Does Anyone Ever Want Bad News?

You know how people always try to deliver good news with the bad news so that it -- I dunno, softens the blow or something. Whenever someone says, I have good news and bad news, which do you want first? 

I always want to respond, 'give me the good news...keep the bad news, no way do I want it.'

Seriously, who EVER wants bad news?

And then there are people who just mix the bad news right in with the conversation and hope you don't pick up on it. (Mostly doctors.)

I'm generally a good news first kinda person. That's how I deliver information and how I like to receive it. (Take note, doctors!)

When it comes to Austin I think sometimes we are used to dealing with so many setbacks, that the inchstones get overlooked. {Also, sometimes we just have so much going on I forget to update you at all. My bad.}


So here we go:


Good news: Austin is doing pretty well on his new 'diet'. He is actually asking for food at least twice a day.
Bad news - He is not actually EATING any more than before. A lot of food is being pocketed.



Oreo cookie evidence


Good news: He is really drinking from his sippy cup like a champ.
Bad news: He liked juice a little too much, so we had to switched him to water.


Good news: He really hasn't complained.
Bad news: He doesn't drink as much water as he did juice. (So I guess technically, he is silently complaining.)



It's water with Crystal Light - the fake out "juice"


Good news: Occasionally, he is willing to drink the new formula (Boost Kid Essentials 1.5) straight from the box (similar to juice box).
Bad news: The new formula may actually be "too rich" for his system and we may need to switch back to the old formula.


Good news: Austin got fitted for new AFOs and they are ready to be picked up this week.
Bad news: Austin got fitted for new AFOs because his PT noticed his arch was underdeveloped and he still needs ankle support.
Very bad news: This means that ALL his shoes will no longer fit and now need to be re-purchased to fit over the new AFOs.


Good news: The new BAHA is here. (More on this in another post.)
Bad news: The new headband is not.


Well I think that's enough for today...oh yes, I have more.


Do you have any good/bad news to share?



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We Are Not A Zoo Exhibit, Move On!

A few months ago there was a Twitter storm about a mother breastfeeding in public in a certain LA store. An apparent unauthorized rep from the store went on Twitter and said it was not okay. Bad move.

This unleashed a firestorm of breastfeeding moms to bash the store. And then a flurry of posts on opposing sides, one even went as far as suggesting that children should be left at home because other people don't want to be uncomfortable while shopping.

I am not a mom who takes her toddler into stores often. As a matter of fact, I can count on one hand the number of times my 2yo has EVER entered a store with me.

It's not because I am afraid people might stare at him for throwing a tantrum or worse stare when I feed him in public. I know they will. Matter of fact, they usually stare the minute they see him. Who wouldn't...he's freakin' adorable! It is something we deal with regularly, children point and their mothers hush them.

I have to admit I am one of those moms with a walking, talking toddler who feeds in PUBLIC. I dare someone to tell me it's gross or wrong. Oh please do.

You wanna talk about uncomfortable?

Try TUBE FEEDING your toddler in public. Trust me if there is anyone who is more uncomfortable about it than me, please step forward.

What makes it uncomfortable is you standing around staring.





It would be more helpful if you at least offered to lend a hand. It's not always easy hooking up a long plastic tube to your child's belly {whoops, careful now - don't show too much skin}, attaching a 60cc syringe, then using your free hand to open a can of formula {which happens to be made by Nestle} and "feeding" your child because he can't/won't/doesn't chew and swallow food like your average toddler.

No biggie? Now try doing that at the mall, the zoo or Disneyland and see how it goes.

If it's so uncomfortable then, for me then why do I do it?

Because its really simple, the child needs his meals on a schedule that may happen to coincide with your trip to Disneyland, Target or the zoo. We do this 3 times a day. We actually prefer not to have an audience, but I can't control you.

And no, I don't want to walk all the way to the end of the theme park to feed him in the First Aid department or the bathroom or my car. Where do you do feed your toddler? Yep, that's right...in public.

Oh and the reason he doesn't go with me on short trips to the store is not because he is a royal brat, who might tantrum his way through Target. It's because it would also require a nurse and at least 2 medical machines, which take up alot of room and let's face it Target carts are just not big enough for all that on top of my shopping loot.

So yes, I see you; the lurkers, the whisperers, the gaspers...don't pity us, go do your shopping and enjoy your day. Let us be.


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Good Morning, You're Fired!

I feel that I MUST preface this by saying that I do appreciate the awesome job that our two current day shift nurses do. That said, boy oh boy has this past week been a doozy with Nursing issues.

Back in April, I wrote about how we had a nurse who went on vacation and I wasn't sure if I wanted her to come back. Well once her replacement overdosed Austin and then lied about it...I changed my mind about the vacationing nurse. She did return.

Over the past two months her performance has been lackluster and I actually caught her with her eyes closed...not a momentary head nod, but a real it-looks-like-I'm-sleeping eye closure. It turns out she has a bit of an issue with sleeping at night because she may or may not have been out at a local card club and then came to work at 6AM. So after that 'I may or may not be asleep' incident I asked the Agency to let her go.

It is never any easy decision to lose a nurse, especially one that works full time and has been here for several months, but I had had enough of the "last minute calling out, no-show, I'm too tired to work" routine. I just could not take my chances with her falling asleep on a day I wasn't home or EVER!





