Wednesday, September 30, 2009

SOCCER GIRL

READY
SET
GO!!!
This is how I feel when I run home for the night.
READY, SET, GO!
As soon as I kiss Ben goodbye, I RUSH over to see Stevie play her FIRST soccer game of the season. When the game is over, I grab the girls and RUSH to the grocery store to pick up some food so that my family can eat. When the groceries are paid for, we RUSH home so that I can get dinner on the table before the older two have to RUSH out the door to mutual and scouts. While they are gone, I RUSH around catching up on cleaning and laundry that seems to have muliplied and replenished my house. As soon as the kids walk back in the door, I RUSH them to the shower so that they can get to bed at a decent hour. Then I finally get to lay MY head down. Funny thing is? My night seems to RUSH by and before I know it, the alarm clock is going off. I get the kids fed and their lunches made, take them to school and then RUSH back up to the hospital so see Ben. (whew!)
I cannot WAIT to be a parent in ONE location again.
(so...cute boy of mine, hurry and get better!!!)

PS: Stevie ROCKED the field!
(She plays a mean game of soccer.)
PPS: LOVE the mouthguard look...

Monday, September 28, 2009

TIME

It's wierd how time seems to STOP when you're stuck in the hospital. One minute life is normal, the next minute you find yourself in the ER with a very sick child. But really? Nothing stops. Life keeps going, people keep living and the world keeps spinning. I'm very well aware of that. For me? It's a tender mercy. It helps me to STOP and appreciate all of my many blessings that are ever present in my life. It reminds me to be grateful for the little things. It reminds me what is most important in this life. Most of all? It allows me to spend precious time with Ben that I would not otherwise have. Time that becomes shorter with every passing day. It's a sobering reality. And so with that time, I spend it loving every inch of him. I love to climb up on the bed, to lay beside Ben, and breathe him in. I love to study the little pieces and parts of his body so that someday when he is gone, they will be forever engrained into my memory. I love the sound that he makes when he breathes in and out...so rhythmically. I love the way that his body melts into mine when I lift him onto my lap. I love that he allows me to serve him in every way possible. I love the sweet reminder that IS his perfect and gentle spirit.

Sunday, September 27, 2009

SUNDAY BEST!

Dearest Becky, this is your daughter who combed her hair and brushed her teeth just for church. Oh yes, did I forget to say that I asked her to do both and she STILL forgot?
Love, Mr. Mom
Dear Husband of mine, wasn't that the SAME SHIRT that she had on 2 days ago when I last saw her? That makes day 3 with this unwashed shirt...and to think that she wore it to church? Please tell me she didn't breathe on anyone.
Your loving wife, Becky

Saturday, September 26, 2009

THINK/SAY

Have you ever said something before you REALLY thought about it first? I have. I try to avoid it at all costs. There have been times when I have suspected a woman to be pregnant, but I would NEVER ask her unless I knew for sure. I've gone to such trouble to verify with 5 or 6 people before approaching said woman because heaven forbid I should open my mouth just to find out she was 6 years post-partum. That would be embarrassing. It took me only ONCE to learn this lesson. I was 21 years old when I ran into a friend of mine that I knew had been pregnant. (just didn't realize how much time had passed since I last saw her...I'm sure If I did the math, I would have avoided the following disaster) I remember asking her how much longer she had in her pregnancy. "I delivered Hannah THREE MONTHS AGO!" she snarled at me. "Uh...I mean, you look totally good." I mumbled as I gracefully bowed out. I vowed never to make that mistake again. How about age? I just don't go there. That can be a touchy subject. If I am not confident on someone's name, I dance around it. It just makes life easier that way. As careful as I try to be, sometimes I am guilty by association. Last year a dear friend of mine was kind enough to force me to go the hospital when I was SO sick. She's a saint with the mouth of a trucker. I relented and let her take me. I think she has regretted it ever since. My friend was waiting in the hall outside my hospital room while the nurse was triaging me. The nurse asked, "Is that your mother?" (UGH!) From the hallway I hear..."ORTON! Tell that nurse I heard her and she's asking for a death wish!" I sheephisly reply, "Um...no...she's just a friend." One month later, this same friend was driving me back to the ER to be admitted AGAIN! And again she waited in the hallway as a new nurse was triaging me. And AGAIN this nurse asks..."Is that your mother?" "NOooooo!" (it feels like I'm yelling in slow motion) I try to get it out before she finishes her sentence...too late. (here it comes, I'm thinking to myself) "ORTON! Tell that nurse I'm gonna kill her...and that's the LAST time I bring you to the hospital...you can find your OWN ride next time!" (of course she doesn't really mean it...I hope.) TWICE this happened. To the same LADY! OY! It's AWKWARD! Happened again, just the other day. I was with another good friend of mine. We were at our children's sporting event together. Another mom, who apparently didn't recognize me, even though I have been to EVERY.SINGLE.EVENT since the beginning of the season leaned over to this friend of mine and asked, "Is this your daughter?" C'MON! Really? This friend handled it more gracefully than the previous said friend, but still...it makes for a really awkward moment. The clueless mom attempted to recover by telling us that it's because I look REALLY young...(just how young are we talking?) But no matter what is said, the damage is done, and that person still feels really old. Now if you'll excuse me, I'm off to play with my barbie dolls...

