High Definition

Holy crap…I’m in HD…really I mean it.  I got new glasses for the first time in years, decades, eons…you get the point…it’s been a long damn time….and I don’t like it.  Don’t get me wrong I totally enjoy being able to see (especially when I am driving) but I wasn’t so excited to see myself.  I’ve been living in  my own misty, blurry, vasaline on the camera lenz, photoshop haze for some time now and well…it wasn’t so bad…but now…yikes!  How could I not have known that I looked so damn old??????  When did I get these lines around my mouth that make me look like a freaking puppet?  AND why didn’t anyone tell me that my skin looked like that…ugh..ugh…ugh.  I am totally jazzed that my frames are cute (Coach…love…don’t tell Charlie) but I am NOT jazzed that I had to get 2…yup…2 pairs.  One for distance (street signs and the scoreboard) and a pair for distance.  I can’t do the whole progressive bi-focal thing so for now I’m doing the 2 pair thing.  Soon I’m going to have to get a chain like an old lady to keep them organized.  A pair on my face and a pair around my neck.  The “Reading glasses” or as they should be called...the “holy crap I have newsprint on my nose if I don’t wear my glasses “ pair are also super cute…Kate Spade (again…don’t tell Charlie)   I mean he was standing in the eye place with me but he was walking around with Alex so I’m not 100% sure if he was paying attention to my selection or not but just in case…shhhhhhh.  Now the eye doctor could not put my full strength scrip in my glasses because he was worried that 1.  My head may explode and 2.  I would fall down…a lot.  Even at half strength the floor is a lot closes and I have taken a few GIANT steps off the curb and just about biffed it in the gutter…sober…graceful aren’t I.  It is nice to see…it’s a good thing Charlie is a god looking man because I realize now that I haven’t SEEN him in years…but his eyes are great so he has always loved me…puppet lined face and all.

EF You Forrest Gump

We had Physical Therapy today.  Just like we do…every Monday…at 1:00…because I have nothing better to do on summer vacation.  Alex actually likes it,  they have a ball pit.  When you are 2 can you ask for anything more?  But today was one of those days that just piss me off because, honestly, if you have an inkling months ago wouldn’t it be better to tell me then as opposed to today when I’m already hot from the 150 degree weather and the poopy 7 year old who bitched the entire time he had to hang out at therapy with his brother? (wow…run on sentence)  But the answer is obviously NO because then I wouldn’t have been surprised (and pissed) over the revelation that Alex needs braces.  Not the Marsha Brady can’t go to the dance kind of braces…nothing tasting like metal for my little man…the EVIL, PLASTIC, VELCRO,BOOT, FOREST EFFING GUMP LOOKING BRACES.  Because putting a helmet on his head 2 summers ago wasn’t bad (mean) enough…noooooooooo, now were going to make him have blistery, stinky feet.  Why? Well….to be honest when he walks/stands he looks like Bambi on ice.  His little ankles roll in and he never used the outside edge of his feet.  I don’t even think he knows that he has an outside edge to his feet. So once again it is “Lab Rat” time and we must get MORE equipment.  I know that this will help….I”m gonna strap his feet in the little braces every day (b/c ya know Mr. 25 ain’t going to do it) but it doesn’t mean I have to like it…….so the next time you want to make fun of some ding dong running like a dork just think of Alex and know that if you EVER make fun of HIM I will make you smell one of those sweaty, stinky, slimy little braces that he will wear all summer long.

Top 10

Top 10 things to NEVER say to me……

1.     1.  You are so lucky your husband is home every day for 4 months (what about the 8 months he’s gone)

2.    2.  God gives special babies to special mommies (I don’t want to be special)

3.    3.  What doesn’t kill us makes us stronger (yup, made me strong enough to kill you)

4.    4.  We are doing everything we can….(really, then get someone else b/c you suck)

5.    5.  Oh, he’ll catch up (when…cuz I’m waiting)

6.    6.  My sister’s (brothers, neighbors…someone) baby had a hole in his heart when he was born, it was horrible.  (People, you haven’t seen horrible)

7.    7.  He doesn’t walk?  What wrong with him? (well, jackass, I was to lazy to teach him to walk and having him dust my floors with his butt seemed like a better idea)

8.    8.  I put him on “blah blah” prayer list.  ( I know you mean well but how is a list going to help)

9.   9.   It’s in Gods hands (really?  Cuz God dropped the ball on heart formation day)

10.  10.  What’s his life expectancy?  (longer than yours after I rip out your throat)

So now you’ve been warned!  J

Other peoples kids.....