A good nurse is (apparently) hard to find. So imagine my surprise when the next call from the agency is 'we found someone to fill the extra hours.'

Well this someone showed up 3 hours late to her first training shift. She stuck around for 5 hours during which time she watched our current nurse do her job. She never once spoke to Austin or made any physical contact with him. Never. She never asked any questions about his care and really only seemed concerned that there was too much 'play time' and that his bed time was too late. (It's 8PM.)

Sometimes you just get a vibe from someone and know they are not going to be a good fit. She seemed too distant and just not the right caregiver for a spry 2 year old. Austin was doing his best to entertain her and she did not so much as crack a smile...really? Not one comment about how cute or smart or creative he was. Nothing. I just found that really ODD.

I didn't expect her be fawning all over him, but to not so much as smile when he does his cartoon character imitations or dances wildly around the room to music only he can hear...well that shit is funny. At that point I was thinking, I'm not sure she is human.

Kidding. Sort of.

Throughout the day I never got to really know her at all. After she left for the day I was just not really happy with how things had gone. I mulled it over and called the agency to ask her not to return for her second training shift. They said they would take care of it.

So why did she show up again the next day? Late, again. UGH.

The Agency was closed (of course) and the After Hours doorknob scheduler had no clue about what had transpired the previous day. She tried calling her cell phone, but it went straight to voice mail. So at 8:30 AM I had to go and break the news myself. Without so much as a brush through my hair or a cup of coffee - I had to fire her. AGAIN.

I was almost willing to let it go - you know take it as a sign that I had been hasty in my decision and give her a second shot.

That is until I walked in the room and found Austin playing with the other nurse and the trainee sitting in a chair, legs crossed with her text book in her lap and a highlighter in her hand. At which point I shot fire out of my nostrils asked her to pack her books and go study at home.

Like I need this.

I know I am not the only alone with Nursing issues. It just boggles my mind with all the stories we have heard from others and experienced ourselves. How do these people stay employed? And better yet, how can they possibly be in a profession where CARE and ATTENTION are required? (If not, absolutely essential.)


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Photo: Katya Mikhlin




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Naptime? What's That?

Lately we have been fighting a battle of wills when it comes to naptime. On most occasions we (the Nurses and I) win about 75% of the time...which isn't bad.

But I can predict that when Austin "wins" in avoiding a nap it means an reallllly early bedtime, like 5pm early. (Bedtime is usually between 8-9PM) Which means at 2AM he will be wide awake and looking for some company. Which means no one wins!



Austin fast asleep at 5:22PM. (Curses!)



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Do you have...

A favorite quote to share about overcoming adversity?
A saying that inspires you or others?
A special needs blog that needs some love & attention?

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What In The Heck Is She Talking About Now?

In order to demystify my world a little bit I am about to crack the code let you in on some FAQ. I realize Special Needs (SN) parents speak and write in our own lingo.

Here are some terms I use regularly in my articles that you may not be familiar with (in no particular order, except for the ones that are obviously in alphabetical order.)

PEOPLE:

The Breakfast Club: A name I gave to our Intensive Feeding Therapy Team. You can read all about them here and here and here. It is quite the ongoing saga.

And as long as we are mentioning sagas...let's talk about the {former} Nurses, shall we. I know you may have a hard time keeping them all straight.

The Pointy Nurse

The Smoking Nurse

The Choking Nurse

The Overdose Nurse

The Nurse I Stalked

(You're welcome.)





OT: Occupational Therapy. Trained personnel who focus on teaching every day activities through play. We focus on Eating & Drinking.

PT: Physical Therapy. Trained personnel who focuses on developing Gross Motor Skills and muscle function.

Pulmo: A doctor specializing lung function. Also know as the Head Honcho who runs this show.

GI: A doctor specializing in stomach, gut, intestinal function.

DHH: Deaf & Hard of Hearing; a teacher/program provided by a school district to teach ASL and deaf culture to children & their parents.


PLACES:

Who am I kidding the only place we regularly go to is the hospital. Boring.

Although there was that time we went to Disneyland

Lest we forget what happened at the Petting Zoo

We had the most fantastic experience at Build A Bear and The Beach.


THINGS:

AFO: Ankle Foot Orthotics - aka: Braces

ASL: American Sign Language

Aural Atresia: Medical term for missing inner ear canal

BAHA: Bone Attached Hearing Aid, pronounced like Baja but similarity with Cabo San Lucas ends there.

Branchio-Oto-Renal Syndrome: A genetically inherited disorder adversely affecting several systems of a developing fetus: Branchio = neck, Oto = ears and Renal = kidneys. aka BOR.

Broncho Pulmonary Dysplasia: Another fancy name for Chronic Lung Disease.

Extension: long tube used to deliver meds, formula or water to stomach via Mic-Key, nothing to do with phone or Kate Gosselin's hair.

Go-Bag: A bag that must be carried at all times containing emergency medical supplies in the event of Trach or Mic-Key removal.

Hemifacial Microsomia

MBSS: Modified Barium Swallow Study - a very expensive look at your anatomy (mouth/throat) function via X-ray vision. Requires you to eat radioactive food.

Mic-Key: Gastrostomy tube site, nothing at all to do with Mickey Mouse. aka: Mic-Key button.

Microtia: medical term for missing outer ear (pinna)

PulseOx: A machine that measures Oxygen via a probe attached to toe or finger. Also measures heart rate. Usually found in a group of other equipment.

