We Made It!!!!!

WE MADE IT!!!!!!!!!!!

Parker's going to Rehab on Monday!!!!

More later, just wanted to share the news.

You did it Parker! You did it!!!!

The Universe

This is my Dad throwing shells for Peach at the beach in Bay Head. I miss Bay Head something fierce this morning. I miss my Mom and Dad, and I worry about my Dad. He's been holding his cancer off long enough for me to be here with Parker, but when I talk to him, I know he can't hold it off forever.


I know he isn't really "holding it off," but that somehow God knew I couldn't take care of both things at once ~ Dad's cancer and Parker's illness ~ so He gave us a little reprieve until Parker is well. But I feel an urgency this morning to go see him. Maybe I shouldn't be listening to the Beach Boys on my MP3 Player. It's only making me more homesick. The fact that Wimbledon is on makes me more homesick for Bay Head, but I will celebrate gettikng to watch it with Parker for the first time in a few years.

Decisions have been made, at least as far as we are concerned. Some doctor might show up today and change our plans, but I can't control that.

Parker has decided to go to rehab first, hopefully Monday or Tuesday. After he is finished there, he'll go home for a few weeks, get his life back, breath, sleep in his own bed, rest, let the wound heal, then come back the end of July or beginning of August for the skin graft surgery. Hopefully that means he'll be ready to go back to work the late August. If it all works as we hope it will.


More later. I think I need to go to Bay Head and I have to check airlines.

Decisions ..... Decisions

The last 24 hours have had us spinning. I just asked Nurse Sherrie to put a sign on the door stating "Do Not Disturb!" so Parker can have a few moments of quiet time.

* Which Rehab facility is the best one for Parker?

* Should we do the skin graft surgery first?

* Or go to rehab first then come back for skin graft?

* What are the risks of each?

* What happens to each of us after he is done?

He's coming off a lot of meds but taking new. Still trying to get his gut to work properly. It seems it is either feast or famine.

We've had reps from three rehab facilities come to give us their sales pitch, then they said, "Oooops wait! Don't have a private room available!" Parker still has to be in isolation so we have to wait for a private room.

One doctor wanted to move us to a regular room now, and thank God Dr. Garcia came in and put the brakes on. He said Parker isn't ready to go anywhere yet, we've come this far over this long a time, we are not rushing until he knows Parker is stable.
Thank you!!!!

More later, am off to try and get a nap in the midst of crazy.

Where's my Mental Meadow????

Freedom

This morning for PT Parker walked all the way to the human elevators (as opposed to the employee elevators which are closer) unassisted. He asked for only one mg of Dilaudid first, instead of two, and he seemed more balanced. I need to go get his sneakers from his apartment. Ugh. I hate going over there.

After his walk we wheeled him to the 8th floor where the rehab center is located so he could have a tour. He loved it because they have real showers. Also because it is in the hospital ... in case of emergency and also because he has made friends here and really hopes to be able to see them once he leaves.

Parker felt the most freedom he has in months today. The tube is out, he is eating real food and not throwing it up (except when he had to take a pill after lunch, which always makes him gag), the catheter might come out today, the TPN will be discontinued (meaning one less attachment), and he is transitioning to oral meds, which is a requirement to be able to go to a rehab facility.

Freedom is the name of my photo above. I thought it was appropriate for how he feels today.

Changes

When I went to visit my friends who live west of Austin, I saw these rocks arranged in their driveway. Curious, I asked about them and was told the child of a friend put them together a couple of months ago. My friends told me they love the little boy so much, they couldn't move the rocks away even though they were in the middle of the driveway. My friends are those kind of people, genuinely good, kind people who are touched by the magic a little boy leaves behind.



