Home Again, Home Again

Although he isn't smiling in the photo, Parker came back from the surgery with a huge smile on his face. Not only because the surgery went well, but because he was taken to the 4th floor, IMC, instead of the 5th floor where a lot of post-surgery patients go.

He said he felt like he was going home.

The familiarity and friendliness of the IMC unit warmed my heart as well. But there is a sadness on the floor right now, due to the tragic death of one of the night time CA's, Audrey. She was a young girl who had reached out to Parker and I, and made friends with us while we were there before. She passed away suddenly a week ago today, and I know the loss is felt deeply by all her co-workers. I saw the flowers Parker and I sent to them, they were lovely and I hope expressed our sincere thoughts to all our friends on that floor.

Dr. Turner was very happy with the surgery. Parker has the wound vac back on, which will stay on probably for a few weeks. This is FINE with us, trying to keep the wound dressed without it was such a pain. The gauze and diaper looking pads underneath kept slipping to the bottom and I had to tape Parker up so much at one point I wrapped an Ace bandage around his middle just to keep the thing in place.

Parker has to stay in bed for several days with the exception of using the bathroom. We know we are at risk of another ileus, so he will move around as much as possible without disrupting the skin graft, and hopefully won't require huge amounts of Dilaudid to keep him comfortable. The thigh area where they took the donor flesh is where most of the pain is. The other risk is infection. God, please, no infection. Let this one thing be simple, let him start his life back up again soon. He is ready!

Parker asked me today to start scouting out places at nearby lakes (of which there are tons) to have his Water Party after the wound vac is off and the trach is out. The Water Party idea came from when he couldn't have anything by mouth and he was taking the medicine for the yeast infection that made him have serious cotton mouth. I promised him when this was over, we would have a water party where everyone had to bring something related to water. Ice water, watermelon, water balloons, slip n slides, anything at all water related. He still wants the party, and I will certainly honor that promise.

Today was a good day. A stressful day, with lots of anxiety prior to the surgery ~ like when we pulled up to the hospital and Parker gripped the door handle and told me he'd changed his mind, he didn't want to do this today after all ~ but in the end it was good. After a rough week, it is nice to end on a positive note. Next time he goes home there won't be as much stress. We'll know more about what we are doing, and won't have to fight the dressing, and hopefully the trach will be out. One less thing to worry about.

Something I keep forgetting to put on here. This lady I met in the ICU waiting room, Ty's future mother-in-law, calls the GPS voice the "Bitch in a Box"! Totally unrelated, but I was just reminded of it.

Good night my sweet boys. I miss you James.

Today is the skin graft surgery. 2:pm Austin time. Parker and I are both a little on edge, Parker more so than me. He'd never heard the anesthesiologist's speech they always have to give you prior to surgery. I have to admit, it is a little unnerving, but at least this time it wasn't delivered like a threat. :-/

Please keep Parker in your prayers today. I'll write more tonight and give an update.

Jitters

Skin graft surgery is tomorrow. Lots of pre-surgery jitters going on around here tonight. It's been a hectic week with so many doctor and wound care and PT appointments my head is spinning. Temperature hasn't been below 101 degrees for WEEKS and it is really getting to me. I need a mountain air fix badly!

Had long discussion with anesthesiologist today, which sent Parker full speed into a panic attack, which was only overcome after a trip up to the 4th floor to see his friends up there. Did him a world of good. He really loves those people up there.

Anesthesia doc had to give all the worst case scenarios again, but this time he was a gentle person and we were in a private room, not in the middle of the ICU waiting room. Even so, it brought back way too many bad memories of all the previous surgeries and complications. I'm probably going to hold my breath for the next 24 hours.

Please keep Parker in your prayers tonight and tomorrow. I will post more about this crazy week (to include the always-slipping wound dressing we had to have changed every day..... not a good idea, that one). Hopefully by this time tomorrow he will be safely tucked away in a bed NOT in ICU, resting peacefully with his new stomach skin.

Good night. R.I.P. Audrey.

Plastic Surgery

Jeepers, I thought when we got home there would be lots of time for naps!

