I think we can call it a success

Ty went back to school today for the first time since his hip surgery last year. And he did okay. I didn't have to go get him early - he made it.

He is still in a lot of pain, so I can't say the surgery was a success yet, but I'm still hopeful.

If he keeps going to school, I might get to leave the house during the day.

Hip Update

Before


After - it's still not ideal as there's a bit of bone-on-bone causing pain, but we're hoping the arrows align as his muscles heal and tighten up. You can see the plate in his right leg as well. He has more metal in him than an Ace Hardware store.

Sweet 16 - Sweet, but hard

Edited to add: I thought it fitting to use this for my Wordfull Wednesday post (more entries at Chocolate on my Cranium) because even though it's hard, it's also amazing to be Ty's mother.

Tyler's 16th birthday came and went last week without the usual accompanying 'Sweet 16' celebration. In fact, I hate admitting this, I didn't even wish him a Happy Birthday on his birthday. (I know! What is wrong with me?) Ever since I filled in the dates on the fridge calendar last month I have been thinking about it, so it's not that it hasn't been on my mind - it has. Oh, how it has.

I remember when we first started taking him to Early Intervention-speech, physical and occupational therapies-he was 6 months old. A case worker brought a video for us to watch entitled, Mourning the Loss of your Dream. She expected us to break down and sob, let it all out so we could "move on."

It's strange, but at that time we felt no real sense of loss for the life he might have had if he'd never had his shots at 2 months resulting in a life-altering brain injury. Instead, we had a strong feeling that he would lead us on a journey of much growth and love. And oh, how he has.

However, that sense of loss has snuck in like a stranger in the night a few times since then:

when the neighbor's baby started walking
and talking

when the kids in his class started being invited to birthday parties
and reading, writing and learning arithmetic

when the kids in his scout troop (the one he would've been in) started getting their Eagles
and, now, when they are driving, dating, and discovering their talents

I think about how it might have been - the friendships he'd have made, the girls he'd be crushing on (or who'd be crushing on him), the kind of big brother he'd be (definitely sweet), the miles of running and walking he'd have done by now, the sports he'd have loved to play, the food he'd be devouring during his teenage growth spurts, and yes, even the musical instruments he might have taken up.

On milestone birthdays, these thoughts and dreams raise their heads and give me pause. I am sad for him and also, selfishly, sad for me. Sad that the only conversations we have are the ones in my mind or with our eyes, sad that he cannot (right now) have the dreams in my heart for him or become independent and have these same dreams for his own future children.

I let myself mourn what might have been and then, carefully, I tuck those dreams back into their treasure box to store up against some far distant future where God will breathe Life into them. Then I come back to how it is, rejoicing today in the many lessons he's taught me, all the many ways in which he has stretched the corners of my soul - filling them up with love and gratitude for a life so precious.

He is my Sweet 16. Happy Birthday son!

We're home

I got a bit confused and

posted about the difficulites of only being one person here

and the craziness of transporting Ty home

at Positively Organic (my other blog). Sorry, I blame it on hospital brain/lack of sleep/lack of any kind of decent food.

Tachy is tacky

Ty was moved to the floor (off PICU) this afternoon after they removed his art line. All day he was tachy (high heart rate in the 170s and 180s, not good) and generally felt pretty crummy -moaning and holding his breath. His peripheral IV blew, but we figured it out before it infiltrated and gave him elephant arm.

Meanwhile, his fever got up to 103.2 around dinner time. Currently, it's come down to a reasonable 100 and his heart rate is in the 120s (much better). His blood pressure is a bit low - 92/48, but it's probably due to all the pain meds finally working.

Did you know that the effects of Valium last longer when it's given orally rather than via IV? Neither did I, but it seems to be doing the trick for him. He is relaxed enough to sleep and that does my heart good.

Textbook

You know things are going well when the residents/groupies do rounds and they only discuss the kid in the next bed before moving on.

Ty still has a low grade fever of 38.4/101.1 and is feeling the pain, but otherwise he is a textbook post surgery patient. This kid is resilient - I wish I could say the same for me. If only I would've brought something to do besides a Sudoku book, as he seems to need no more than for me to sit next to him and offer an occasional soothing word.

