Good Morning Austin!

So how is it we get both a sunset and a sunrise view? Which direction are we facing?

Yesterday was so exhausting. In the end, it was very good, but it felt like everything was turning on us. The Home Edition wound-vac kept beeping until finally the alarm went off and it said, "Device is non-functional - remove dressing from patient and call center immediately." Swell. That was comforting.

The wound care PT person up here is really nice, but I would guess she was a little over my nerves yesterday in the end. I'm not sure if it was the new location and care takers, or the fact that I knew I was going to the shrink in the afternoon to try and unload the burden I've been holding in my gut for 3 1/2 months, but as hard as I tried to be calm and rational, I felt jumpy and overly sensitive all day. So as the clock ticked the minutes away and we got closer to the "maximum 2 hour" mark after which the wound dressing MUST be removed (because it says so in the instructions and so in my overactive mind, if it stays on 2 hours and 1 minute my child might die....) I started pacing, looking for Sanjay (?), the PT Wound Care person. Bless her heart she didn't even look at me cross eyed when she came in, did a simple canister change and fixed everything.... with 2 minutes to spare. I almost burst into tears.

Our nurse yesterday was named Derrick. He was awesome, and guess what? He does trach care like he's done it everyday of his life! He even taught me and got me to look at the gross and disgusting hole in Parker's neck. So much for the RT girl telling us, Be careful, they don't do trach care up there, they code people for that.... Scared the crum out of us on our last day in IMC! Derrick got all our supplies together to get us through the weekend, and taught Parker how to get the extra sterile gloves on his huge hands without contaminating them. He was funny, calm, and patient. Just what the doctor ordered.

Sanjay, the PT Wound care person, suggested we consider not using the wound vac anymore, just using "regular" dressings because the wound is granulating enough to where it is level with the flesh and the wound vac isn't necessary. We asked for the plastic surgeon to come up, Dr. Turner. He came after I'd left and told Parker he could do the skin graft surgery anytime. Sanjay had suggested we look into using biologically engineered skin instead of his own to reduce the pain of the surgery, but Dr. Turner said it is always better to use your own flesh if you can. Barf..... where's the bucket????

The insurance company decided to only give us three days here, so the case manager has to call them asap and be sure they know we need to have more time for Parker to get more balanced and strong. Can you imagine me taking him home right now? Eeed-gads!

I went for my long awaited appointment to try and start working through some of this stuff I am holding on to, the terror and horror of being told I was losing my child, the dark days and nights in ICU when every breath Parker took was one more gift, the torturing thoughts of what my life would be like if I lost him, the look on James's face when he crumpled in the hallway after bravely seeing his brother ~ his idol ~ for the first time with his open abdomen and his body consumed by tubes and machines and braces and wires and beeps.....

The appointment was a little disappointing. I never felt like it was okay to let it all out. The shrink kept talking. I needed to talk. But that's what happens, you just never know till you get there. He referred me to someone else in his office who takes my insurance, and I might call him next week.

I am planning to spend at least today at the League House sleeping and watching tennis and trying to get the red swelling in my eyes to go away (allergies + crying for an hour at doctor's office). I'll come back for dinner with Parker later, but I didn't sleep well last night, was awake most of the night checking my phone to see if he called and answering emails. I got back here about 5:40am to watch Wimbledon with Parker because I thought Roddick was playing first. I think sleep is in order, even more importantly than Wimbledon. Hopefully they will have my tv fixed at the room soon.

Parker's spirits are good. He was tired yesterday and very anxious, not happy at all that I was going to League House to sleep, but after I explained how tired I was, and the concerns I have for my health after holding all this in for so long, he understood and felt better. He had a good night, was up a lot going to the bathroom but was able to manage it by himself without falling. I still worry about his falling after that night last week.

Today he will have three full hours of OT and PT. Amy told him on FB she would come see him today, and that made him very happy. He misses his friends from IMC. Hello IMC!!!!! But Parker has always made friends easily, so perhaps he will make more up here.