I am waiting for the day that I am not irritated by other peoples children.  Not the loud ones….good God, they irritate everyone, but the good ones…the cute ones…the kids of my friends, neighbors, and other baseball wives.  But I am not getting there.  I try to chant in my head my own personal mantra…it’s not their fault…it’s not their fault…it’s not their fault….sooooo QUESTION OF THE DAY….whose fault is it?  Is it mine (probably yes, most things that are in this blog are 100 % my fault), is it theirs…no…not really but if they hadn’t been so damn normal I might feel  a little better.  Yes, I said it….I do not like the normal, age appropriate, milestone reaching children of this world.  I am happy for you that your child is the same age as Alex and can run, jump, eat, talk, loves Toy Story…hell, can even say cute pick up lines.  What I am not happy about is that in your desire to show me your kids new trick (which you have every right to be excited over…but hey, this is about me) you seem to forget that MINE doesn’t do any of that.  I KNOW that every child is different…..I KNOW that Alex had the pleasure of having a tube jammed down his throat for the 1^st 6 months and the awesomeness of having his ribs cracked open not once, not twice but…wait for it THREE times….oh the JOY!!!!  I KNOW that every thing he does is a flippin miracle…but I don’t want a miracle…I want normal.  I sat in Durham at a wives lunch where we all just hung out and chatted and Alex ate pizza…it was awesome, amazing, super duper cool AND it was great that the wives that were there with me knew that this was a HUGE milestone for him, and they were excited for him….BUT why do I have to be?  He should have been smooshing carrotts and peas on his face at 6 months not only getting brave enough now.  Look, I know that my kid is messed up…he deserves to be.   You have all that crap taped to your face for all that time and tell me how comfy you are with a fork coming at your lips, but still.  There are kiddos who are starting to walk…Alex doesn’t.  Tyson wrote a damn story about it…..it was his 1^st grade “feelings” report.  “My little brother, Alex is special.  He is 2 ½ years old.  He will be 3 in October.  He still can’t walk  or talk.  It makes me sad that he can’t play with me.  It makes me sad when people ask what’s wrong with him.  It makes me mad when they ask if he is dumb.”  REALLY???????  Is he dumb?  Nope.  Is he lazy?  I’m voting yes, but I’m lazy too and if someone would carry me around all day I’d totally let them.  We are making strides every day here in Casa Alex but don’t be mad if I don’t applaud when your kid starts to walk, or waves “bye bye” at me.  Don’t be mad if I don’t comment about it on FB…which I’m going to take a break from soon.  So to all you proud mommys and daddys out there…good for you…go talk about it to your other friends.  Do I care about you and your kid…yes.  BUT…..I am a big bitter mess who has to fight with the insurance co., the therapists (yup I got a few), the doctors, the health care supply people…crap, even the airlines cuz they don’t make it easy.  I have to feed my kid thru a tube in his tummy because 1.  He is scared to death of anything coming near his mouth (getting braver) and 2.  His vocal chord is paralyzed so it doesn’t close to protect his airway and sometimes (lots of the time) the stuff ends up in his lungs.  So when your kid starts chewing gum at the miraculous age of 10 months I don’t want to know about it. I’ll find out that he’ a gum chewer when he gets it in your hair.