Sleep Study: Usually an overnight study done in a hospital or lab during which different brain and breathing (respiratory) functions are measured using a ton of wires attached to the head, face, and chest. A therapist watches you via night vision. aka Sleep Deprivation Study to those of us who attempt to sleep.

Trach: Tracheostomy tube. May be referred to by maker ie: Shiley or Bivona.

URI: Upper Respiratory Infection

This list is not meant to be all encompassing and may be added to from time to time. It is also MY list for explaining things & people in our lives, so other SN parents may have different frequently used terms.

Do you have any things that need explaining too?


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Please Teach Your Children About Differences

Thankfully Austin is still young and doesn't understand what happened yet. But I DO! And frankly it is irritating me that more parents have not taught their children about how rude it is to gasp, stare and point at my 2 year old son.

Yes, I'm serious.

Today we went to a local Barnyard Farm Zoo. It was just Austin, the nurse and I. It was the first time we did not take the stroller with us, just the suction machine (which, thankfully we never even had to use.) Maybe that was the key, if he had been in his stroller as usual then he wouldn't have been running around and 'talking' about the animals...attracting so much unwanted attention.

Several children at the farm, aged approximately 4-11, were gob-smacked at Austin's appearance. They stood right in front of him, staring at his tracheostomy; then looking at each side of his head comparing small ear, no ear, small ear, no ear. This was right in front of their parents and NOT one parent said a word. Not one.

People, please talk to your children about differences.

While I wanted to enjoy our time there, I found myself getting increasingly irritated by the lack of respect these people had for my son. I know plenty people are going to say maybe the kids were just curious, 'children stare sometimes' or 'they don't know better'.

Here is an opportunity -- TEACH them better.

Parents, please sit them down in front of your computer, show them pictures of my son, if you must. Talk about how some kids breath different, eat different, walk or move different. Talk about how some kids are missing their hearing or their vision, talk about how they are still kids and how they still like going to Disneyland or the playground. Talk about how they have families that love them too. Talk about how God has blessed them. Talk!

Yes, I'll admit I was upset by the behavior of these kids today, but really I was more upset about the fact that their parents allowed this behavior. I can only hope that in the car on the way home, or over their picnic lunch they took the opportunity to "teach" their children out of earshot range. I really hope that is the case.

Maybe in that case, the next time they meet a child with a difference face-to-face they will react differently or not at all. Teach them to smile, to say Hello, to talk about the animals...just about anything else will do, but DON'T stare, gasp, point or back away. Imagine how that makes the other child (parent, person) feel.

I welcome curious kids with questions. I have no problem with that. Usually what happens is I intervene and tell Austin  "Say Hi to the little girl/boy" and then the kid realizes that I know they are being rude and they step back from him like he is contagious and then the parents realize it too, avert their eyes and drag them away by the arm. UGH. This is a teaching moment folks, let's embrace it.

When all is said and done I do realize that Awareness is the first step. I can understand that maybe some children (and adults) have never been around someone who is different. This summer is the perfect time to renew that library card and look for some books made for these teaching moments. Maybe, just maybe, we can raise a generation of more compassionate and accepting children.


http://www.disaboom.com/children-with-disabilities/best-books-for-special-needs-kids

http://www.ucando.org/books.html

http://www.teachervision.fen.com/learning-disabilities/reading/5316.html

http://www.monroe.lib.in.us/childrens/booklists/disabilitybib.html


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What Happened To Professionalism?

We recently had a nurse leave to go on vacation for a month. Before she left I was considering not bringing her back. Nothing specific that I could put my finger on, just a vibe.

Before she left, she and our lead nurse did train someone to cover her shifts. A lovely older lady came to train. I wasn't sure if she would be able to handle Austin. He might have a lot of medical issues, but he doesn't live like he knows it. He runs and jumps and marches his way through each and every day.

By all accounts, the trainee was not comfortable sitting on the floor to play or doing too much lifting or bending. As a matter of fact, I don't recall her carrying him at all during her shifts. Yesterday, was her first official shift alone with no other nurse shadowing her.

As per the usual, I did her job and had her assist me.  I do this for every nurse on their first solo day, I wanted to show her how I like things done and explain my reasoning for XY&Z.

As it turns out that particular morning Austin decided to wake up at the fine hour of 4:45AM. The nurse was not due to arrive until 6:00AM. With over an hour to kill I decided to start his meds and breathing treatments early thus allowing her more time to just hang out with him. By the time she arrived he was done with his early AM med schedule.

Then the TV blew up, but that's another post altogether.

All things considered, the day went well. At the end of her shift (2PM) she commented that he had worn her out. Which I found a little weird since I had done mostly everything for her. Oh well. I just chalked it up to her not having any grandkids and being a little out of practice with a toddler.

Shoot, most days he wears ME out too.



Today (Day 2) I woke up at 5:50 so I could be up and about for her entire solo shift, normally I might sleep in until 7:30 or so since I also happen to be the night nurse.

So I puttered around in my bathrobe and while I am getting my morning vitamin (coffee) she begins to administer his breathing treatments. After she is done she comes to ask me where to dispense a used needled syringe. I offered to toss it and she hands me a used syringe, an empty medication vial, an empty saline bullet and some discarded wrappers.


------insert record scratch-------


Wait a minute, an empty medicine vial?