I made a friend. A one legged man who just had his third triple by-pass surgery. He is going home today. He was the only one up when I got here, sitting in his wheelchair in the dining/activity area watching the sunrise behind us cause the colors to change on the horizon. he seems a little melancholy and said he misses his leg. They just took it off a month ago. I meant to suggest he have a Memorial Service for his missing leg. I've heard that can help.

My eyes today ~ what's that all about?:

Shout Out

After one of the most stressful days I've experienced since the weeks in ICU, I discovered what a lucky person I am by the delivery of a fabulous dinner, courtesy of our family friend, Davis Tucker, owner of North By Northwest Restaurant and Brewery here in Austin. The Huntsman Burger was one of the best I've ever eaten, and the salad with walnuts and Granny Smith apples was perfect. I didn't realize how badly I needed some really good food until I ate this tonight.

Many thank to Davis for his generosity and kindness to me. If you are an Austinite, you have to go. The place is fabulous, a brewpub with a menu that ranges from lobster ravioli in a crab tomato cream, perfect steaks and blue cheese crusted scalloped potatoes, to this burger which is what I will forever hold up as an example of perfection.

Check it out at http://www.nxnwbrew.com/ Thanks again, Davis, perfect timing for this old, run down hag of a Mom.....

I am too tired to write of the ups and downs and roller coaster of emotions over today's events, but I want to give another quick shout out to Mickey, who "caught" several people for me at the IMC unit whose picture I needed. The picture with the half-faced person is not a mistake, she claims I promised not to use it because she thought she was having a bad hair day. So this serves as a gentle reminder: She needs to come to the 8th floor for her glamour shot. Room 827. :-)

Thanks, Mickey, for your help, and for your recommendation of the Huntsman's Burger. You were right.

More later or tomorrow morning on Parker's progress on his first full day in rehab. This old gal has got to get some sleep.

Endings

So here we are, on the 8th floor. The photo to the left is of our new view.

We both feel a sense of excitement and optimism, but are also a bundle of nerves. We worry about whether the people up here got all the updated information about Parker's meds (because really, as quickly as his meds change each day, who could keep up with them all other than a computer?). We worry about about whether they will have the right equipment for him tomorrow, whether the people will be as nice to us as our friends on IMC, whether they will be mad if we ask for new Yankauers, or think me crazy if I sleep in the chair in his room tonight ... and all kinds of stupid things like that.

But most of all, we feel a sense of melancholy because we miss the familiar rhythm, sounds and people of the IMC. But as Mother Abbott always said (re: The Sound of Music), When God closes a door, He always opens a window....

91 Days

As of this morning, Parker has been in this hospital for 91 days. He had already been at South Austin Hospital for 14 days before that, so this year he has spent one hundred and five days in a hospital.

He wanted me to put a picture of his wound up here, so that may be coming tomorrow, I just have to think about it first. Actually his wound looks so much better now, I was just comparing yesterdays photo to the one taken on May 16th. The difference is HUGE. If I am figuring it correctly, the wound was about 15" from top to bottom and about 10" from side to side in the beginning. It is now about 10" top to bottom and 7" side to side. The retention sutures are gone, but the scars from them will forever make a bulls eye on his stomach.

In a perfect world, one in which we get to pick the ebb and flow of our lives, we would hope the events going forward would be as follows: 10 - 14 days in rehab (all of this is assuming there are no glitches, no big set backs, nothing unusual that makes us back track), followed by 3 weeks home bound care where a nurse comes each day ~ but he is at home. Then he comes back for the skin graft surgery the first week of August, followed by a one week hospital stay to be sure the graft sets and doesn't get infected, home bound another three weeks, then return to work the 1st of September.

Like I said, in a perfect world this is how we would like it to go. Which would mean we all may get our "normal" lives back sometime early fall.

The other part is, none of us can define "normal" anymore.

Red Tape

Wow, talk about red tape. The insurance company wouldn't approve Parker to go to rehab until today, and in the meantime the rehab place had to give away his bed because they held it too long. Poor Lori, our Case Worker, spent two days on the phone with the uncooperative insurance people. But after a lot of screaming and yelling and stamping her east coast foot on the ground, she finally got it done. Yea!

