EVERYbodyness

Ty ran into a few complications this week so we went to his post-op appointment a week early, where we discovered that basically all the cruddy kidney stones are still there.

This means he will have to undergo Percutaneous Nephrolithotomy, and since he has so many stones he will need 2-3 of these surgeries. We also discovered that the stone in his left kidney is one that will have to be treated as well. It is rather a painful recovery since it basically feels like a Leprechaun has been dancing a jig inside your kidneys. Frequently, patients require blood transfusions which, in Ty's case, is no bueno since he's reacted to blood transfusions each time he's had one.

I am pretty good at breaking stuff and managed to jam up his tubing connection. And now I must become a Sherlock Holmes dude and go off in search of a leg-bag and accompanying accessories.

Ty's surgery is currently slated for April 18th, we are just waiting to hear back on some labs to know if he needs to antibiotic up in preparation. They will also tell us what his stones are made of. We are hopeful it is not a struvite type (but hey, Ty is a champ at winning the medical lottery)
***
Over the weekend, Ellie was being rather unladylike with her nasal secretions (boogs) and I asked her to get a tissue. Her response?

Ellie: Mom, EVERYbody picks their nose. Even so-and-so I've seen them.

Me: I don't.

Ellie: Mom, everybody also lies.

So tell me, is she right? Do you fall in the category of EVERYbody?

PS My face/ear/eye are still being stoopid.

PPS But I cannot complain since I don't have the equivalent of a jaw breaker stuck between my kidney and my bladder.

PPPS We have had some major exciting things happening - in a good way, too. Pictures next week.

Your-ology

Ty's urologist is an interesting doctor, but then I suppose you'd have to be if you specialize in pee-ology. By the way, "urine" is a word that ranks right up there with "membrane" and "moist" - blech.

He took a look at Ty's KUB (Kidney, Ureter, Bladder) X-ray and said, "That can't possibly be all stone, it's got to be mostly dye from when they placed his nephrostomy tube."

I suggested that he check out the CT scan that was done prior to that procedure. He did so, and if he were the swearing sort of interesting urologist he'd have said, "Holy Sh!t" because it most certainly was ALL stone. 

Here's a link to a kidney drawing with three stones in it. Ty's right kidney has every conceivable space filled with stones, and the largest one is 22 millimeters (ha-yuge). So, on Thursday he is having the least-invasive procedure performed in hopes that they can break up and flush some of the stones through the tube in his back. If the procedure is unsuccessful, he will require several surgeries going through his back and directly into his kidney in order to remove all of the stones.

Ty is one of the bravest, sweetest guys I know (takes after his dad), and he has been a trouper through all of this. We'd appreciate any prayers, fasting or good thoughts from you in his behalf. Please, let's let this procedure work on Thursday without damaging his kidney.

I may have given a false impression in my last post that I'm handling all of this (my stupid ear pain and poor Ty's unimaginable pain) well. Well, I'm not. 

I mean, I sort of am because what else can you do? But I'm also not because I say bad words, I lose my temper (which I'm sure is not at all related to the 3.5 hours of sleep/night I'm averaging), I'm a zombie some days, and occasionally I forget to shower. So I'm periodically cranky and I smell bad, but at least I remember to brush my teeth. So there's that.

I really want to thank all the neighbors that stepped up and fed my family while I was in hospital with Ty. Every other medical thing in his life (except the tumor) has been pre-scheduled. I was ready for them, and I pre-made meals and put them in the freezer, I had carpools lined up, etc. This time I was caught completely unawares. My aunt Moana made sure everything ran smoothly at home, friends brought me real food to eat at the hospital, Mr. O came and sat with Ty at night so I could go home and see the kids, and Wendy sat with Ty so I could run home and shower in my own bathroom (heaven, I tell you).

We really are blessed to have a great support network, and I just want you all to know how grateful we are.

Bleepin' Stones

We arrived at the ER, and the triage nurse took a blood pressure reading of 189/110. "That can't be right," was her only response.

Well, guess what. It WAS right. We took him back, they drew blood and took special xrays. The lab work came back normal for someone with a raging bladder infection. The main problem was that I know my son and this most definitely was farther reaching than a simple bladder infection. I could tell this by the mere fact that he'd been trying to throw up 4-5 times a day and he was constantly moaning.

