Fighting the Good Fight

Every evening.....

After Samantha has been cath'd, changed into her pj's, the oxygen turned on, the meds delivered, her tube site cleaned, formula prepared and the feeding pump primed and ready for the night....

.....her Daddy leans down, kisses her head and says "Good night Samantha, keep fighting the good fight."

This is part of our routine....just as important as oxygen, just as vital as seizure meds....keep fighting the good fight.

Sometimes (not often but sometimes!) he will forget and just kiss her head. "You have to tell her," I'll say. "She can't go to bed until you tell her." He will then give her double kiss and remind of her nightly task. Between you and me, I think he forgets on purpose just to kiss her cute little forehead again.

Yep....just as important as oxygen.

Filter Free

I'm not sure if it's my aging mind, lack of sleep, PTSD or a combination of the three but sometimes the filter between my head and mouth does not work quite so well.

This can be problematic.

Since we spend SO much time at Children's, I have been asked to sit on a couple boards; giving my opinion from a parents point of view. This is very helpful for all caregivers but I do have to remember to bite my tongue from time to time, scale down my anxiety, my angst, my frustration. I have to remember to use my filter.

I forgot my filter on Friday.

I was sitting at the table telling our latest story. The story of Samantha, the nurse and the 106 degree temperature. Out of my mouth popped "That nurse is just lucky to still be here."

Oops.

That was kind of harsh to a TCH board. I was told later that I never sound upset or vindictive when I talk about our hospital stays......until Friday.

I tried to explain that I didn't mean any harm in the statement. I was just upset and that sometimes when I get that upset I wish I could morph into a praying mantis and bite the heads off of those who seem problematic; those who are getting in the way of our care. (For those who are frightened and confused, please see Morph from July 09)

Well, wishing to bite someone's head off didn't sound very friendly either did it?

Where is my filter?????

Not sure if TCH will invite me back :)

This evening I was watching a Discovery episode on Grizzly Bears. The weather has turned fallish, I've stopped shaving my legs above the knees and am therefore feeling a bit bearish.

I listened with intent.

"Getting between a mother bear and her cubs is extremely dangerous and should be avoided at all costs."

Now there, that's my answer, why can't I have a warning like that?

"Getting between a Heather Bear and her Samantha is extremely dangerous. The Heather Bear may morph at anytime and bite your head off."

If I only had a caption, I wouldn't have to worry if I forgot my filter.....

"what happened to your head?"

"I had a run-in with a Heather Bear."

"Oh, ouch....well that's a Heather Bear for you....they will bite your head right off....dangerous animals....adorable but dangerous (hahaha)

The Discovery program ended with the Mama Grizzly being shot with a rifle-looking tranquilizer gun and relocated with her cubs deeper in the woods. Apparently, she had become a bit too threatening.

Ouch.

I'm looking for a stronger filter.

Ah-Choo!

So, Lil' Miss in her true form made the hospital staff run around for a couple days, recovered and was released last Friday. We still don't know what made her so sick. Virus? Perhaps.

Months ago we had booked a condo in Vail for the weekend so we packed up the oxygen, antibiotics, important phone numbers and spent a great weekend up in the mountains. It's amazing what a little fresh air can do.

Ya gotta keep on living.....

Samantha is on Tamiflu until the H1N1 vaccine is available. She is so much better....still tired after her big nasty sickness but she DID go to school this week and attended her therapies. What a trooper.

I gotta say, I'm pretty happy about the Tamiflu...if she wasn't on it, I think I would have her in a bubble, coated in Purel, wrapped in anti-septic wipes.

Stay Healthy :)

Bibbity, Bobbity, Poo

Poo is monitored very closely in our household....Samantha's anyway. When Samantha's poopin', life is good.

It's the simple things I hold onto.

So, Tuesday night when Samantha's belly looked big and distended, I started to get worried. When she was up all night with tummy pains, I became a little more concerned and when 'interventional measures' failed to produce the desired result, I called the doctor.

After several hours and a 103 spiking temp, I threw in the towel and loaded the family into the station wagon, Children's bound.

If you can avoid the emergency room at Children's right now, do...at all costs. It's a nasty, fluey crowded, angry place to be. I lathered Samantha with Purel, took a deep breath, hitched up my big girl pants and headed through the doors.

At triage, we discovered that Samantha's temp had jumped from 103 to a big, whooping 106. Not 100.6 one-o-six.

High.

"I've never seen a temp that high." The triage nurse said.

I was trying to keep from hyperventilating.

"Here's some Motrin. You can wait outside and we'll call her name."

"You're not taking her back now?????" I asked.

"We don't have a room."

"Will it just be a second?"

"Well, we're pretty full."

"But....you said you've never seen a temp that high. She has a mitochondrial disorder, she could crash at any time." What the fickin' hell???!!!

"I said that I've never seen a temp that high. I'm sure someone around here has."

I left the room in disbelief. Seriously? No wonder people ape-shit in Emergency Rooms. I fact I could feel a little ape-shittiness coming on.

Fortunately, I had my conveted Bat Phone. You know, the Bat Signal...when Gotham City is in trouble? Instead of big Bat Wings, ours is in the shape of a big 'E' for our fabulous pediatrician. I dialed her super, secret cell phone number.

"Dr. E? We're here. Samantha has a temp of 106."

"106? Oh shit." (This is the first curse word I've ever heard Dr. E say in our 3 year relationship).

"They have us in the waiting room," I felt my voice break.

"I'll make a call."

We were called into a room one minute later and Dr. E came down to consult with the ER Doc. Thank goodness for the 'E-Phone'.

Samantha's temp slowly came down and today she is resting fever-free. We are also managing the tummy issue with slow but consistent success. She has been tested for every virus and bacteria imaginable. We are hoping it is a bad case of the flu. What a hope, eh?

We have also decided that when Samantha gets sick, her tummy and its associated parts stop moving. We are now and forever more on high-risk poop patrol.

Samantha was admitted up to the 8th floor after her short stay in the ER. On my way up to the room, I ran into the triage nurse.

"Hey Mom, we get that fever under control?"

"She's at 104 right now."

"Fevers can be scary but they really don't do any harm," He said.

I resisted the urge to morph into my praying mantis state and tell him what a complete moron he is.

Out in the waiting room, the crowd had grown; sick, tired kids, parents with strained faces and wide worried eyes. When I walked through the doors they looked up at me and then away with disgust. I wasn't a nurse coming out to call their name. I wasn't a doctor; just another parent...getting in the way of who they needed to see.

I looked down and realized that in the midst of trying to control Samantha's fever and getting her tummy to start moving that I had landed a little poopy on my shoe. Kind like a little medal of honor....congrats, you survived the ER during flu season...have some poo

My husband convinced me I should probably clean it off.