Yup. She administered twice the prescribed dose. ARGH!

I told her that the vial should not be empty he was only supposed to have 1ml of said medication. She assured me that is what he got. The vial holds 2mls so how is it possible we are both correct. I showed her the chart with the doctors orders and the Rx.

So yeah, I'm correct she is not. We hashed it out. I asked her to leave a note for the 2nd Nurse so that she's not looking for the medication vial. Which is now in the trash. Empty.

Mistakes happen. Mistakes happen. Everyone makes mistakes... {lather, rinse, repeat}

The problem, aside from the obvious, is that she did nothing.

No notes in the chart. No communication with the next nurse. No call to the doctor. No call to the Head RN to report  a change in condition. N.O.T.H.I.N.G.

Yes, mistakes happen. Was it intentional? No. Did it harm him? Officially, No. (Since we were able to contact the doctor in time.)

But not reporting or charting or discussing this with anyone. That WAS intentional. If I had not offered to toss out the trash in her hand I would not have "accidentally" noticed the "mistake".

So I called the agency and fired her.

**More to come**


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Photo © Chad McDermott/PhotoXpress

What A Nightmare!

When I went to bed last night I had no worries about this entire Speech Therapy (ST) issue. (Read here for background info.)

Today I wake up to complete chaos. This not how I want to start my day. Ever.

At 8:30 AM I received a call back from the ST clinic. I called them twice yesterday so we could get Austin back on their schedule twice a week. I was informed that they would no longer be seeing him as an Early Intervention client due to "conflict of interest." Wha?!?

And furthermore, perhaps I should seek out another vendor for services blahblahblah. The policy of their clinic is yaddayaddayadda but if I chose to accept what the insurance is offering they would be glad to see him. Huh?

Confused? Yeah me too.

So I promptly called our EI coordinator for clarification. There must be some confusion with all this, surely they (ST clinic) are wrong. Now I consider myself a pretty savvy person, educated and whatnot, but these people are talking in circles. So now I'm wondering if I had it all wrong. Crap.



Our EI coordinator calls me back fuming. She says that she has already contacted new vendors for us and hopefully we can make a swift switch. She says the impression she gets is that his current ST wants to drop Austin from their caseload. And get this...here is the reason.

It's a long story, but the short version is that his current (well, now former) ST doesn't think "that there is anything wrong with him" "he looks fine" "he's not that sick" were a few comments she made to our EI coordinator.

So they don't "buy" the whole he's medically fragile "story", after all in the past two months he hasn't been THAT sick. Well unless you count that day we spent in the ER for BLOOD in his tummy. But, yeah he's not THAT sick.

Translation: They do not want to provide him services in the home. Period.

HELLO, that's the whole point lady.

You see this is how it works: medically fragile child receives ALL therapy in the home and has limited contact with others. That is how we keep him from getting sick in the middle of winter!! He, basically, only sees his cousins, immediate family, nurses and therapists here at home.

I even called his Pediatrician to get a letter stating the above, just to be on the safe side. But really no one is requiring that "high risk" language except this particular ST. The point is moot now as we are moving on. Just not how I wanted to start my day.

The real kicker is the ST clinic name is My Dream.  My Nightmare is more like it.

In other news, you can read the beginning of this lovely story over at 5MinutesForSpecialNeeds.com Starting today I will have a weekly article up every Thursday.

And if you are interested in how our Nintendo Wii Fit Plus experience is going, you can drop by WiiMommies.com for that update. (Last I checked there was a slight snafu with my article posted there but hopefully that will be corrected soon. I did not write it in duplicate.)


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Where's Mr.Goodwrench When You Need Him?

My car died on me yesterday while we were on route to the hospital. Don't worry it was a weekly routine appointment, not an actual emergency. Well, except for the car...that was an EMERGENCY situation.

As we exited the freeway the nurse noticed that she could see smoke from the engine. Niice! So as I glance at my dashboard sure enough "H", we are overheating. Had this been a medical emergency I would have been on my game. Tracheostomy pops out, I'm your gal. Smokey car, huh?

And of course I don't have AAA anymore, it's one of the "extra" things I had to cut from my single mom budget over a year ago. A year with no car emergencies is pretty darn good. Right?

So we're overheating and I have the nurse call my brother for some pointers. We are only a few miles from the hospital and our appointment. Just how much of an emergency is this? Apparently it's a pull over immediately situation, now I know. {I am sure there is a mobile phone app for this situation, but in the meantime my brother instructed me to stop, drop & roll.}

We waited in a gas station area for him to come and assess the situation. He determined I had lost coolant and asked me for a funnel. Yeah, the one thing I don't carry with me. So I gave him the only implement that I had...





Now aren't you jealous you don't carry medical supplies with you too?

Long story short, the radiator was shot so the car was eventually towed home. Today a mobile auto repair dude came and replaced both the radiator and the thermostat.

The moral of the story: If your goes kerplunkity-plunk in a less than desirable area of Downtown LA, make sure it is on you brother's day off, your mom is home to use her AAA for towing, you carry an extra 60cc syringe, and pull over next to a library with metal bars on the windows so the kidlet can run around inside. It keeps him away from the homeless guy and the panhandlers.


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Rocky Balboa 1, Austin 0

Austin was enjoying a fairly quick recovery from his surgery yesterday. Then, KABOOM!! woozy from the anesthesia he trips, falls down and gashes his eye. Nice work, Son! Anyone know a decent cut man?