An Old FB note...but still fitting...from spring training 09

Jen wanted to know why I was on FB at 6 am this morning. Well, I had been up for hours. Now after all day I am so tired. I know that it is only 8:30 but I could sleep for the next 6 days, but can I go to bed? NOOOOO...I have to be up, all the time, at the beck and call of everyone. Waiting for my husband to figure out what he did to his isight camera, waiting for Tyson to stop talking and go to sleep, waiting for the next thing on Alexs' schedule. At some point my face is going to crack open, or my hair will fallout, or maybe (god forbid) I will become immune to the powers of a hershey bar chased by a Pepsi. You would think that the doctors would be concerned that I look like walking death and that I have to dispense a potentially lethal combo of drugs to such a little person, but they're not. They want more. More therapy, more medication, more research. Tyson's school wants more, be a parent helper, mandatory volunteer hours. Major League Baseball wants me to bleed for them. The fund is supposed to be private and anonymous. Not for me. I'm the damn poster child. be at the D'back's clubhouse at 7am on a sunday with 2 kids and full make-up...sure, why not? I'm going to do it again on Monday with the Rockies and hope to God that more of them remember me as Charlie's wife and not as the queen of the Orange Shorts (like some of the D'backs). It will be fine. But my husband will call and complain that he is so tired, his life is hard, that leaning in center field on a Fungo is sooooo hard. He leaves in a week from Port Charlotte to Puerto Rico, on a private plane, to a 5 star hotel, to an island that treats him like he's the pope. My job will be to say "poor you, it is hard, I understand" because at the end of the day it'll be funny...i'll go to bed...my eyes will burn when I close them because they are so tired...I will be unable to sleep..Alex will cough and choke, and dump his own saliva into his lungs. Tyson will hear it and freak out and come to sleep with me, and the cat,the wonderful cannibalistic cat will decide that since there was movement someone better give her a treat or she will bite the crap out of you. Alex will calm down, Tyson will snore, I will lay down...until the alarm goes off at midnight and 2am and 4am for medication and the feeding pump or the next oximeter tests that the docs want. I'll get up and get Tyson ready for school and get thru the day, every day, and stare at the moms at school that are making lunch plans and going shopping...they will smile and tell Alex they are praying for him and then ask me why I didn't make it to Mass. They will offer to help, until I ask them to, then they will disappear, busy, out of town, or just avoid the subject. Tomorrow is ash wednesday (Tyson told me), so for Lent I am parking my invisible jet and taking off the stupid gold bracelets (but I'm keeping the lasso for my husband) and I am giving up Not Sleeping. I'm going to try and give up panic, and worry, and maybe a little shortness of temper (but not to much....i'm still me). Or maybe I'll give up the hershey bar chased by the pepsi (and switch to a kit Kat followed by a coke.)

BIG PIMPIN......

They gave us a Hummer.  Well, I guess that "give" is the wrong word...lent, made available, begged us one....those could be better terms.  As part of Charlie' s deal he gets a car for the season from whatever sponsor they have.  It was Saturn (which doesn't really exist anymore) now Hummer.  It's huge!  I drive a Volvo, a little one at that...teeny, tiny,good on gas, easy to park...so the Hummer...eh.....not so much.  So I had to dive around Durham in the BIG PIMPIN HUMMER.  I got lost alot.  Not only b/c I haven't driven on a real freeway in for-ev-er, but because there ae so many damn trees.  Really people, how can you see around all those damn trees.  It's North Carolina not Yosemite....anyhoo...after trying to figure out the navigation sysyem I quickly gave up and used the google maps on my phone.  Now I am not an idiot but I could not figure out how to make the "voice" work...it just kept playing the radio anf showing me where i had been, NOT where I was going.  Lame, lame, lame...but it had a sunroof and I figured I could just run over the trees if i needed too so it worked out.  But I'm jumping around so I'll start at the...

AIRPORT
Now I am a good flyer.  I plan.  I pack.  I have all the appropriate prescriptions and doctors notes to get Alex on the plane as well as all of his crap.  I have movies and DS games for Tyson.  But what I don't have is a sign that says "Yes, I look fine but I can't walk...please do not descriminate against me b/c I am not 90...I need help to the airplane".  I don't have a sign like that so I had to do the whole thing without any major muscle.  Tyson was awesome...carried his backpack, lunchbox, and my purse.  I had the carseat, which we had to use on the plane, diaper bag, tickets, and the amazing non walking, heavy as hell kid!  Once we got thru it it was cool.  Charlie picked us up at the airport along with his younger brother, wife, and my 2 nieces.  Some one must have warned my sister-in-law..she was actually pretty subdued (LOL).  Luckily for Charlie, they were there so he had help with my bags...I pack well...not light.  My niece on the other hand is the queen of pictures.  She took about a million in the airport, flashing the "deuces" with Tyson...can't wait till he explains that a peace sign isn't a peace sign anymore...it's deuces....to the nuns....grrrreat!