Well, I'm off to queue up for my *textbook* hospital shower as soon as I can figure out how to stand again (thank you hospital bed/cot).

Better than expected, which is always a bonus!

Mr O and I awoke at 4:30 am today, and with my Aunt M's help got Ty off to the hospital at 5:20. I still felt like maybe we'd just be turning around again to come home (due to some unforseen something or other), but we arrived to standing room only in surgery check-in.

Fortunately, Ty had the same anesthetist that helped out when he had his baclofen pump removed (due to the tumor, which we thought was a hematoma, but wasn't - you can read more here) for his surgery today. She remembered him, and was very careful about his tape allergies - he is practically covered in Mefix and Tegaderm (the only two he hasn't reacted to so far).

The surgery went quicker than expected. Hardware was removed from the last hip repair and a Schanz Osteotomy performed on his left hip. That is the third procedure for this hip, hopefully, it's the charm! He also had to have his right femur shortened because it was already 4-5 inches longer than the left - with the osteotomy it would've been about 7-8 inches longer and that is not good for fitting in a wheelchair or going through doorways.

Our surgeon truly is one of the best I've had experience with. If you live in my area or anywhere within driving distance, I highly recommend him. He always talks to Ty as if he is a regular kid, and that is something that warms my heart.

Ty did not require any blood transfusions, his crit going into the procedure was about 42 and only ended up coming down to the low 30s (which is awesome). He did require some ground bone tissue at the surgery site to help him heal, but they were able to use the portion of his own bone that had been removed from his right leg. Normally, cadaver bone powder would be used.

Instead of putting him in a spica cast, he has a full-length wedge strapped between his legs to help keep them from going back into the old position he prefers. I have no idea how we will get him home.

Right now he is resting peacefully in ICU, perhaps a little too peacefully as his oxygen levels have dropped a couple of times to 80. He is still hooked up to various lines and beeping machines, as well as spiking a small fever. Hopefully he will be moved to the regular floor tomorrow.

Thanks all for your kind thoughts and prayers, things have gone so well.

Big day tomorrow

It will start at the crack of dawn. We'll arrive at the hospital around 6am, and surgery will start at 7:30-ish. The repair to his hip and the shortening of his right leg should last about 4-5 hours.

In the back of my mind, I have been anxious about this operation. Instead of packing for both of us, I've turned to sorting through Ellie's clothes. I haven't planned menus for the week or bought groceries, or even exactly planned out who will be taking care of the kids. I know all those things will work out and be okay without me having to micromanage it all.

I recognize that I'm in surgery denial. Maybe, because it was cancelled the last time, I have a hard time thinking it will actually happen tomorrow. Ty may need a unit of packed RBCs tomorrow so we went in to have a type and cross-match drawn today. Maybe it is going to happen after all. Sigh...

7 Things

I was tagged by krisijo of Mamma Mia to tell you a few things, so here goes

1. I'm the oldest of 7 (6 living), and I'm pretty sure I'll never live it down. It seems I'm the meanest big sister in history. TOUGH as NAILS.

2. I had a fab garden this year

3. I've never broken a bone, but I have dislocated one

4. I'm a sucker for Aussie/Kiwi/British accents

5. I've got a weakness for chocolate, Dr. Pepper (diet now), and Bajio's Shrimp Salad

6. Must, must multi-task

7. I aspire to be clutter-free

Oh! and I have another blog, Positively Organic - go read my entry for Scribbit's Writeaway contest and tell me what you think.

Feel free to play along.

Traits you can learn from children

REPOST from October of last year

First the positives, then the creative spin on things:

1. Love - it seems all children have hearts big enough for the whole world. Any stray animal, anyone less fortunate than they are, every relative, and any baby - all can be loved in the same capacity. There is no place in them that can understand why anyone would ever let a holocaust happen.

2. Faith - When Spielberg left his bike out overnight and it was missing the next day, he just knew it had been stolen. We prayed. He looked everywhere he could think of. We drove around looking on all the side streets - all to no avail. We prayed more. The next day, I had a feeling I should drive down a side street before going on my errands, and then another feeling to turn around and go down a street I had passed earlier. There it was; his bike was laying next to the sidewalk in a bush. He just knew it would come back to him. Faith in those smaller things can be very encouraging for parents facing seemingly bigger challenges.