I have never felt such condescension from a medical professional--and that's saying something considering the many I've dealt with over the years--in fact, he wouldn't even look at me and only addressed Mr. O. Mr. O kept deferring to me since I'm the one who tackles everything medically related for each of our kids. Any time I would ask "Dr. Grumpy Bedside Manner" a question, everyone in the room could sense his exasperation and practically feel his eyes rolling.

Finally, I asked him about the puffiness in Ty's abdomen (which just happened to be in the same location as his former tumor), and the doctor just shrugged me off, saying there was nothing on the labs to indicate a problem there. Maddening!

I suggested that just as a precaution, we should run a CT scan to rule out the possibility that his tumor was back. His response? "You do realize that one CT scan is the same amount of radiation as exposing your son to over 150 chest x-rays? I mean, do you really want to put him through that?"

Blink, blink.

I felt like being snappish right back and telling him that yes, I'd like to expose my son to as much radiation as possible. Anyway, the important thing is that he finally listened to me.

I knew something was up when they ran him through the CT three separate times, and I'll tell you what...Dr. "God" sure changed his bedside manner toward me after he saw the results.

It turned out that Ty has a 22 mm kidney stone completely blocking his right ureter. In case you have no idea, that's HUGE. He also has a 14 mm stone trapped in his kidney (as well as several others)  and a "smaller stone in his left kidney.
,
The ER doctor was actually nice to me afterwards. He would say things like "That's a good question," whenever I asked him something. Can you believe they had been going to send us home?

Instead they rushed him right back to Angio and placed a Nephrostomy tube into his kidney. The idea is that now the urine can come directly out of the kidney, through the tube, and into a drainage bag. Eventually the kidney swelling will go down and he can have surgery to remove the stones.

While he was in the hospital, he received two antibiotics via IV. And he never threw up once he got some relief. Since he's been home he's only run a low-grade fever once, thrown up about 4 times, and (on the upside) has developed a taste for chocolate milk and is enjoying his old standby - Dr. Pepper.

All told, we spent five days in the hospital and Urology completely dropped the ball on us. Good thing we have an appointment to see the Dr. on Monday.

It's called "Bleep Year" right?

So anyway, long time no hear. I'm sorry about that. Life has been quite eventful around here.

I finally felt like I had my life back--I was getting projects done (four pretty amazing quilts to be exact),  Lucky did the prairie points on this quilt for our friend Holly's baby. I love how happy and cheerful this quilt is!

Family chores had been reinstated, and each of the kids had one night a week to prepare a dinner of their choice--we had routine back, and it couldn't have been better. Except...that Tyler has been, well, not himself since about Thanksgiving. It started off as congestion, and that resulted in his major surgery being postponed.

Things just weren't right. Ty would go to school Monday and seem to have a great day, then a couple hours into his school day on Tuesday, he'd begin violently trembling. By Wednesday, he was having severe anxiety when we'd tell him it was time to get in his wheelchair to get on the bus. It was almost like a panic attack.

Something you should know about Ty is that he loves school. He loves the kids, the teachers, the classes, and it was so unlike him to protest and want to stay home. During this time, Ty's need for pain medication had drastically increased.We have a family friend who is a Physician's Assistant, and he made a house call.

Our friend discovered that Ty had a raging bladder infection. We tried one course of antibiotics, and he still had an infection. Ty's regular doctor decided to put him on a new antibiotic, and still his symptoms persisted. Finally, a cultures and sensitivities was run. Mysteriously enough, the antibiotics he'd been on should have done the trick. We tried a third antibiotic, and then Ty started throwing up. Like several times a day. And he started moaning.

Let me explain something. If Ty cries, we go to the Emergency Room, because that is just how tough he is. At this time he also started fevering. His normal body temperature is 96.9--nearly two degrees lower than the average person's. He was running the equivalent temp of 104.5, and it wasn't responding to Advil or Tylenol. I took him in for an office visit.

The doctor was perplexed, and thought that maybe his nausea was an allergic reaction to the new antibiotic. It was decided to give him Rocephin shots and to switch him back to one of the other antibiotics.

I realize this is long and boring, but bear with me.

Then Ty stopped having bowel movements. Imagine if you went three days without, well, "going". Imagine that this happens over a three-day weekend, and that you start vomiting 4-5 times a day. And that you start moaning and pain medicine seems to have no effect.