Yesterday was all kinds of crazy. The morning started out fine, except Parker and I were both a bit on the cranky side. I had wanted to go sleep at the room for several nights, but there are a lot of changes going on, and ever since Parker realized what happened to him in ICU he has been especially anxious at night and wants me to stay. I have no problem staying, although I am sure the people here think I am a little nuts. That's okay, I probably am. But before I am anything in life, I am a child of God and a mother of two boys, and if my son is afraid because he still thinks he could die from all this, then I will be here for him.



Just as I know I will have my own mental collapse when this is over (hopefully not until I get to Bay Head and sit at the edge of the ocean and watch the osprey and cry....), Parker has a lot of emotional stuff to weed through, too. He still has nightmares about that abrasive anesthesiologist telling James and I to expect Parker not to make it through the surgery (see April 22 posts). I refer to that experience as verbal rape. I know the guy had to tell us the risks, but he was so aggressive about it, and so inconsiderate to yell at us in front of all those other people sitting in the ICU waiting room..... anyway, I will process that another day.


Whew! I wasn't planning for all that venom to spew out this morning.



Courtney was our nurse for the day yesterday. We really like her. She is calm, smart, and quietly compassionate, which is exactly what we needed. That's her picture over there....... >>>>>



The best news of the day is that Parker's guts worked independently from the new medicine he is on. I will leave that sentence alone, you can decide for yourself if you want to understand exactly what it means. But this was one of the best things that has happened to him in a long time. We both cried, then laughed at ourselves for celebrating a pile of poop. Ooops, sorry.



I ran into Allison in the hallway, she asked how Parker was, and I told her all about the morning experience with the delight and pride of a mother's whose child just won the National Spelling Bee. Then in the elevator I couldn't stop laughing, thinking How weird is it that someone asks how my 25 year old son is and we talk about poop?


PT was good, although in my humble opinion I wish Parker would try less Dilaudid before he does walks because I truly believe, on top of everything else, it is making him wobbly, and he would have much more success without it. But! I am not the one with the open wound, the wound-vac, the healing ileus, etc., and I certainly do NOT want him in any more pain than he has already experienced.



After PT I went to the room, presumably for the rest of the day, planning to come back around 8:pm after I had a nap, two or three showers, did laundry, and lay in bed reading my new Thomas Jefferson book in a quiet in a cold room by myself. But Parker called within minutes of my getting there. Dr. Garcia had come by and was so excited about Parker's progress with the Relistor, he told Parker, You may be ready to leave by the end of this week!



We both know Dr. Garcia is extremely optimistic, so we translate that to sometime next week. And even that sends a flood of excitement and fear and happiness and anxiety through both of us. Parker asked me to please come back before Eric came for OT in an hour. So that was the end of my long, solitary afternoon.



I got back and there was a flood of people to see Parker. Eric came with the intention of working on things like pulling his socks on with a special tool, walking to the sink and mirror to brush his teeth and maybe even shave. But that didn't happen. Instead we spent a traumatizing hour (after getting the Relistor shot) with severe cramping, explosions coming out of both ends, AND the catheter pinching his bladder so badly he had to stand up while the first two events were taking place. I felt so badly for him, it just felt like the god of intestines could have been a little nicer to him. Parker says he doesn't even want that shot again.



Laurie, the Case Manager, called three different rehab facilities and asked them to come read Parker's chart and decide whether or not they feel they can handle his case (because of the wound-vac and all the other complications). She said if they can't he will go to a long term acute care facility that has more hospital like equipment. They should be by today.



Phyllis, Dr. Eckert's assistant, came and made some changes to the pain management plan. She tried to explain it all to Parker but he was in the midst of his "issues." The changes they made worked, and he slept really well overnight.



Last night Parker started on a new diet, post-gastro-something, which translates to six small meals a day. Definitely the way to go. His first "real" meal was beef stew and salad, which he ate to fast and almost tossed. Good lesson for him. He is very excited about the opportunities ahead, the life changes he has the chance to make, the possibilities life has to offer him now. Diet is a big one. He wants to get back in the shape he was in when he was playing football and training for power lifting. Great goal!