3. Forgiveness - the ability to forget their parents' or friends' wrongs against them, to embrace them, and accept apologies is an amazing gift (too bad it doesn't always extend to siblings).

4. Priorities - last year when Ty was really struggling because of the tumor, Spielberg commented to me that the tumor in Ty's body was like a war. I thought he meant that the good cells were fighting the bad cells, but he was really referring to the fight between our family (all of us, even Ty) and the tumor. He took it a step further and mentioned that it was like WWII when rationing was put in place. He explained that we were having to ration our time with the children because the tumor was requiring so much of our time and energy to fight it.

5. Ambition - are most kids this enterprising? Spielberg has run a lemonade stand/golf ball shop, a small vending machine, and an honor box (which is like a vending machine run on the honor system); Michelle has sold peaches from our tree, cucumbers and zucchini from the garden, toys she didn't want to play with any more, and lemonade; Nicole has tried to sell rocks, her inkblots and paintings, and crafts she's made. Michelle wanted a dog and she saved her pennies, spent hours thumbing through dog books and internet pages of shelter dogs, and she got one! Adria reminded me that after Michelle watched "The Secret," this was her dream. (see #2, above)

6. Imagination - Once, after recent dentist visits, I could hear the water running in the hall bathroom and the girls were giggling. I opened the door and there Michelle was, donned in latex gloves and one of those tie-on surgical masks, and wielding a toothbrush with Nicole sitting on a chair, and a towel draped around her neck. She was giving Nicole the "finer points of dental care" lecture and snapping digital xrays by sticking a baggie-covered popsicle stick into her mouth.

7. Helpfulness - (the double-edged sword) Nicole came running down the stairs screaming and crying, "I think I broke the computer!" She was hysterical and once she calmed down a bit, we discovered that she thought it would be a good idea to dust the inside of the computer tower - WITH A PIPE CLEANER.

"There were fireworks, and now my hand stings." We discovered black marks on her hand and when we turned off the power, we found the pipe cleaner had welded in 5 places to the frame of the computer - but it survived and Nicole was only shaken, not stirred.



8. Talents - Doing what you're good at, doing what you love. I routinely find Michelle in the midst of holding a preschool, gymnastics class, art group, or play group for the 3-4 year olds in our neighborhood. She is a natural teacher, a loving caregiver, and a miniature mom. She loves it, and so do they. Have I mentioned that she loves to administer tube feedings for Ty? I think she'd do IV flushes if I'd let her (don't worry, I won't - yet).

9. The Joy of Discovery - I remember when Ellie discovered her shadow. She was standing in front of the fridge, and the sun was streaming in through the window behind her. The lighting was just right to cast a life-size shadow right in front of her. She would point, then slowly walk toward her shadow. As she got closer, her shadow would move and seem to slip into that space between fridge and cabinet. She'd peek into that space, trying to see it, then back up and say, "Bye, bye," only to have her shadow reappear. She repeated this numerous times and then pointed to her shadow and said, "Geesie" (meaning herself). She was so excited about that little discovery.

10. Language Arts/How to Tell a Story - and by this I mean creativity with words. The ability to be tactful starts with a little white lie. This is also the origin of CYA in the adult world. Better have a good story, at least one better than the other guy.

11. Negotiation - every great lawyer has taken this trait and honed it to perfection, but it all started when they were a kid. Any boy who has ever convinced his mom to let him have a BB or Air Soft gun knows how this works (or any girl who has convinced her parents to let her have a dog). You ask for the sun, and you hope for the moon. You promise extra chores performed until graduation from college or eternal good behavior.

12. Persistence - (also known as the "Chinese Water Torture" or the "Can You Hear Me Now? How About Now? Now?") this trait is best developed in combination with Negotiation (see #11 above). If mom (or dad) says no, ask again. And again. And again. Ask it a little differently. Ask please with cherries on top, and whipped cream, and chocolate sprinkles, and please? Please?


13. Resilience - So what if you just ran headlong into the wall, turfed it off the swings, or skinned your knees? A kiss from mom and a band-aid are enough to get you up and running again. It's more fun to jump up, dust your self off, and play than it is to sit around and feel sorry about your owies (now that is a class I need to retake).