Emergency Room, here we come.

At this point, I was convinced that he had a bowel obstruction or intussusception.  I was wrong.

So I didn't ruin Christmas after all

Ty has a chest cold.

That means no surgery for him.

At least not yet

We'll likely not get a new date until April.

Which stinks because he will be in a lot of pain until then.

But, I guess this means that his Christmas won't be spent in a body cast...

So there's that.

Always look on the bright side of life.

It's all downhill from here

At least, that is what I'm telling myself. On Monday, I had the worst migraine I can imagine and it only crushed half of my head. I thought I was going to die because maybe I'd had an aneurysm, but I was too embarrassed to go to the hospital because what could they do? I'd used every weapon in my arsenal and the only thing left was a route I didn't want to take.

So that sucked. (I'm not even going to apologize for saying suck, because it sucked with a capital S-U-C-K). But it's all good because I woke up on Tuesday.

Some of these photos are months old by now, but I love this shot from my son's first high school date dance~

And this sunset~

And basically, all things red this time of year~

I wake up every day wondering if things will be better.
Sometimes they are. And sometimes they're not.

But really what counts, is that I'm surrounded by people on whom I can count.

People who love me even if they don't understand--even if I can't understand what the hell is going on. Why must it always "never rain, but it pours"?

Soon Ty will need to count on me, and I'm hoping I've got one more in me. He's having major surgery the week after Thanksgiving. Major, major surgery. As in sporting a body cast for 6-8 weeks after, major surgery. He will be okay, as he always is. He is a fighter and mostly he doesn't complain.

He is a fabulous example to me. I love that kid. I love all my kids. Lately, I don't think I'm good enough at letting them know. Pain is a thief. It robs you of normal you. You put so much energy into coexisting with it that it leaves you worn out, a shell of your former self.

To shell with that, I say. I've got cookie dough to make and eat with the kids. There is no way I have it in me to make Thanksgiving happen, but we can still make memories.

We can enjoy the ride.

And Now.... For Something Completely Different

This past week, on Wednesday, The Utah Schools for the Deaf and Blind - Deafblind Services Division came to our church's youth group and provided a unique opportunity for the 90 or so youth to experience a little of what it's like to deal with deafblindness. My son, Tyler, has to live with this disability every day. So, really, this simulation's purpose was to help them understand a little bit what it's like to be in Tyler's shoes.

We divided into three groups to make it more manageable. Then each group (of about 30 people) was counted off into two groups. One group of 15 teens donned earplugs, two eye masks, and heavy headphones for impairing their senses of vision and hearing.

In the hallway, the other group of fifteen were told how they should treat the impairees. The impaired youth were led around the building carefully and maneuvered around obstacles. Then they were given tasks to do and snacks to eat - all with respect.

Then, the tables were turned; the guides then put on their own set of sense-impairing earplugs/headphones and masks while the former impairees were instructed how to treat those who had taken their place. They led them around roughly, dragging them and then leaving them alone for a moment. Their faces were tickled by feathers, hand sanitizer put in their hands, and they were given a different set of tasks to complete as well as a different snack.

Afterwards, we discussed the experience and what it was like for them to experience this small degree of deaf-blindness. The youth were asked to come up with one word that described how they felt during the experience, these are a few of their answers:

ALONE
SCARED
MAD
FRUSTRATED
VULNERABLE

In some small way they were able to appreciate how hard it is to feel these things, and how important it is to respect those with disabilities. During this experience Tyler experienced his usual aversion to church and tried to throw up in order to get out of being there.

We discussed Tyler's likes and dislikes, gave a brief background of the challenges he's faced, and then discussed ways they could interact with him. If nothing else, our main goal was for them to have a greater compassion for those with disabilities and to see them as real people just like them.

Later, Mr. O ran into one of the youth's parents at our local store, and they related something their daughter had observed. She said, "When we see Ty again...when we've died...he will recognize us and know that we helped him and served him."

There are plans for the kids to come over and take turns hanging out with Ty while he is in his body cast (surgery is the Monday after Thanksgiving), and it warms my heart to see them "seeing" him differently. Tyler is not someone to be feared because he is differently-abled, rather he is someone to love and learn from.