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My Worst Nightmare: The Power's Out!

Editors Note: The power is NOT out right now. Please do not panic.

As if I need something else to worry about. Every time it rains, it pours and with that comes the eventual power outage.  A power outage in this house is a VERY BAD thing. Austin relies on technology to live. PERIOD.

In his case technology comes in the form of seven different pieces of medical equipment that keep him fed, breathing and...well, alive.  It's times like this that I really HATE the whole "medically fragile" part of our lives.  Don't get me wrong, day-to-day is no picnic, but we deal with it.  Believe it or not,  I really don't even notice the machines anymore. Crazy, huh?



They have become such a part of our lives that I don't worry about them. They hum while he sleeps and alarm when I need an alert. We are on good terms.

But it's times like this I realize how fragile and dependent he is on these machines.  It's times like this when I hear other mothers complain or question "Gee, how will I keep Joey occupied in the house for five days with all this rain?" that I really want to throttle them.  Meanwhile I am worrying about just keeping him alive if the power goes out, forget occupied.  In the event of a power outage he will be plenty occupied!

We are on the "list" at the power company. They know we have life sustaining medical equipment so in case the power does go out, we are on some priority list.  But in the meantime it is up to us to be as prepared as possible without a backup generator.  Every night the machines with battery back up are charged.  An O2 tank sits awaiting use if the situation requires. I'll bet you just make sure you have an umbrella when you go out the door huh? Ah, I remember those days.

• Plan A would be to sit tight on our battery supply for a few hours. I'd say 8 hours at most before I start to panic.  Out of 7 machines only 3 have battery back up.
  
• Plan B after 8-10 hours I will take Austin, his nurse, supplies and his machines to the nearest Fire Station and recharge there.
  
• Plan C if the situation is dire, it will require us to drive him to a hospital and admit him.

The longest we have ever been without power is 3 hours and that was in the middle of the day so there was no need to really hit the panic button.  I truly hope that Mother Nature cooperates and there is no need to implement any "Plan."

Did I mention I also need to remember my umbrella too?


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Extra! Extra!

Today's Headline: Austin's surgery will be postponed due to a cold.


Report: As much as I was dreading our 5:45 AM check in tomorrow morning I'm not happy about this new turn of events. I think extremely disappointed is a better description.


That is all for now. I am going to find a wall to bang my head on.


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God Only Knows

Over the past two years I have heard all kinds of questions. 

You know that old saying, "Everything you wanted to know but were afraid to ask." Well let's just say, some people aren't.


Does he eat through that (pointing to his trach)?


Why does he talk with his hands?


What happened to his cheek?


Why does he wear a headband if he's not a girl?


What did he say?


What's wrong with him?


There are however questions that only God can answer.


Why did this happen to him?


Will always need the tube?


When will they remove his Trach?





I'll leave those answers up to Him.


I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa


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Photo by nathangibbs on Flikr

Being A Patient Advocate - Mom Knows Best

Have you ever wondered what your child's medical chart says about YOU?

Does it drive you crazy when the doctor, nurses and therapists call you "Mom", instead of by your name? (or is that just me?)

I have quite a "reputation" among Austin's health care providers. Shocking! I know.

I am not sure how it all came about, if they each discovered this on their own or if there is a note in his medical chart somewhere, but I am known to be, and I quote, "on the ball". Over the past two years I have heard this said about me numerous times.

But that is a good thing, right? When you have a medically fragile child you need to be "on the ball", right? I am sure there are a LOT worse things than that. In fact, I know there are.

In some instances I am pretty sure "on the ball" = "difficult" to them. I prefer to think that I am well-informed, well-read and often just a teensy bit more knowledgeable on the subject at hand, which happens to be my child. They may know kidneys, blood pressure and how a muscle should work, but no one knows your child better than good ol' "Mom".

Looking back, my reputation may have started as early as Day 3 of Austin's life. I recall having an ever so...erm, polite exchange with a Pediatrician about an immunization. I declined it and she felt it was her job to tell me what a bad and uniformed parent I was. I knew my Patients Rights,and I exercised them. End of story. She is not the only health care professional I have fired, I just cut my teeth on her. Is that "on the ball" or difficult?

I remember when she left my hospital room, my mom was shocked 'Did you just argue with the doctor?' Yup! I sure did. If you try to brush me off, belittle my concerns, treat my child badly, provide negligent care or just plain ignore him. Guess what, then I can become difficult. Otherwise, yup you can call me "on the ball". Secretly, I kinda like it.

So what makes me so "on the ball" you ask? Just taking a guess here, but it may be one or more of several things:

• I call to follow-up on tests
• I ask for a copies of reports for my records
• I ask questions about possible alternative treatments
• I offer suggestions {gasp!}

Basically, I just look out for Austin's medical interests and I try not to get blinded by ego; mine or theirs. When it comes to Austin's medical treatment I intend to be seen and heard and whenever possible I like to participate in the discussion. I am his patient advocate

Obviously if I had all the medical answers I wouldn't need them. Trying to keep up to date on relevant studies or reviewing tests doesn't give me all the answers, not even close. I realize I need their expertise and experience to help guide the best course of treatment. I am constantly reminding myself, "No one can whistle a symphony. It takes a whole orchestra to play it." {H.E. Luccock}

Being your child's advocate does not mean being combative, not at all. Parents should be able to work cooperatively with a medical team. I would not suggest going into an appointment waiting to pounce on a doctor or disregard them, merely be prepared with your own questions. Unfortunately, it appears that some health care professionals are not used to a parent working that way.

