Our Face To The Sun

After a good start yesterday morning with more walking, and another trip outside (thank you Martin), we had a rough afternoon. But this morning we are turning our faces to the sun to begin fresh and new.

Parker sat up for breakfast. We have decided that every meal, since he now gets "real" food ~ meaning broth and cream of wheat ~ he is going to sit at the edge of the bed and eat. This gets him back up an additional three times a day (good for the trunk, as our wonderful PT people say).

Our OT Cruise Director, Eric, will be happy to know Parker is also opening the juice boxes himself, using both hands at the same time to arrange the things on his tray, and is determined to be able to put his own socks on by the time he comes back to work Monday morning.

The new pain meds are easing into his system, and if we could get this stupid cough to go away Parker would probably have a lot less pain to manage. Parker is also taking a somewhat experimental drug to make the ileus go away. Time will tell if it works the way we hope it will work, but it is interesting to be involved in this test.

Parker told Martin yesterday, he feels like he can see the finish line and is eager to make it work. I was pretty convinced that after a sleepless night last night, Parker would tell me he didn't want to sit up, or maybe even eat. But he told nurse Miranda first thing, I'm sitting up for all my meals now, no matter how I feel. If I feel good enough to eat, I feel good enough to sit up.

Here are a few photos from our day yesterday.

First meal in 3 weeks. Mmm... mmmmm ... good! Broth, broth and more broth! That was yesterday, before he decided to sit up for each meal.

Below are Parker and The Martin (we gave him this nickname because Lindsey, our other PT Wonder-Person said "Martin trumps me, so whatever his decision is, that's what we have to do.") Get it? Trump? ~ The Donald? ~ hence, The Martin? Ha! Ha!

Martin also has a devious "big brother" streak in him. He sets me up to get in trouble. AND he tells people I break the machines. :-)

Speaking of mean streaks, I have to mention I saw one of the lung doctors in the hall yesterday. The lung doctors are the Critical Care Specialists who were responsible for Parker's overall care when he was ... well, when he was critically ill. Anyway, I only saw this particular doctor once, and I thought if I never saw him again it would be too soon. He said to me, while standing next to Parker's bed, while I am crying my eyes out, You know everything about your son is just so complicated, I just don't know what we can do for him, I just think it's pretty hopeless....

He was making reference to Parker's size, which has made this illness more challenging. Even very simple things like the fact that he is 6'4" tall, and has gigantic feet, they had to scrounge around to find hospital socks to fit him. Anyway, you KNOW what a rage a mother goes into when someone criticizes their child, and mine was laying in a bed, 4' away, dying, and this bozo says that to me.

So I saw him in the hallway yesterday and I whisked off my isolation stuff as fast as I could to go catch him. I wasn't fast enough and he had disappeared before I could get out there. But I wanted him to see Parker, and I wanted to tell him, My son WILL walk out of this hospital no matter what you thought! And next time you think it's appropriate, or kind, or helpful, to say those things you did to the mother of a very sick young man... think again Buster!

Okay, I feel better now. Thank for listening.

Look At Him Go!!!

100' today folks, AND he got to push the button on the elevator! He wanted so badly to push the button himself, something normal. His shorts are too big and falling off so he had to walk while holding them up. Other than that he was pretty steady. PT Lindsey is on the left in red, and nurse Miranda is on the right. I bring up the rear, wheelchair and camera in hand.

The pain management plan is in effect! Started him on a new drug today which will allow us to wean him off the Dilaudid over the next few weeks. He is also on a drug that is supposed to help resolve the ileus by blocking the effects of opiates on the gut. His wound-vac was changed today and the wound looks a lot smaller. For the first time I could see the actual granulation of new flesh growing up from below the plastic mesh in his abdomen.

Every day has new challenges and new opportunities. We embrace everything with the knowledge that at one time I thought I'd be spending this month in mourning. The pain doctor said when she was reading through Parker's files (there are books and books of files), it was amazing to her to sit and talk to him and see him sitting up in a bed holding a conversation, having read where he came from and how close he was to losing his life so many times.

I am so grateful. Thank you God. Again and again.

Parker told Dr. Burg that today, for the first time, he felt he could see the finish line. It is exciting and scary at the same time. It reminded me of when Parker was born. I had read every book I could get my hands on about pregnancy, childbirth and raising an infant. It was an obsession. We were in the hospital five days (C-Section) and when we finally went home, I sat in the back seat, next to Parker's car seat, ready to throw my body in front of his if John had to put on the brakes too fast. I remember looking at his tiny ear and bursting into tears, telling John I wanted to go back to the hospital where they knew what they were doing. Even with all that reading, I felt I totally unprepared to be responsible for our baby by ourselves.