Thursday, September 24, 2009

BREATHING

My husband often tells me that I should go back to school and become a doctor. NO THANKS! I tell him. I have no desire to go back to school for the next decade just to wear a white coat. Nursing on the other hand? Now that is something that I could definitely see myself doing. Wait...that's what I AM doing. On a daily basis. And I LOVE it. I just don't get paid...monetarily that is. I find myself to be a perfectionist, it goes along with the whole nursing thing. Therefore I find myself becoming really frustrated when I visit the local ER and end up doing things myself because the staff is clueless when it comes to a child like Ben. It's not their fault, and I don't hold it against them. They just don't have a lot of experience with medically fragile children. Take the other night for example. We arrived on their doorstep around 10pm. The triage nurse leads us to a room. I lay him on the bed, watching his chest heave in and out while struggling to breathe.
This is where I hold my breath.
I look over at the nurse assigned to us who is leisurely messing around with some wires, trying to figure out which chest leads to use? I snap into action and snap her out of "la-la" land telling her "how 'bout we forget about those leads for a moment and get this child some OXYGEN? And while you're at it, a sat probe would be nice." She stares at me and then grabs a nasal cannula. REALLY? She then proceeds to place the cannula over his nose. This is where I get somewhat annoyed. HE HAS A TRACH! He doesn't breathe through his nose OR mouth. He breathes through the little hole in his neck. I grab the nasal cannula from his face, snip the end off (since there were no trach collars to be found) and attach it to his trach. The doctor finally comes in to see him. We have the same conversation every time.
Doc: what's going on with Ben?
Me: oh, ya know...respiratory distress.
Doc: huh. I see. I'll call Dartmouth.
Me: sounds great!
In the meantime, x-rays, bloodwork and nebulizers are ordered. I groan internally knowing that getting blood from Ben is like trying to squeeze water from a rock. 12 pokes later...he still won't give it up. (and I'm not sure I blame him) The respiratory therapist drops by to give him a nebulizer treatment. It causes Ben's secretions to really start flowing. He starts coughing up some serious green goodness. His airway is becoming obstructed because of it. Meanwhile the therapist is taking her sweet ole' time trying to "unclog" his suction cathetar. This is where I put my child down and take over. I yell for the nurse to "bring me more cathetars", he's not moving air at this point. I grab the tubing from the therapists hands and feel her tugging back. WHAT?!?! I grab harder and open a new cathetar to clear my child's airway. "Get me some saline bullets!" I bark. I squeeze one down his trach to help loosen things up. At this point a "local yokel" ambulance company walks in the door. The medic looks like he's 75 years old and smells like an ash tray. I try not to be judgemental, I can't help it. These are the yahoos that are supossed to transport my child??? They introduce themselves and before they can get another word out of their mouth, I ask them what their plan is if Ben crashes on them. (Now I've rendered them speechless.) I watch them as they watch my child struggle to breathe.
I'm still holding my breath.
They look back at me with wide eyes. "Do you have a vent in case he stops breathing and needs support?" Their answer is no. "Then you are NOT equipped to transport my son," I pipe back. (Wow! Did I just say that?) They agree and head BACK out the door they came in. Ben's getting worse by the minute. The doctor tries to reach DHART to see if they'll fly him. They can't. Darn FOG. Another ambulance company is called. This one has two medics and they don't smell like an ash tray. I inform them that they may have to bag Ben if he decides he's too tired to breathe anymore. Now I've made them nervous. Into the ambulance Ben goes. I kiss him goodbye and tell him to keep breathing. They go LIGHTS the whole way to Dartmouth. I follow. It's the LONGEST 70 minutes of my life. I'm not sure what was worse, not knowing how Ben was faring in the back of the ambulance or staring at the FLASHING LIGHTS the WHOLE way to DHMC. I kept praying I wouldn't have a seizure. It was 3:20am and we finally arrived at the hospital.
Finally...I can breathe.