I wonder how many other parents are considered difficult, erm...I mean, "on the ball". Have you clashed with a doctor on your child's care?



Thanks for peeking,

My Computer Has A Boo-Boo

Just a quick note to let you know, I have not fallen off the face of the Earth. My computer has a major boo-boo and is OUT OF ORDER! So until I can get it fully repaired I will be scare.




But on the bright side: ALL my laundry is folded and put away, Austin's toys are sanitized & organized, and I have caught up on this season's episodes of Cake Boss.



Thanks for peeking,

Hate To Interrupt You, But....

THE BABY IS CHOKING!!!!!!


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I really did not want to write about this because I don't want come off negative to those in the Nursing profession (Love you Cristin!). But good God, why do I keep getting LEMONS?? I don't want to make more lemonade. I just want to be able to work or sleep and know that my son is in capable hands. Is that too much to ask?




Apparently so.

Last Friday & Saturday we had a relatively new nurse, she has been here several times and every time I kept wanting to pull my hair out! But when you are desperate for some sleep you cave and you give the benefit of the doubt one too many times. Or I at least I do. Did.


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Let me start with Friday. We needed to leave for the hospital by 9AM. At 8:58AM I had everything in the car except for Austin. Yes, I packed it all...not the nurse. The only thing she needed to get to the car was Austin. BIG MISTAKE! She tells Austin "Hurry we need to leave," so he RUNS...do you see where this is going? He RUNS with wild abandon full speed, stumbles into the kitchen and face plants on the HARD.CERAMIC.TILE! Okay, this stuff happens. It has happened on my watch so I know he is 2 and he is going to fall sometimes. BUT at this point I am pissed because he is wailing and she is standing around dumbfounded. Grab some ice, grab the baby...do something!!

I momentarily considered calling and canceling the appointment because well his face was you know, throbbing and such. But we moved on. After I calmed him down I handed her a Nemo ice pack and told her to apply that to his forehead in the general area of the purpleness (yeah, that's my new word.) Two minutes later she whines, "he doesn't want it on." Too bad! He needs it on for the swelling to go down...didn't they teach this in nursing school?


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So now we are running late and I am flying down the HOV lane on the 10 freeway doing 70MPH. Which really is not THAT fast, but faster than the regular lanes. Suddenly I hear a cough/hack/sneeze from the back seat that sounded - excuse me - goobery. KWIM? Then silence.

This bothered me because that kind of noise coming from a kid with a Trach generally requires immediate action. Nothing. Then the noise comes again, more cough/hack/sneeze. So I look in the rear view mirror and still no action from the backseat where the nurse is calmly sitting right next to Austin.

So now I say, "um, I think he needs to be suctioned". Just then I look in the rear view mirror and see his face turning red, he is gasping & now she is fumbling with the suction machine. It's on but I don't hear any suctioning.

So now I am louder, "he is choking, he is choking..." She yells back, "the suction catheter came undone." By then he is gagging & retching. I am still driving in the HOV lane. So I look in the mirror and she he still fiddling with the machine and I say "unbuckle yourself and help him, he is CHOKING!!!!" Now I figure she is a complete moron, so I do the unthinkable.

I pull over into the area next the the carpool lane and STOP.THERE. put my flashers on I jump out of my seat and turn around grab the d@mn catheter and suction him myself. He is still retching. I yell for a 60cc syringe. OMG. She calmly opens it I grab it out of her hand and attach it to his G-tube. He stops gagging. I grab some tissues and hand them to her to clean off his face. Then she says, "well you know the car was moving and I'm not used to that I couldn't get the catheter in."

O.M.G.

So needless to say I wanted to throttle her and secretly wished a police car would drive by so he could take her away. Far, far away.


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Against my better judgment she came back on Saturday. I woke suddenly @ 6:20AM. I saw the monitor going so I knew Austin was still asleep but I did not hear the nebulizer machine humming so I knew he was not getting his breathing treatment. I walked out in to the living room and asked her "did Austin get his water & meds?" She looked at me like I was speaking Greek. So I stormed back to the room and prepared the meds and water. By the time she caught on I was already mid stream to MAD. I hand her the syringe and go to the bathroom to privately scream! I walk back in and the light is on...why is the light on? He is ASLEEP!! So I turn off the light and say "um, we have a schedule printed out because certain meds need to be given at a certain time because of drug interactions. They need to be ON TIME." So she innocently looks at me and says, 'so then you wanted me to wake him up?'

No, did I say wake him up? No, I said, there is way to do it without waking him up. Everyone else can manage that, but guess what you turned on the light, Brainiac so yeah now he is awake!

And so begins my day.


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'He doesn't want to take a nap, he wants to watch his DVD.' So I gave her my standard response, "Well I'm the Mom and I say it is nap time, so there." Yes, I really did say that. He is 2, of course he wants to watch Nemo, but guess what it is nap time and he really is tired he just doesn't know it yet. ARGH!

Now because of the whole early AM medication fiasco the schedule was 30 minutes behind. My direct instructions to her at nap time (11:00 AM) were, "hook up his feeding to him so you don't need to fumble in the dark later or turn on the light. Then at 11:30 you turn it on."