He loves the same books, music, and junk food that they do. He is more like them than they ever realized.

I look forward to having these kids in our home, giving of their time and talents to help Ty through what is going to be a very difficult recovery. People are very, very good.

My thanks to those from USDB who gave of their time to help this simulation happen.

Birthday Monthiversaries

If you've looked at my 40 for 40 tab, you may have noticed number thirty-two: "Make Birthdays more special" - let me give you a little background. I did not grow up with big, fantastic birthday celebrations. We usually got to choose our favorite dinner meal, my mom would make it, and we'd get to take the day off from our chores. Although we each had a couple of big birthdays, it was tough to go all out in a family of 6 kids.

Usually we give our kids a budget that includes their birthday gift and allow them to plan their celebration. It's been interesting to see how they choose to spend their time and money, and I don't think there's anything wrong with letting them still have a hand in planning the festivities.

But in recent years, I've felt a disconnect from my kids. I'm not sure how it happened, but bit by bit I've felt that crack widen to a crevice to a small ravine and I want it to stop before it becomes a canyon or crevasse. Maybe I can trace the origins back to the separation during cancer treatments and surgeries for both Ty and I - all that time away from them, handing off the baton of childcare to Mr. O and extended family - but it doesn't really matter how it began, I'd like to mend it up and build some bridges across the gap.
One of the ideas I have, I know got its start from one of the blogs I read (please forgive me, I can't remember whose). Over the course of the year, we are spending time each month on or about the monthiversary date of each child's birthday with them - on a date with mom or dad or both.

Sometimes that date will be a quick run for ice cream, a dinner out, a trip to the bookstore or library, or sometimes it may just be going for a long walk with Copper. The idea is that it doesn't have to be some big event, but lots of opportunities for reconnections, for bridge building.

Last night was Ty's turn and since he's just had hip injections and is still feeling a bit sore to go out, I put the iPod on the speakers, turned it to Yanni (which I just discovered makes him laugh excitedly) and climbed up on his bed with him. Together we danced to the music, he grabbed my left arm with both hands and bounced it in time to the music, or just held my right hand.

Later, I pulled out a unicorn lollipop and gave him tastes of that alternated with sips of water (through a syringe). When we'd chilled sufficiently to Yanni, I switched over to our old standby Queen and broke out the Dr Pepper. He loved it and kept signing for more, I guess it's a genetic thing - this love for the Dr.

We snapped some photos and then Mr. O climbed up there and we broke out the fireworks app on the phone. You should've seen Ty go crazy with his fingers, drawing all over the place. We really should get him an iPad so he has a chance at seeing his handiwork but I'm afraid I'd have to chain it to his bed to keep the kids from losing it.

It was his night, and I think he had a great time. What do you do to stay connected with your kids?

Third Time Is The Charm

This is where I would normally write something funny about our trip to the hospital for a wheelchair adjustment where we ended up going back into the office three times before we got Ty's chair all sorted out. Only my brain is all a muddle so I can't turn it into funny.

***
Oh! There was that three sentence exchange with Ellie on the way up:

Ellie: Mom, I wish I were a horse.

Me: A horse?

Ellie: Well, a flying horse. Of course.

Me: A flying horse?

Ellie: Mom, don't you know what a Pegasus is? I wish I could fly in the clouds.
***

The third time I made it as far as loading Ty into the van and I was trying to get his seat belt on when I noticed that he was slowly sliding backwards. The chair could not stay upright - this is a bit of a hazard as you might guess - so we headed back in. Again.

A one hour appointment morphed into 5 hours and let's not forget the well over two hours in driving time due to a freak snow storm. It was an adventure and that's how we like things around here, but poor Ty's hip didn't care for it one bit.

Now, if you'll excuse me, my insides are crying uncle and I've got a hot date with a rice bag and a gel mattress.

How To: Experience books

This experience book gets my vote for most awesome Christmas gift! Ty's Communication Intervener, Mark, put this together for us to read with Ty. An experience book is an interactive story that relates something from the reader's experiences. In Ty's case it is also a tactile book.

Almost every page has a detachable item that he can feel to help him remember the original experience. Please to enjoy.

Fizzy Fish Fins!