More later, just wanted to say that Parker wants everything done and over with, so we are headed back to Seton for his skin graft surgery this Friday. I feel a little apprehensive, even though I know this is different, non-invasive, etc. But when I called Seton to pre-register and told the lady he still has a trach, she gave out the tiniest bit of a gasp and said, Oh, then he has to see the anesthesiologist first, so come on Thursday and they can make a plan.

Make a plan? Huh? Oh God.....

Also, he'll have to go back to ICU for "a day, maybe two or three depending on how he does after the surgery .... because he had all those complications before." Ugh. Double, triple, quadruple ugh.

How's that for literary writing???

While I Was Away

The last two days have wiped me out, to the point where I am electric with emotion.

As soon as James told me over the phone earlier this week, I'll be there, I felt a huge sense of relief. It meant I was going to have help getting Parker moved, getting him home from the hospital, getting myself moved out of the League House, getting Parker's variety of medications purchased and organized, getting the wheelchair, handling the shockingly disappointing insurance issues, scheduling the multitude of doctor appointments for next week ~ I would have help with all of it. He would be here to hold my hand through the entire process.

But James left this afternoon and I realized as we got closer to the airport, I am homesick. I am so ready for Parker to be well so I can pack up and leave myself.

It feels wrong, somehow, to say that. I am incredibly grateful my son is alive. There were so many agonizing days when I thought I'd be spending this summer in mourning. But I am so done with this whole thing. Sleeping on a foam covered table in his hospital room, out of habit listening to every breath he made ~ even in my sleep ~ running to the League House for an hour or two each day to shower and wash clothes, the only fresh air for my lungs inhaled while racing between the hospital and the parking garage. The constant worry, the total focus of my existence on a singular being, and the feeling ~ although inaccurate ~ that I alone was responsible for keeping my child alive.

These are the kinds of things that happen to you when you spend four months next to your child's hospital bed. You go a little nutso. Everything is out of context. People say things and you take them the wrong way, and can't understand later why you didn't get it. You talk only of the child who now lives, but almost left you. Everything is focused on that one thing, as if your life, too, depends on it.

And then it is over and you look around and think, Wow, the world kept right on rolling on without me while I was gone. I'm embarrassed to say, I don't even know what kind of President Obama is turning out to be, or what kind of dog his kids got. I know Michael Jackson died and Fedderer beat Andy Roddick in the finals at Wimbledon, but I don't know what the guy in North Korea has been up to, or which of my nieces and nephews birthdays I missed. I've been gone. For four months, my world has been about one thing, and one thing only. Keeping Parker alive.

We did it. He's alive and right now sitting on his couch playing some kind of video game. He has been emotional and cranky, but my friend tells me, Given everything he's been through, I'm surprised he's not a cranky, pouty, spoiled brat all the time. Tomorrow we go to the Wound Care Guru, Dr. Cervantes. Parker wants to see what she says about his going back and having the skin graft surgery the end of this week. He is so tired of everything and he, too, wants his life back. The trach bothers him a lot now and the lung docs won't take it out until the skin graft is done.

Also this week we have appointments with his internist (who has probably spent the weekend reading everything the hospital sent him about Parker's lengthy admission), the physical therapy group, his surgeon and I think he is also supposed to see the lung doctors, but I can't remember for sure. He has to go for wound care and PT every day. Ugh. It's still 105 degrees here.

But the good news is he wants to get everything done asap and get back to his old life as quickly as possible, too. I'm sure he will forgive me for wanting the same.

My friend asked me to compile a wish list of what we need. She meant for Parker, for his new apartment, his new healthy living lifestyle, since he had nothing before the hospital. But every time I think about her saying that, the overly exhausted, post traumatic stress part of my mind teases me and I think, Okay, what I need (and of course things are turning now and it can once again be all about me!), what I need is a week in Bay Head with my parents to sit on the beach and cry, followed by a week at TriangleX in WY to ride along the Snake River, in the shadow of the Tetons, and cry the rest of it out on horseback. Then I need to go home and begin my life again.

That's quite a wish list! :-) So I bought a lottery ticket today.