So why did I look at the clock at 12PM and think to myself...hey I don't recall her walking back in there. So I go ask. I find her mid bite into her sandwich. "Did you turn on his feeding at 11 or 11:30?", I ask.

SHOCK! It registers.

She is eating her lunch and looks up and says, 'Oh, I forgot.' You forgot...YOU FORGOT! You are hungry and eating YOUR lunch, but you forgot to feed the baby who can't eat. Seriously. You forgot? You stupid, stupid beast!

Now I am completely disgusted.


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Then she has the freakin' audacity to say to me, 'you know I need to leave exactly at 2pm today.' Oh don't worry sister you will be leaving at 2pm and not one moment sooner. Oh trust me I wanted to toss her out on her ***, but I had things I NEEDED to do, like um, shower and laundry. I gave her a list of "Austin" chores to keep her busy. So then at 1:20 she brings me her time sheet to sign. I handed it back and told her bring it back to me at 2PM to sign. You think by then she would have figured that I'd be a bit, um I dunno "testy" given her behavior. No, not so much.


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Austin woke up from his nap at 1:47PM. Perfect timing for a diaper change and some water. Do you know she actually refused to do it saying 'I need to leave at 2PM.' The clock read 1:53. So I said you have 7 more minutes that is enough time. 'No my watch says it's 2PM.' I don't care what your watch says, THAT clock says 1:53 so that is that.

Right on cue after his diaper change as he is laying on the changing table Austin begins to retch and vomit, I try to sit him up and she pushes him back down. WTF? "He needs to sit up so he can vomit, DO NOT lay him back down!" Isn't this written somewhere in Nursing 101?

So at 2:00PM on the dot she left. FOREVER!

Let me add that we do have some WONDERFUL nurses here, but every once in a while, a true LEMON! Please tell me I am not the only one with Nursing woes.


Thanks for peeking,

This Little Piggy...

This Little Piggy Went To Get His H1N1 Vaccine
This Little Piggy Stayed Home
This Little Piggy Had Tamilflu
This Little Piggy Had None
This Little Piggy's Mommy Cried Wee, Wee, Wee...All The Way Home


My 5 year old niece was on a sleep over at our house last night when she became ill. It is so weird to hope that someone has the flu, but if it has to be the flu, please just be the regular ol' seasonal flu. Please!.

We are awaiting results from her H1N1 test to come back NEGATIVE. The longest few hours of my life. And I can only imagine how my sister feels. If you have a moment, please say a quick prayer that Bella is Swine Flu Free!!

In the meantime, the Triage nurse at Austin's Pediatrician's office told me that there may not be ANY Tamiflu locally IF we needed it. So again, a quick prayer that no one in our family comes down with H1N1 so don't need to hunt down an anti-viral medication.

How are you doing this flu season? 

**UPDATE** Bella tested negative for H1N1. YAY!!!!

Photo credit: eclectech.co.uk

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The Teacher Who Deserved A "Time Out"!

Today was our Annual IFSP (Individualized Family Service Plan) with Regional Center and all of Austin's therapists to plan for the next year. I had a festive assortment of fall themed donuts & tea on hand for our 10:00 AM Meeting. Pretty huh?



I had the OT, PT, Infant Stim and DHH teacher here. Austin was so excited to see them all in one room at the same time. I was even planning to take a group picture. It would have been a perfect meeting...EXCEPT...{insert the scratching sound of a record being ripped off the turntable}, one person was a huge buttinski and ruined the whole thing.


Don't you just hate that?


As soon as the DHH teacher walked in I could tell something was wrong. She looked around confused and immediately asked why Austin was sitting with another therapist. I told her they were here for the IFSP Meeting. She was like, "What IFSP?"

I was so ticked!! The only reason we booked for today at 10:00 AM was because of the DHH teacher's availability. I wanted to scream at her - What do you mean, 'What IFSP' you dingbat! The one YOU made me plan for today. The one YOU made everyone rush for. The one other people rearranged their schedules for...THAT ONE!


So let's backtrack to last Tuesday, shall we:

She (the dingbat*) told me she could only come for an IFSP during her regularly scheduled visit time, Tuesday at 10:00 AM. She said next Tuesday the 13th was best. I said that was fine. I contacted our RC Coordinator and she agreed to the date and time. The RC Coordinator has just returned form Maternity leave and asked if I would like to contact the other providers and see if they could have reports ready for today. I agreed.

Meanwhile, unbeknownst to me, the DHH teacher took it upon her self to contact the RC Coordinator and changed it to another date that worked for HER. The Coordinator assumed that I approved the change so she booked it for 2 weeks from today, Oct. 27th.

Gee, that would have been fine, except someone forgot to tell ME and the four other therapists who showed up. TODAY!

To add insult to injury, not only did the DHH teacher change it, she then lied to me about it.

Today, while we were all waiting (and waitiing) for the Coordinator, I asked her if she had spoken with the Coordinator or maybe someone from her office to make a change and she said, "No." Straight to my face and in front of all the other therapists she claimed she knew nothing about it. ARRRRRRGH!!! I later confirmed that she was indeed the one who had made the change.


The Meeting:

So we had the IFSP meeting WITHOUT the Regional Center Coordinator. Not exactly ideal. And not LEGAL, I might add.

