One of the roomies is sitting on the couch smoking a joint. Now I really don't care who smokes pot and who doesn't, but the realization of what I was bringing Parker home to hit me in the face pretty hard.

He has an open wound on his belly which will no longer be covered with the wound-vac by the time I bring him home. He also has a trach ~ an open pipe straight to his lungs, and has just recovered from a super serious illness. I went into his bedroom, closed the door and burst into tears. I had no idea what to do. Where was I to take him? How was I to manage this?

I went to the apartment manager guy I met two weeks ago and explained that there was no way I could bring Parker home to a smokers house, and it wasn't fair to ask the current residents to stop smoking. I told him there was no way the hospital would release him under those circumstances. So he worked with the main management people and got him into a two bedroom apartment on the ground floor. It costs more than his current apartment, but it had to be done. I can pick up the keys on Friday morning and move him that day to be ready for his homecoming on Saturday.

Two problems. #1, I can't move him by myself. Especially in 105 degree heat. I am not strong enough to do it.

But problem #2 was the real kick-in-the-stomacher. I called the rehab case manager on my way back and she thinks the insurance company won't even let him stay until Saturday. I explained about the apartment issue, and she said, While we here at the rehab hospital are very concerned about those kinds of things, the insurance company doesn't care.... they don't care if he doesn't have a home to go to, they don't care if he doesn't have anyone to help him, they don't care if he doesn't have a ride home from the hospital. They say that's not their problem!

Wonderful. Super-Duper. So after four months of being critically ill, it comes down to this. I may not have anywhere to take him if he gets out too early! Swell. On top of that, if I took him to a hotel, then who is going to stay with him while I move him myself on Friday?

After pulling myself together, I called Parker. Not to burden him with all this, just to check in on him. He couldn't stop crying again. He thinks he is totally weird for this uncontrollable crying. I am glad he is crying now, he is starting to process this stuff and work through it before we get home. But that doesn't help him.

All he wants is his brother to be here when he gets out of the hospital. To help him through this.

Once I was able to make that magically happen, Parker settled down. I can't say I blame him for wanting James here. I need James's steady hand right now as well. And James will help us get moved on Friday. No matter where Parker is, we'll get that done.

Thank God. And thank you James.

I am going to sleep now. I have to be up at 5:30am to clean out Parker's car so we can do the car transfer test at 8:30 tomorrow morning. Good night. Thanks for listening.

PT Time

I watched Parker's second physical therapy session today. The work he is doing is very slow and it always amazes me how weak his body really is. For instance, today he stood on a spongy rectangle step thing with his heels lower than his toes. It was being done for him to build strength in his ankles. He tried to stand without touching the parallel bars for one minute. It took several tries before he was able to do it for the whole minute, and then he was so exhausted he had to sit in the wheelchair for a rest.

It's like his body is not his own. It frustrates him, makes him sad, makes him mad, makes him feel defeated and makes him want to fight more at the same time.

More than anything right now, he wants to go home.

P.S. Tonight we are having dinner delivered courtesy of our friend Davis Tucker, from his restaurant North By Northwest here in Austin. On the menu? We are sharing an appetizer of shrimp and crab cakes that are served on top of a mango and red pepper salad. Next we each have a small green salad (Parker is getting the Basil Arugala and I am having my favorite Field Greens with Apples, Walnuts and Blue Cheese). If we have room left, we are sharing a beef tenderloin that comes with wild mushroom risotto. Thank you again, Davis, for your very generous gift.

For beer drinkers, rumor has it NXNW has one of the worlds best brewmasters, too!

At The End Of The Day

At the end of the day I am exhausted. I feel more tired than the minute before, and there are moments when I don't know for sure when this will end.

I miss James, I miss my cottage and my two golden girls. I wonder what "normal" will look like at Christmas time this year. Where will I be? Home? Here? Somewhere I'm not expecting? How will I know when I find normal again?

Lunch At Wimbledon

Breakfast at Wimbledon turned into lunch at Wimbledon (see post below). What a great match! Only drawback was that Roddick didn't win. He never lost his serve until the very last point, he broke Fedderer's serve twice (Fedderer won two sets in tie-breakers), and in my humble opinion, Andy should have won. It was a great match, finished with 15 to 13 games in the last set. Unbelievable!

Breakfast at Wimbledon

Most of my adult life I have been in Bay Head over July 4th weekend with my family. The Wimbledon Finals were the focus for me and my Dad, and we had our own version of Breakfast at Wimbledon ~ chairs pulled up close to the tv, coffee mugs in hand, and blueberries with cream. When Parker and James were little they joined us, but as my siblings families grew (there are six of us), so did the crowds in the house, which kept my own kids at home. We aren't crowd people.

This year Parker and I are celebrating Breakfast at Wimbledon in Room 827 at Central Texas Rehab Hospital here in Austin. I brought the blueberries, but no cream because it doesn't go along with Parker's "no-gallbladder-low-fat" diet. Where ever you are James, we miss you!

This is Day #3 at the rehab hospital. Parker has had several visitors from "down below," Lindsey from PT, Amy, Sherrie and Courtney from the 4th floor. These visits have done a lot to help Parker transition from IMC to rehab. Believe me, it is a totally different level of care up here. We knew it would be, the focus is on physical rehabilitation, but the change in nursing care is very obvious.

Here's an example: Yesterday I asked the nurse to look at the area under Parker's trach because it was really red and the gauze stained in red and brown.

Nurse: I don't do trach care.

Me: Can you ask the Respiratory Therapist to come look for me then?

RT: I don't do trach care.

Me: Then who does?

RT: She does, the nurse does it.

Nurse: I was told not to touch it.

RT: No, I was told not to touch his trach, that you were going to do it.

Nurse: I don't know how to do it.

RT: Well, I was told absolutely not to touch his trach.

Nurse: We never do trachs up here except Derrick and he isn't here.

RT: Well, I'm still not doing it. You're supposed to do it.

Me: Okay, both of you, out of here, I'll do it, go!

RT and Nurse as they are walking out of the room: I'm not supposed to do it; No, I'm not supposed to do it.....

So Parker and I did it. Today we found an RT we knew from downstairs and he came and cleaned it up for us. He did tell me the RT's aren't supposed to do it anymore "because they don't get paid for it," but he doesn't mind helping us out. Jeez! I'm thinking they have no clue how bad that looked.

With the exception of yesterday morning when Parker threw up, then had intestinal issues, followed by an emotional meltdown during PT, he has done very well here. He walked a total of 350' on Friday which was a record! He is working on the parallel bars on squats to strengthen his quads, doing side to side walking with me tossing a balloon back and forth to him (and yes, of course it popped!). He has dressed himself, walked with shoes, made his bed, and this morning he is getting his first shower since March. Yea for the shower!

His wound vac was changed yesterday morning. Below are two photos. The first is the wound on May 16th after a month of healing. He was in the middle of his first ileus, so his belly is bloated like a pregnant woman's, and he has the retention sutures in surrounding the wound. The second is how the wound looked yesterday when the PT Wound Care girl changed the vac. Huge difference in the depth of the wound. We are considering pushing up the skin graft surgery to get everything done sooner and give Parker more time to rest up before he returns to work.