Wednesday, September 23, 2009

PICU

If you would've told me that we would be HERE last night...
I would have told you
"YoUr'RE cRAzY!
Ben has pneumonia.
It literally came out of nowhere.
I was tucking him into bed around 8pm,
and by 9pm he was breathing like THIS:

video

I called my husband and told him I needed him home, NOW!
We were in the ER by 10pm.
5 (painful) hours later we arrived in the PICU.
After NUMEROUS attempts, his IV is finally in,
and now the PICU crew is trying to change his trach
to a cuffed one so that he doesn't leak on the vent.
His white blood cell count is really elevated
and his left lung is DOWN!
I won't know much more until later.
My bed is calling me...it's been a LONG night.

Tuesday, September 22, 2009

THYROID

Here are the percentages:
5% chance of being cancer
10% chance of being suspicious
90% chance of being benign
My results?
SUSPICIOUS
This means the cell growth looks abnormal on the slide. They can't for sure call it malignant or benign. Now that the cells look the way they are, my chances of it being cancerous just went from 5% to 20%. The combination of my thyroid being symptomatic and suspicious means I'll be having surgery. The Dr. recommends only taking the right side of my thyroid for now to hopefully prevent me from needing a lifetime of medication. There is a 20% chance that I will end up needing it after taking the right side. (won't know until about 4 weeks post-surgery)When I am in surgery, the surgeons will do a quick send out of my right lobe to see if they see any sign of cancer...if they do, they'll actually take out the rest of my thyroid which means definite medication. If it looks okay, they'll close me up and call it good. The official pathology report wouldn't come back for a few days and if it ends up showing cancer, that would mean more surgery to take the rest of my thyroid out. If I end up keeping my left side, I just need to get blood work every so often to make sure my thyroid is functioning. So there you have it, lots of end result possibilities.
DID YOU GET ALL THAT???
On a lighter note, during our Family Home Evening...we talked to the kids about my upcoming surgery and how as an outcome of that surgery I'll end up having a scar across my throat like Grampy. Kaleb pipes up and says,
"Woman! Your whole body is one big scar!"
(love that kid)

Sunday, September 20, 2009

RESULTS

Tuesday I see the Biopsy Doctor.
He happened to call late afternoon on Friday,
wanting to see me ASAP.
The biopsy was back...
and he needed an hour to chat.
I was on my way out of town,
and couldn't come in.
"We'll just see you on Tuesday then"
he tells me and hangs up the phone.
(gulp)
I've been around medicine long enough to know that it's never a good sign when your doctor wants to see you EARLY to discuss your biopsy results.

Saturday, September 19, 2009

NASCAR-ing-it!

THANKS MAKE-A-WISH!
This is how we spent our Saturday...
Off to the races...
With our VIP!
He's a VERY IMPORTANT PERSON!
He gets us into a LOT of events.
He's famous like that.
(who wouldn't be with THOSE cheeks!)
We had a blast being introduced to the NASCAR World.
The headphones were AWESOME!
So was the view.
Unlimited food and beverages...
With great seats!
(sportin' the tickets)
Everyone had a great time.
The favorites were the crashes...
and there were plenty of them.
Didn't really need these...
except to see the crash up close and personal.
On our way out...
Sad to be leaving...
Can't wait to do it again next year!
Thanks a bunch Make-A-Wish!

Thursday, September 17, 2009

GOOD GOLLY!

