Friday, August 22, 2014

Tympanoplasty

I haven't posted in over two weeks which is odd for me. Whether warranted or not, I feel that I'm in crisis mode due to swirls of personal, local, and international chaos. It has put me in mood to leave it all unwritten, but I'm pushing that mood aside when I should be sleeping.

We'll start with personal. Maybe it's the teacher in me, but the start of a new school year means renewal with fresh supplies, precise routines, and lofty goals of high achievement. Healthy lunches every day. Homework done and checked by eight. Papers in the not yet ripped folder pockets and no reason to visit the lost and found for at least a week. Ben having surgery instead of starting seventh grade has me thrown.

First Day of School


Ben's latest ear surgery has gone well and he's bouncing back very quickly, but I still wish we could have gotten this done a month ago. We'd hoped to get a cancellation but it never came, that is, until the morning he was scheduled and they asked if we could come an hour sooner.

Ready to go to the hospital, "Ever Bending, Never Breaking" and "Like a Boss."

The nurse that registered Ben looked up from the computer and queried, "Heart failure? Oh, you must be our miracle baby!" Twelve years later and his birth story lives on. Despite being nervous, Ben chose to go back to the OR fully lucid hoping for an easier wake up. He was not disappointed and aside from the cursing, thrashing, threatening adult in the bay beside him, Ben had a great recovery (Is it bad that I took that opportunity to tell him that guy must not have been as brave?)  I'd had a feeling of dread prior to this surgery, I think because there was a lot of unknown about how serious it might be. It's tough not to think too much about aggressive corrosive tumors near your child's brain. Ben received the sacrament of Anointing of the Sick the day before surgery and the experience blessed us both with a needed sense of peace. There's just something about this kid. God is in everyone, of course. But I can just find Him easier around Ben some days. Maybe Ben did see God on that Third of May, and that vision still resides within.

I saw this written on the hospital wall I've passed countless times. I never read it before. 

This is what happens when I write instead of sleep. Ahem. So the surgery that could have been super scary, was pretty light. There was not actually any more cholesteatoma deeper than what was seen by otoscope which was astonishing news. The surgeon was able to shore up some of the fixes he wasn't able to get to in the last surgery due to bleeding and cut away some adhesions and improved the ear drum which may help prevent further cholesteatoma growth. He also removed the prosthetic pieces that he suspected could be causing Ben's nausea. He said Ben should now be working with a 50 decibel hearing loss, but that he could one day have that surgically restored and hearing aids should make up the difference for now. Honestly, I don't care so much about the hearing. I just want him to feel good. The best news in all this is that Ben awoke the next morning in the PICU and said, "I'm not dizzy!" After at least eight months of misery, it appears Ben's vertigo is vertigone! He coined that phrase, by the way.

Whew!
Ben has a follow up scheduled tomorrow  today and he'll hopefully be cleared for school soon. As usual he's having some post event respiratory struggles, but breathing treatments are doing the job and giving me a reason to be up at crazy hours. I'm not joining words together well at this point, but some that can do a fair job standing alone are: Gratitude. Relief. Love. Peace. Amen.

I don't have the stamina for my other thoughts, so those words can wait.

Wednesday, August 6, 2014

Benlandia

At the risk of sounding dramatic, this summer has been fraught with trauma and stress. It started with a heart attack and will end with surgery and there wasn't much good between. The heart attack crisis has been mostly resolved. Grampa moved into a short term rehab facility to finish up his six week course of IV antibiotics. He's almost done and has been cleared to drive. It's great to see him feeling much better.

Shuffleboard 
I don't think I've mentioned the surgery before. Back in December Ben had a big surgery to his ear to remove a benign tumor called a cholesteatoma. It was benign in that it wasn't cancerous, but malicious in that it eroded much of the mechanics of his hearing. We were told there was a small chance the tumor could return and the only way to know would be through regular CAT scans. If you wish to learn more about this medical issue click here.

As it goes, six months later, the tumor has come back and will be removed the day before Ben was to start the seventh grade. Ben has been suffering from dizziness, nausea, and migraines since last November. First we surmised it was the pressure of the growth in his head, but it didn't go away with the removal, so we blamed the swelling. The day of his surgery he also developed a facial twitch that hasn't gone away, though it has faded. The new theory is that the prosthetic ear drum put in place in December has been pressing on nerves causing vertigo and the twitch. At least his migraines are managed. The ear drum's conduit will be removed this time in hopes of relieving the vertigo at the price of hearing in that ear. We're left now to hoping this surgery will improve his quality of life.

I can't express the helplessness I feel seeing him chronically miserable, especially since it has taken us so long to pin down a cause and I wasted some time thinking he just wanted to get out of going to school. He rarely complains aloud but his default position is in his bed reading his Kindle and it takes coaxing to get him to do the things he once enjoyed. Since birth, it has been fairly easy to distract Ben from sickness and pain. A sock on our hands in the ER, a book, a cartoon, or a joke had amazing anaesthetic power. Ben is now king at distracting himself. He escapes to complex story lines running through his mind in times of ache. So much of his summer has taken place in Benlandia. This distractibility makes it easy for us to think he's doing fine when he's not. I suppose that's a gift. I've noticed that friends now contain the antidote once found in my sock puppet. The transformation is astonishing when Ben has a pal over for awhile. Friends are the best medicine.