It feels a little like that, except this time I can't rock him to sleep on my shoulder.

This is a photo of Nurse Miranda. She has been our nurse several times and is very calm, nothing seems to rattle her. I imagine her serenity comes from her spiritual life. She is also exceptionally photogenic. She shared her wedding photos with me one day and they looked like something out of a bride's magazine. She is the nurse whose brother-in-law is the Center for Oklahoma State University football team, and is expected to be drafted in the 4th round next year. We are happy when we see her name listed as assigned to our room.

Funnies For Balance

Pain management team meeting is tomorrow morning. They re-arranged some of his drugs for the night in the hopes he will be knocked out and, at the very least, he will sleep until we can start whatever it is they've decided to do tomorrow.

It is really good to have a few funnies sprinkled into our day. The picture on the left is of one of our favorite CA's, Jessica. She knows how to make Parker smile and brings popsicles from the outside world and sneaks them in to him. We did have a laugh over the shape of those particular popsicles (um.... rocket shaped?). I never realized how important it is to laugh until people like Jessica reminded me. She always comes in to Parker's room with something to contribute to our need for laughter.

Amy gave us several moments of laughter today, too. First, she was having a rough day herself, so she popped her head in to say when she was done with what she was working on, she was going to come into Parker's room because she needed some vacation time. She said his room is like being on vacation because Parker makes her smile. That was a big hit.

Then, while she was here, some of the medication Parker just started on began working and he had to get on the commode pretty quickly. Amy helped me unhook him, take the air out of the bed, and get him situated. Parker was sitting there with some rather indelicate sounds coming from his belly and he commented it feels really weird doing that in front of a girl his own age.

Amy laughed and said, Yeah, it's kind of like the first date when you don't know whether to hug with your butt out or tucked in!

I don't think I have laughed that hard since the tube draining the gook out of Parker's abdomen got tangled all around his private area, AND stuck up his butt crack and poor Lisa, bless her heart, had to untangle it. There are just some things a mother shouldn't have to do......

Parker gave me permission to share those little scenes with you. He's a good sport.

Things That Make Us Happy

Parker walked 80' today without the walker!

He looked a little like a drunken sailor, but when our fabulous ~ though devious ~ PT person Martin asked him if he wanted to sit down he kept saying, No, no I want to keep going! Until he almost tipped over. Then he had to sit in the wheelchair.

As part of our outing we went to the hospital Book Sale. Not only was it a great destination for Parker today in the wheelchair, but once we got there he felt like a kid in a candy store. Me too. Anyone who knows me know my biggest weakness is books. Can't give them up. It just isn't in me. So today we splurged and used a little of the money two of my brothers generously sent me (from a side job they did recently) and bought four books. It made us both so happy.


* The Native American book has a section on his ancestor, Quanah Parker (where he got his name from).

*The Weird Texas book is a travel guide to Texas's local legends and best kept secrets. Each little vignette is short and the book is small and light so Parker can hold it himself to read it.

* The children's book you see I first bought when the boys were little, and I read it to them so many times throughout their lives. It is about a little boy who grows into a man and how the love between he and his mother grows and changes over the years. Quite appropriate right now. Parker said he could hear me singing the song from it in his head when we were at the book sale.

* The last book is one of the few Thomas Jefferson books I don't already own. I couldn't resist. It was half off the book store price and one I have wanted for years.

Thank you Jamie and Michael for that check. It paid my phone bill and bought Parker and I a lot of happiness in a short time. And Jamie, in your honor I bullet pointed the above. :-)


This morning when I got here, the mini sunflower pot Ashley sent had its first little tiny sprouts coming out of the soil! It made both of us smile. We watched Wall-E the other day and we are very interested in plants that survive against all odds.

Kind of like Parker.

The other thing that made Parker happy today is that he conquered something in one of the Nintendo games Kathleen sent him. I know nothing about Nintendo, but I know those games have done a lot to keep Parker's mind occupied on things other than pain. His Yes! was a joyful sound.

Thank you to everyone for all your treasures you have sent to make these days a little more bearable.

Bronchitis?