Last week our family had a little talk about minding our Ps and Qs, {cough, not that anyone here suffers from sailor mouth or anything, cough}. Anywho, one of our solutions was to come up with creative nonsense phrases when we are upset, and I owe the above variation to Stephanie Hansen, famed creator of #Thursketti (Thanks, Stephanie!)

And now, why am I upset, why the need for clever language? As it turns out Ty's last injection did not work and the next option is for Femoral Head Resection. Go ahead and Google it, but basically it is the removal of the top of his femur and wrapping the end of the bone with muscle. And! There is only a 50/50 chance of it being successful, with the healing process taking up to one year or more.

So, Fizzy Fish Fins! We are going to try a little cocktail of pain management meds and hope it gets him through to the Spring (or, fingers crossed, Summer) when he can have surgery.

In other news, Ellie has a new talent. And it is useful for amusing ourselves (aka freaking people out) in waiting rooms.



In yet other news, I get to go to the doctor on Monday because apparently my body thinks it is 80 years old. Good thing I am strong on the outside, because apparently on the inside? I am all Fizzy Fish Fins, (stupid traitorous uterus). Yay! Surgery. It's just what I wanted for Christmas. Not.

Anyway, hopefully we come up with a plan on Monday.

In Memory of Freddie Mercury

For those of you who may not know, today is the 19th anniversary of the passing of the lead singer of Queen. Now, normally this is not something I would know, but it is a trending topic on The Twitter - so there you are.

Ty has thing for that band. Like a really big thing. A few years ago, Mr. O gave me a video camera for my birthday and I decided to capture Ty's excitement for "We Will Rock You" on film. It wasn't until later that I discovered he was saying "Rock You" (and let me remind you this is from a boy who doesn't talk) with the song. This was during the time he was going through chemo - thus, the lack of hair.

Go ahead and watch and I dare you not to have a soft place in your heart for Queen after this.



Also, Mindy Gledhill happened to watch the vlog on my last post and has graciously offered to come sing for Ty. How incredibly awesome is that? Very! I am all verklempt. There are such good people in the world. Here is a video of our favorite song from her latest album:

Stupid E. coli

That's what's ailing Ty. Only it's a UTI.

Lovely, that means somehow there is cross-contamination happening. Poo. Literally. Dammit.

Anyway, he was doing some funky heavy breathing this morning but nodded that Yes, he wanted to go to school. Only problem was, when we put him in the chair it was clear something was hurting him. His hip has recently started to cause him pain again so I'm not sure if it's that or something UTI related. But he did his version of yelling at me and his eyes were as big as dinner plates, so I knew it was bad. No school today. We'll try again tomorrow.

Since I was home, I got in two workouts. (This is me looking at the upside). I made dinner again, this makes 3 nights in a row. I don't know who I am anymore.

On vaccinations and the unexpected

Note: This post is about 18 months old, but still relevant. A little explanation: My oldest son, Tyler, experienced a serious, (albeit rare) brain injury at both 2 and 4 months of age from his pertussis vaccine. It has had life-long devastating consequences. His youngest sister contracted pertussis when she was just two years old and aside from coughing so hard that she threw up every night for 3 months she has not suffered any long-term effects. I realize that is not the case for everyone.

Having experienced both the consequences of vaccinating and delaying the vaccine schedule, I would choose the latter. It's a personal decision and I speak from the perspective of a mother who has watched her son suffer year after year from that initial decision to "follow the herd" and vaccinate.

I realize I am opening a whole can of worms here. Please understand that I am not anti-vaccine, but I do believe parents have a responsibility to read the damn vaccine information sheet. Actually read it before you agree to it and think about it, pray about it, know if it is right for your child, your family. Had I done all that, I may have still gone ahead and had my son receive his vaccine, but at least I would have been educated about the risks and may have recognized what was happening and sought treatment for him sooner.

And please don't lump everyone who chooses not to vaccinate into one big category of anti-government conspiracy theorists. Some of us are actually relatively normal people who have experienced the tragedy of being the "Ounce of Prevention" sacrificed for the "Pound of Cure." I hope the sacrifice was worth it.

And now for the actual post:

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!

**As a post-script to this: Do you realize that adults who were vaccinated as children can spread pertussis without even knowing it? Pertussis is especially dangerous if contracted by children under 1 year of age (keep those babies home, limit their exposure). It is recommended that adults receive a Tdap booster every 10 years. Are you part of the herd?