I conducted a round table and everyone gave their assessment of Austin's abilities, goals and recommendations. It was a thing of beauty, I sure wish the Coordinator hadn't missed it all.

Luckily, minutes after everyone left the Coordinator called me apologizing. She thought I had made the change and she outed the DHH teacher. It turns out she had an open schedule so she was able to make it out today and meet with me, alone, at 2:00 PM. We had a two hour meeting; I gave her the update from all the other providers and we signed the necessary legal documents. So now we are legit!


The Outcome:

Just as I predicted last week, Regional Center wants to discontinue funding Austin's OT, PT, & Speech services. Not because he no longer NEEDS them, but because a new State law signed July 28, 2009 says they cannot fund them without first attempting to collect for these "benefits" from our private insurance.

So we need to jump through some hoops and see if his insurance will cover it. If they deny it, then RC will have no choice but to step forward and pay, after we appeal with the insurance. Oh yeah, fun times!  Obviously it would have been ideal to delay this whole process for as long as possible and we would have waited until November if it were not for the buttinski.

So the clock starts ticking today. We have 45 days to get coverage or denial from Medi-Cal. From that point, if we have not heard back from them within 45 days, we will have an additional 30 days NOA (Notice of Action) to discontinue services. So all in all, we will still remain with our current providers until the end of the calendar year.

It is lucky for DHH Teacher that I will not see her again until the 27th, so by then I should be past the anger and frustration. Although I reserve the right to give her a Time Out!



* I feel compelled to defend the School District's DHH "Program". Austin's regular DHH teacher is out on Maternity leave until December and the dingbat is a "temp". She is a retired DHH teacher and is only working for 25 days. So in that span of time she has decided to wreck havoc on my life.

Thanks for peeking,

Be Careful What You Wish For...

because you just might get it...and then begin to hyperventilate!




No, I did not win Lotto or Top HealthBlogger, yet.


Do you remember when I complained about all that therapy homework? Sure you do, because I know you live to hang on my every word. (HaHa.) So yesterday I figured out the way of the Universe - the hard way.


This is how it goes:

I complain about something random like say, homework, and BOOM bad stuff happens. I complain about REAL things like I need a bigger car or more sleep and the Universe responds with Nothing, Nada, Zilch, Zippo. Thanks, Universe!

So it turns out that after all the trouble I went through to get a good schedule worked out Austin will likely be getting discharged from Regional Center services such as OT (feeding therapy), PT (Physical Therapy) and Speech. Well, technically he is not getting cut from Speech because they never started it...but that is another story.


For days, weeks, nay months I have sung the praises of Early Intervention and how much it has helped Austin. I created video montages showing his progress and this is the thanks I get?

Regional Center informed my yesterday that Austin will likely be cut from the program for OT, PT and Speech services. Um, seriously...Deaf kids cut from Speech? Niice.

The reason: Effective July 1st a LAW was passed in CA that RC cannot provide these services for Infants & Children. Thank you Governator for a job well done!



Can I SCREAM NOW??? DEEEEP Breaths!


It has now been mandated that our "Private" insurance cover these services. Um, bad plan. Austin's insurance is Medi-Cal, which is another cash strapped State funded program. How does this make ANY sense?

So next Tuesday, at 10:00 AM I have an IFSP (Individualized Family Service Plan) Meeting set up with Austin's RC coordinator, DHH teacher, Occupational Therapist and possibly the Physical Therapist, as well. Do you think if I offer bagels & cream cheese they will let him stay in the program?

The one thing we have going for us is that, in all likelihood, his insurance will send us a BIG.FAT.DENIAL for the above mentioned services. This may eventually work in our favor, as then RC will be forced to put him back in their rotation. But not without first punishing us for having crappy insurance, by cutting down his services from once per week to twice a month or something crazy like that.

So Universe, I have decided that I LOVE homework and promise not to complain (loudly) anymore if you just fix this!


Thanks for peeking,

Homework

Is it just me?



Or does anyone else with a Special Needs child feel like they are up their eye balls in homework from therapists?

I really thought by graduating from college I would be done with all this homework stuff. I mean Austin is not even 2 years old and not even officially enrolled in school.  Yet suddenly, I have a TON of homework. Never mind the stuff I brought upon myself recently, like switching nursing agencies and potty training.

Austin currently has 5 therapists, which means I have 5 times the amount of things to keep track of every week, including schedule changes to accommodate for {their}jury duty, out of town weddings and plain old cancellations.

The DHH teacher handed me a stack of materials and told me there is even going to be a little quiz next week. And get this, she gave me a VHS to watch. Um. VHS? Do they even still make these?

And God forbid I don't attempt to DO all this homework. I mean, I HAVE to do it because if I don't then my kid will be at the back of the class. Class? There is no class. Whew.

Um. Wait! Yes, there is. They are called the typical kids and we are already behind them. Damn.

I want be one of those moms who has time to bake cookies (and take great pictures of them), make graphically delightful & inspired potty charts, plant flowers that actually grow and blog about it in "my spare time."  You know her. I think she may even Tweet in prose. I am in awe of her.

Instead, most days I am the mom who feels snowed under by this, that and the other thing and wants to live out the rest of my days in a blissful spa experience. (You can't blame a girl for dreaming.)

But not today. Today I am busy doing my homework.

Thanks for peeking,