Remember the biopsy that I talked about yesterday? At the time it was VERY painful. I left the office wondering if the pain would continue to get better or linger longer. As the day went on I remember thinking that after a couple hours the pain was very minimal, almost non-existent. I was grateful. I also remember the doctor telling me that if I held pressure after each needle stick, there should be minimal bruising the next morning. There were no instructions or warnings when I left his office yesterday around noon. I was to carry on with my normal day and normal activities. That was comforting as I am one that does NOT like to be limited. I spent the remaining hours of my day attending my children's sporting events. We got home around 7pm, had dinner, read scriptures and tucked our kids into bed. 9pm rolls around, I happened to be watching a movie with Steve when all of a sudden I start getting this really painful soreness in my throat. As time passes it continues to get worse. About 30 minutes later, I couldn't even swallow and I felt some pressure on my trachea. I couldn't even stand sitting still I was in so much pain. I went upstairs to brush my teeth, thinking that I would go to bed early and hopefully sleep it off. I looked in the mirror and was shocked to see that I now had a swollen lump the size of a baseball. Steve called the ER to ask if this was normal after a biopsy...after all...they DID stick 5 needles into my neck. The ER paged my doctor and called us back. According to him, this was NOT normal (then again, neither am I) and that I needed to head to the ER right away. SERIOUSLY? Good golly! I spent the night in observation. My airway was their biggest concern. Thankfully they were able to give me some pain meds via IV as I wasn't even able to swallow my own spit. A CAT scan was done to see what kind of pressure the swelling was putting on my trachea. Thankfully it didn't get much bigger and thanks to the narcotics I was feeling a LOT better. Initially the ER doctor felt like I had some bleeding going on causing the swelling. The CAT scan showed no major bleed...in fact, they weren't really sure WHAT caused the swelling. HUH? They released me back to home this morning.
*****
Four words: I am an anomaly.

Wednesday, September 16, 2009

BIOPSY

Saw the Endocronologist today.
The results from my ultrasound showed
that it's an inch big, solid and egg shaped.
We went over all the different options
and probabilities of this lovely lump.
He did a quick exam of my neck,
confirmed that he could feel it,
and then he biopsied it.
THAT was fun.
5 different needles,
5 different sticks.
And not only sticks...
moving up and down type of sticks.
I'll find out in a week if it's cancer.
Regardless of the results...
I'll be having surgery to remove it.
It interferes with my swallowing,
and the choking feeling that I get
from the slightest touch is getting worse.
(and the fact that it continues to grow)
Tuesday is my next appointment...
stay tuned. :)

Tuesday, September 15, 2009

MAKE YOURSELF COMFORTABLE...

...with that hearing aid.
It's gonna be awhile.
I took Bubby up to Dartmouth today.
He saw the good Dr. Smith. (ENT)
The choices he gave us are these:
1. live with the hearing aid
2. more sugery
We chose to live with the hearing aid.
It even matches his uniform!
We really don't want to put Kaleb through another surgery.
He has a titanium piece that replaced his stapes.
The doctor figured that it has been jostled out of place.
That's what happens when you have an active child.
There is no guarantee that it wouldn't happen again.
The results from his first surgery
gave him 6 months of normal hearing.
That's not a lot of time for such an involved surgery.
Going through it again would mean time out from sports.
He's not willing to do it...I don't blame him.
So on he goes, with his new side kick in tow.
It's not so bad, atleast that's what he tells me!

Monday, September 14, 2009

KIDS...

This is Ben's new lift.
It came after my surgery.
I have yet to use it with him...
Mostly because he's been away.
It doesn't sit quietly though.
Hardly any of his stuff does.
Especially when it's SO fun.
Kids of all shapes and sizes enjoy it.
Even this BIG kid.
He makes me laugh.
Atleast I have peace of mind...
knowing that if I ever needed to,
I'd be able to lift Steve.
(let's hope that day never comes)


Saturday, September 12, 2009

JRA...(continued)

I took Kayla to her Rheumatologist the other day...
this was her follow-up from JANUARY!
(only 7 months late)
She confirmed that Kayla does indeed suffer from JRA.
When we saw her back in January,
she was hoping that her symptoms
were a result of a virus instead.
Because she still has the signs and symptoms,
her doctor ruled out a virus and told us definitely JRA.
Her left knee was still really swollen, painful and stiff.
The doctor told us that she has quite a bit of fluid in that joint.
She wants Kayla to continue her naproxen
and see her back in a month.
If the fluid is not gone, she'll give her cortisone shots.


Today was Kayla's second cross country meet.
She's a tough cookie.
During the middle of her run
she looked over at me,
mouthing that she was in SO much pain.
She came across the finish line in tears.
Back to the Rheumatologist we go...

Friday, September 11, 2009

CAMP JOSEPH

We spent Labor Day Weekend here.
It's our most FAVORITE place to camp.
This is the Birth Place of Joseph Smith.
The Monument is BEAUTIFUL!
Morning Feet and morning Faces.









The "who can hold a cap of listerine in their mouth the longest" game. Dave Bach won with 7 minutes 8 seconds. (who comes up with this stuff???)



These beautiful girls entertained us daily AND nightly!


Playing lots of fun "team" games.




Sitting by the campfire.



FUZZY BUNNY!
(if you haven't played...you MUST!!!)




Hiking to the top of Patriarch Hill





See you next year! :)