Dr. Garcia just came and whisked the NG tube out so fast Parker didn't even know what he was doing until it was done. Yea!!! No more tubes out the nose! A few days ago we were watching Animal Planet and there was a segment on elephants. Parker said, I just don't get elephants, like what's their purpose, and why are they so ugly with those long noses sticking out of their faces? After we thought about it, and looked at a photo of him, we both cracked up laughing.



Today Parker says he feels mentally great. Ready to take on the world. Ready for what the day will bring. Our nurse today is Jeff. Mickey is our CA. Photos below.



We don't know much about Jeff other than he is exceptionally nice, is often the Charge Nurse, has an infectious laugh, a wife who works in Labor and Delivery and has a two year old son.



Like Amy, Mickey makes us smile. He is funny without trying to be funny, loves food like no ones business, has a background in PR and would make a really, really good nurse.

A Very Special Event

Last night I went for a walk across the street to pick these flowers for Parker. For the first time since last September, when Parker came to visit in Maryland, we were able to sit down at a "table" and have dinner together. Okay, so he was sitting on the edge of his bed, and the table is actually the nurses portable tray on wheels, and I didn't have any real dinner so I borrowed some Cheerios from the IMC kitchen.... but it was still an event.

Parker and I had dinner together!

His ability to sit up long enough to have a meal has been a long time coming, and he has worked so hard to accomplish that goal. Yesterday he had all three meals sitting at the edge of the bed. He is getting strong and coordinated enough now to get himself up (after I detach him from all apparatus), and to manage forks, spoons, napkins, tearing open sugar packets and stirring his iced tea all by himself. Imagine the freedom he must feel. :-)

Next time you brush your teeth, or put your socks on by yourself, or stir some cream into your coffee, think of Parker and how hard he has worked to be able to do these things independently again. This is huge.

I remember reading about the history of gatherings once years ago. Whatever it was I was reading discussed the evolution of how eating a meal transitioned from satisfying hunger, to protecting our young, all the way to the social event it is today. I thought of that while Parker and I sat across from each other at our make shift table, he sipping spoonfuls of cream of chicken soup, and me munching on my Cheerios. Cereal never tasted so good.

After dinner, Parker sat up (a total of 2 1/2 hours yesterday!) long enough to teach me, and let me beat him at, dominoes. It felt so normal, and reminded me of the nights he, James and I would sit around the dining room table playing Monopoly. Playing games together was a big part of our lives when we all lived in the same state, and we missed James a lot last night. Hopefully he'll be coming for a visit soon and we will all sit together at a table, sharing a meal, and playing games.

James tried to teach me Texas Hold 'Em a number of times, and once when we were in WY on New Year's Eve, he had me sit with him while he played in a tournament with "real" poker players (the kind who were old enough to smoke and drink while playing .... I think James was 16 at the time), but I never got it.

Yesterday was a great day. Parker's pain is becoming much more manageable with the new drug on board and he asked for very little Dilaudid. He has been eating a full liquid diet of soups, jello, cream of wheat, Blue Bell (!!!), yogurt and juices, and so far (KNOCK ON WOOD!) he has not thrown up.

Today is the big test day. Traditionally it has been the third day the NG tube was capped off that he would start throwing up. It took that long for things to back up from the ileus lower in his small intestine. But the good news is, his stomach is not bloated (a sign of things backing up) and there has consistently been a very small amount of residuals when they suction the NG tube. So these are all positive signs.

Hopefully the test medicine is working on the ileus as we think it is. Once that is resolved there are only a few things left for us to move past for him to leave the hospital.

Leave the hospital. Go home. Maybe then I will be able to re-examine those days, those horrific days, and I will be able to have my melt down and move on. I know its coming, I just wish I could control when it happens.

Parker and I both have a lot to think about. People ask if we will be glad to return to a normal life again, but neither of us know how to define "normal" anymore. There is much to ponder about life these days, and even more to be grateful for.