Doctor just came in to tell us Parker has a bronchial infection. That certainly explains the chronic cough and sore throat. Starting him on antibiotics today.

This is C.A. Appreciation Week. The C.A.'s are the people like Amy and Red who works as assistants to the nurses. They are like the glue that holds the rest of the health care team together. We've been so lucky to have really exceptional C.A.'s working with us: Amy, Red, Jessica, Ashleigh and so many more. I am going later today to buy a basket and fill it with all kinds of mini chocolates and will put it on the counter with a card of thanks for all they do for us. But I will also have to get cookies for Amy because I happen to know she has a thing for cookies, and she has been the ray of sunshine Parker has needed so many times.

Yesterday was incredibly busy. Before noon Parker had his wound-vac changed, a chest ex ray because he is still coughing up so much stuff and it turned yellowish green, a culture of that goop, and a respiratory therapy treatment which didn't seem to help.

We went back outside with Martin during PT after Parker walked about 35' WITHOUT the walker! That in itself was amazing. When we got back I had him sit up an extra 20 minutes so I could give him a very bad haircut.

Then he had all the regular doctors (internal medicine, surgeon and lungs), plus an hour long visit and consult with a pain management specialist. That was incredibly draining. The poor woman had been waiting in line most of the afternoon, waiting for all the other people to finish their tasks so she could talk to us and get Parker's entire history of pain, plus throwing up, plus anxiety. It was a highly thorough discussion, but there was a lot of talk about his weeks in ICU and the fact that he was so critical and almost died, so afterwards he was pretty drained.

Almost immediately Dr. Burg came in for a therapy session. Parker asked me to stay again because his throat is so sore from the tube and the coughing. This was another emotionally charged hour. Dr. Burg said there is concern that Parker's body is becoming physiologically dependant on the Dilaudid. This does not mean an addiction (he wanted to be very clear about that), it means he is requiring more and more pain medication to keep the same level of pain relief. His body is doing it to him. This upset Parker tremendously, he got weepy and a little defensive until Dr. Burg made it clear this is not like being a drug addict. It still upset Parker a lot.

There has always been a lot of talk in our household about addictions because of family history issues, so I think Parker is exceptionally sensitive to this The discussion with Dr. Burg ended up being very productive, but he reinforced what the pain management people want to do and Parker agreed.

We also spoke to Dr. Burg about my meltdown the previous day. I told him I didn't want to embarrass Parker by crying in front of all the people coming in and out of the room, and Parker reminded me what I always tell him, that this is their job and I cannot be embarrassed by it.

That's what you always tell me, Mom, when I'm embarrassed by things they have to do to me!

Parker's throat is very sore this morning and even though he had a Lydicain and nebulizer treatment, he is still coughing up a ton of nasty goop. Temp was up slightly this morning so I am going to ask Dr. Moore to request another white cell count, just so we know for sure.

The pain management nurse we spoke with yesterday, Phyllis, suggested we also get the GI doctor involved again to find out what the gagging and throwing up has been about (since he was 14 years old). Thank God! I have been asking doctors for years to look into this. There is still the thought it is anxiety related, which is fine, if we can fix it. Whatever we need to do.

Awkward Elbow Tree

I saw this tree today at Lady Bird Lake ~ which is really part of the Colorado River but is called a lake, and it reminded me of a pool party I went to last summer at Lisa's aunts house. That's where I learned the term "awkward elbow," from my old CHC friends/employees/students.

It meant so much to me that they continued to ask me to be part of their get togethers, even so many years after I left CHC. This is the first year I won't be there. I'm not even sure if they will be having any get togethers this summer because they are all spread out. Lisa is in Nashville hanging out with Carrie Underwood and Taylor Swift, Caeli is freaking MARRIED (how the heck did that happen???), Rachel I believe is staying in Charleston, Nanc is moving to PA with Mike, Laura stayed at Virginia Tech for her internship, I am still in Austin and the rest are scattered as well. As far as I know only Ashley stayed put.

So that was a long explanation as to why that tree got named Awkward Elbow Tree.

I had a bit of an emotional crunch today. Just one of those days. But I made it worse by trying to read part of the blog from those dark and desperate days, trying to put some thought into moving past it. But it was the wrong day to try and do it. I know I need to, I am stuck and can't move forward until I have examined it and processed it and put it to rest. But today was not the day for that.