Ben's happy place

With all that's gone down this summer, I've been very grateful for the distraction of the 250 cake scavenger hunt. We're up to 235 as a group, and our family has seen 144 of those. It has forced us to find fun we wouldn't ordinarily have sought, taught us much about our home, and gave us the catalyst to check out a cave and a winery for Jason's birthday. I could spend more time at wineries.

St Ferdinand's Shrine in Florissant

Lincoln-Douglas Square, Alton

Aerie's Winery in Grafton







Mount Pleasant Winery in Augusta

The View


Bet I know his wish




Sunday, August 3, 2014

In His Hands

My uncle Donnie passed away suddenly and tragically while cutting hay last week. He was my mom's little brother, a loyal husband, father to four, grandfather to seven, a carpenter, and a farmer. Of course, all those titles don't begin to encompass all he was to those he loved. We did our best to tell his story and stand witness to his life here and after at his funeral this weekend. 

My grandmother and her five kids at my wedding in 2000. 

Donnie and his wife, Lesa.

Gathering at the church where Donnie was a lifelong member

Donnie's sons and grandchildren leading the processional to the burial site.

My mom at Donnie's farmhouse, the house she lived in most of her childhood.


Denise, Donnie, Doris, Dwayne, & David's stair step photo taken in the kitchen in the late 50s

6 of 14 Cousins: Gina, Carrie, Jenny, Sheryl, Jessica, Erin

Carrie and Erin with horse stable behind

Alex catching barn kittens in hopes of getting to keep one (like I used to), even though he's allergic



Gigi thought catching chickens might be safer and more profitable.
61 years wasn't enough time to accomplish all Donnie wished, but it was enough to build a beautiful life. His helpful and talented hands will be missed, his family will unceasingly ache for his presence, but we find comfort in knowing he is home.

Thursday, July 17, 2014

Little Things

Grampa is getting the boot from the hospital on Sunday. We're scrambling to make a new plan for him, because he isn't ready to be at our home. We're hoping to find a good fit with a skilled nursing rehab facility in the short term, and getting him back home to independence in Iowa in the long term.

Building Planes for OT

Ben started coming down with something last night, so I took him in to the pediatrician for a tune up this morning and was told he's coming down with something. It looks like it wants to be pneumonia, so hopefully we can trick it into moving on.

I told Ben to hook himself up for a vest/breathing treatment.
Ben: I don't want to.
Mom: And I don't want you to catch pneumonia.
Ben: I think we've learned by now that it's not so much me that catches pneumonia, as it catches me.
Sad, but true.

MDA's loan closet came through with a great new wheelchair for Ben. It's made of composite so it's much lighter than the solid metal we had before, and it breaks apart and folds up into more manageable bits. It fits him so much better and we're very grateful. They almost brought us a power chair by mistake and the opportunity caused me to think about the possibility for the first time. I'd ruled it out because we don't, as yet, have a way to transport a power chair and it seems like more than he needs since he is ambulatory, for the most part. Propelling his own standard wheelchair isn't really an option since his arms are just as weak as his legs.  A power chair would provide an opportunity for Ben to get around on his own locally, as in "walking" to school and friend's houses and would give him much more independence. Something to think about when my brain can spare the space.

Old Chair

New Chair. He's actually very happy with the chair, just not feeling well, here.


Gigi was walking along the arm of the couch so I told her to get down.
Gigi: But I'm doing my training!
Mom: What training?
Gigi: For my exercise!
Mom: You'll have to train on the floor.
Gigi: Please, Mommy! Please? I'll give you all my money in my whole piggy bank! Please? I'll never eat cookies ever again. For my whole life!
Mom: Sorry, chickadee. On the floor.
Gigi: You mean you aren't my mommy any more?

Wha?



I swallowed my fear and let Alex momentarily out of my sight by sending him to a modified version of Cub Scout Camp. He didn't spend the nights and he was there only short stints when one of us couldn't be nearby. He was still getting regular treatments from his allergic reaction and I wasn't convinced it wouldn't creep back once meds were stopped. Do other average 21st century Midwestern families expend this much mental energy trying to keep their kids out of hospitals?

Pick up time: With Epinephrine strapped to his chest


We were hanging out as a family telling jokes and one fell a little flat.
Mom: I think there was something missing from that one.
Ben: Yeah, humor.

Dad: What kind of fish is afraid of dogs?
Mom: Catfish!
Ben: What kind of fish is afraid of cats?
Mom: Dogfish?
Ben: All of them.




I was having a frustrating time at the hospital and had all three kids along with many hours of waiting. We whittled some of the time in the cafeteria. I very rarely allow chocolate milk, but it was that kind of a day and it just felt good to surprise them with the treat when they didn't even ask. The kids were reading aloud from the carton that said, "Describe a great day." Gigi lifted her carton and proclaimed, "This day, because Mommy said yes to chocolate!"



It's the little things. Joy is having little ones that can see and know just when to point them out.




Our sunny spot moved









Monday, July 14, 2014

Launch Photos

I just got my hands on some photos my brother-in-law, Hugh, took over the Fourth. He has an eye for detail and apparently knows how to use his camera. I love these moments he captured and just wanted to share, with his permission. Thanks, Hugh!




Purple Crayon has Lift Off!

Recovery Team




God Speed, Lego Man!
One might conclude from the bunting, the columns, the Mandvilla, and the Houstonian substation that my mother lives on a Southern Plantation. She doesn't, the back deck with walkout just kind of looks that way from this angle.