So tomorrow we are off to the 8th floor, Central Texas Rehabilitation. Whew! Nurse Miranda will not be here, and we were happy before knowing she would be doing the transfer with us. But she's been here four 12 hour days and I'm pretty sure she is ready for a break. Sherrie very kindly offered to find out who was working and pick a "good" nurse for us. Jeff will be back tomorrow. Yea! We love Jeff. Even if he does need to eat more. :-)

Parker has had tremendous anxiety about the transition. Dr. Berg said every bit of anxiety he is feeling is valid, and he would think something was wrong if he didn't feel it. Parker has been through so much since March 10th. Assuming his rehab stay goes past July 10th, he will have spent four months in the hospital. 1/3rd an entire year. And what a year it's been!

Once we find out how long he will be in rehab, we can plan the skin graft surgery. In theory, if he got out July 10th or so, he could go home and rest for three weeks, come back for the skin graft surgery July 31st (or there abouts), stay in the hospital another week during which time he could gradually get the trach out, then have another 3 1/2 weeks to recuperate before he returned to work. Sigh..... if only life came in such simple packages!

The BCBS Case Worker today told me when we go home from rehab we will have a nurse come for a bit everyday to help us with the wound care, the trach care, everything. Thank goodness!!! The thought of managing it all by myself, even after a stint in rehab, was causing me some serious anxiety.

Dad had surgery yesterday, on his back. I spoke with him this morning and he was feeling pretty good. Thank you God for watching over him.

I miss you James.

Christmas

It feels a little bit like Christmas, a little bit like the first day of school, a little bit like moving day, and a LOT like when I brought Parker home from the hospital after he was born.

It's Monday! Parker's moving to Rehab!

Corporate Kindness

A lot has happened over the last few days. Parker is moving to the Rehab Center on the 8th floor tomorrow. Everything now is being done in preparation for that move. Catheter is out, NG tube is out, no more IV hook up, Parker is learning to dress himself including putting on and walking with real shoes, he is eating a post-gastro surgery diet of "real" food, all drugs are by mouth, and all the nurses are coming by to say good bye.

We were on such a high after we got confirmation that we were moving, and the only set back was the first night when he lost his balance and fell getting out of bed. It was incredibly scary when it happened because he still doesn't have strength in his legs to get up off the floor by himself. There was a lot of commotion, a lot of people coming to help, but in retrospect I would follow Lindsey's advice and not try to get him up until his anxiety had subsided.

The whole thing was made worse by a nurse who was apparently annoyed by the event and had the nerve to reprimand him, instead of asking if there was anything she could do to help him feel better. No mother ever wants their child to feel humiliated, and I was pretty upset about how that part was handled, largely because it was so different from the rest of our experience on the IMC Unit. But, we got over and moved on.

I went to meet with the HR people at his office on Friday. I needed to get information about getting COBRA insurance, and to find out about his being rehired after this is over. Since Dustin isn't there anymore we weren't sure exactly what was going to happen, and it has been a huge cause of stress for both Parker and I. Like a big, black hole in the future.

I can't begin to describe the feelings I experienced when I got there and was told they are keeping Parker employed until September 2nd! I think my jaw hit the floor, and I burst into tears. I am so amazed at how kind people have been and can be. Truly. You don't know what a huge relief is to us. HUGE!!!

Knowing he is still employed and has a job to go back to when this is over is such a relief. We really didn't know if anyone else would hire him after this experience. But to know his company is doing it because they WANT him there so much, because they have so much respect for him and his work ethic, that these are the reasons they are holding this spot for him ~ well, what an incredible tribute to my son! What an incredible tribute to the people at that company who are doing this for him! We are so blessed, and so grateful. They certainly know how to make a loyal employee.

More later, it is time for us to go up to the 8th floor and visit again. I am taking a bazillion photos of all the people who have been part of our lives here on the 4th floor IMC Unit this past 5 1/2 weeks. But the photo above is of Dr. Garcia, our surgeon. I wish he knew how grateful I am for his saving Parker's life. Thank you, thank you, thank you. More later.