Instead I left for a few hours this afternoon. First, I got lost in downtown Austin looking for a gas station. I was exceptionally surprised how clean it is for a city. Really lovely. For a city. Then I took advantage of the time and drove down to Lady Bird Lake (aka: the part of the Colorado River that runs along the southern edge of downtown Austin). As pretty as it was, with walking paths, footbridges, willow trees, and lovely water, it was pretty empty. I only ran across a few people during the time I was there.

When I got back in the car, I saw it was 101 degrees. No wonder no one was there. :-/

After the "lake," I drove out to Buda. It's sort of disappointing to see how it has grown, so different from the tiny town of 367 people from when John and I lived there. I had a nice surprise, though, when I drove out to the Satterwhite's property and found lisianthus growing wild in the very fields where I used to ride Lori Lye!

Parker had to have the NG tube hooked back up to the suction thing. He threw up twice today, total of a liter. So even if the ileus is resolving, there is still something else causing him to throw up. And this, mind you, is still without his being allowed to eat, and he had very little water all day today and yesterday. Don't know what's up, but we need to resolve this pretty soon.

Tomorrow we have a pain management specialist coming to evaluate Parker and see what we can do to get him off the narcotics and still manage his pain. Will know more tomorrow. He walked around the room today with Lindsey without the walker!

Lots of progress, just need to get that stupid ileus thing resolved. Pronto, please.

Sunshine, Birds, Grass, Smiles

Doesn't he look great? This was our PT outing today. We got Parker outside in front of the hospital, near the grass, under the trees, where he could hear the flocks of birds that are everywhere. The inner courtyard the other day was pretty awesome, but this... this was great. So good for Parker's soul. And mine.

He walked without the walker for a few steps for the first time, also. Then Lindsey, our dedicated PT person, spent a good chunk of the morning tracking down the right wheelchair so we could take him outside, and so off we went. The birds cooperated by putting on an appropriately perfect symphony. The sun was shining, the sky was blue, it was hot ~ just the way Parker likes it ~ and the shade from the trees added a beautiful finishing touch.


Here are more photo of some of our favorite people, those who have become so much more than "just" our health care team on this incredible journey. We feel their friendships are God's reward for fighting so hard to get well.

This is Lisa from New Hampshire. Lisa has lived here about a year and a half. She loves to garden, and one of the things she likes about Austin the most is the long growing season as compared to New England. She is an outdoors person, rides her bike to work every day, volunteers at a coop bookstore, raises chickens in her back yard, and she became my hero when she brought Parker his first piece of fruit he'd had in months. Lisa is one of our favorite nurses, and our most fun hospital days are when we have Lisa and Amy together. Then we laugh all day. I told Lisa today when we were discussing Parker's digestive system woes that it is an odd way to form a friendship, while talking about poop and throw up.



Lindsey is our fabulous, energetic, compassionate, tough-love-when-he-needs-it PT person. The same Lindsey who brought Parker a stack of movies when we had only been out of ICU for a few days in order to help him focus on something other than his pain. Lindsey is from Ohio, but is married to a former military guy so they moved around a lot. She has a HUGE smile which lights up our room. I really attribute so much of Parker's success in physical therapy to her ever encouraging optimism. When Parker gets out of the hospital we are going to get together for Monopoly. Seeing Lindsey is one of the highlights of our day.



Here are more random, outdoor photos of Parker from today:

Lady Bugs 'N Fairies

Say what you will, but I know it means something. I have this thing about Lady Bugs. Long story. But I know they mean good things are coming. Today I brought Parker's white Suburban over from the League House and parked it on the roof of the parking garage in the corner so when he walks today for PT he can look out the window and see it. Sort of like seeing an old friend for the first time in a long time.

I was just looking out the window and, low and behold, there was a lady bug crawling across my view. Good sign by itself, but when I went to snap the photo of it, I noticed, as you will, it was walking right above the view of Parker's car (see white shiny spot on roof in distance). Double good luck.

Below is a photo of one of our very favorite nurses and people, Nurse Nancy. She was the Fairy Dust nurse from pre-ICU days (see April 12th posting). Nancy is from California. She and her husband practice Native American spirituality and have a sweat lodge at their house. She, like me, believes in signs. Like lucky pennies. When Nancy is our night nurse, both Parker and I feel so relaxed, she just has this magical way of spreading serenity throughout the room. She is always filled with interesting ideas and has a sense of humor both Parker and I appreciate (and NEED!). This is Tall Nurse Nancy, not The Other Nurse Nancy. :-)