GAME
The next day was the game btwn the Bulls and the Rays.  Tyson went to the field in the morning with Charlie to play, and get autographs from the big-league guys...which he never did!  He sat in Charlie's office and played video games...nice.  That's why kids in the US are fat...their dads are professional athletes with access to everything and they STILL sit on their asses and play nintendo.  What a dork.  I love him but he'll be mad at himself later in life so whatever.  AND let me clarify that Tyson is not fat.  He is actually so damn thin that I am trying to convince him that candy and Hagen Das are food groups. So before the game, Alex got to go out on the field and walk around with Charlie and people were yelling "go Alex" and clapping...it was awesome.  Then he went with Charlie to get his ring. Does anyone else think it's wrong that my husband is wearing more diamonds than I am?  (and I'm not counting my earrings but even if I am he still has more)  Holy Moly!  Twinkle twinkle big ass ring!  He's actually wearing this one which is amazing.  He never wears the AL ring or the Biscuits ring.  I know he has others from when he was a player but he has given them away to his family but they'll come back to our house at some point.  Anyway...game...hot...long...walked up alot of stairs...and had to be nice to the "prayer people".  Now I'm not going to get into the whole God thing again...we all know my stance but the prayer list does seem a little weird to me, but again...just me.  So I spent a good amount of time listening to old people tell me that they had put him on this or that list.  Thank you very much for your prayers and thinking of us but now I'm going to have to move on so the next 80 bjillion people can tell me how he was on a list in Timbuktu.  BUT I did finally get to meet some Rays big-wigs that I have only spoken to on the phone.  They didn't look like I thought they would...for some reason Chaim was blonde in my head but he's not...again...not the point.   After we went to dinner at Chili's and I was STARVING!!!  Maybe I wouldn't have been sooooo hungry if we hadn't had to go back to the apartment and Skype with P.R.  I personally hate Skype...it looks grainy and I don't think it's a camera issue.  Everyone should just have a Mac so we can Ichat with whomever.  But we had to Skype with the PR family (took forever...really how long does an I love you, miss you and hope to see you in person soon take).  So FINALLY we went to eat....yummy!

AFTER
Basically after that I hung out.  Tyson went to the field every day with Charlie.  I went to Moe's with Nicole (and alot of times without Nicole) and went to lunch at Mellow Mushroom with the wives.  Let me say in defense of the "wives" we are not stupid, vapid, or gold diggers.  We are highly organized people who have to be wife, mother, accountant, moving man, tax doer, and ego soother all at the drop of the hat.  Ego soother would probably #1 on the list....baseball husbands can act a little like babies, especially if they are losing or not hitting.  So we went to lunch....6 of us...2 babies...1 set of twins...and Alex.  Now Alex, much to my surprise decided that on this occasion he would......wait for it.....EAT AN ENTIRE PIECE OF PIZZA!!!!  I know...I know...how did this come to pass?  Who knows!  But he ate it, took over an hour but he did AND he didn't choke or gag.  Right there made him braver than Tyson when it comes to new food.  I was very excited the entire time even though I was trying to be cool about the whole thing.

After that, we flew home the next day, almost missed our connection and thankfully was picked up by the amazing driver who carried my bags without giving me any lip.  Now I have to do it again this summer......

Baby Jesus of the closet.....copied from the original rant

Baby Jesus of the closet is a statue or at least he was. Since Alex has been sick, people have been sending us "relics" and other holy, but gross things. Personally, I find it a little freaky that there are little cards with itsy, bitsy pieces of bone or clothes from a saint who lived 500 years ago. It also freaks me out that people actually buy them. Now if you are my friend you know that YES, I believe in God, but I am not big on RELIGION. I find them to be 2 seperate issues. ANYWAY, a few months ago I received a box at the house for Alex. Inside was a statue of the Peurto Rican baby Jesus. Now if you have never seen that particular baby Jesus, i can only describe it as pastel but neon at the same time. He looks like a little girl, blonde, floating in a pink (pastel but neon) dress. Also let me mention that the statue was 2 1/2 feet tall. That's right people 30 gloriouse inches of Pink Plaster Jesus. So this particular statue did nothing to enhance the decore of my home and it was huge...so...I put him in the closet. I actually put him in Alex's closet because that was I could tell anyone who asked that yes it was in his room. Well, when I was hanging up clothes and putting away the tons of medical supplies in his closet Baby jesus of the closet had an accident. He fell off the top shelf where I , honestly, had stuffed him and his head....broke...off. It was a pretty clean break, I could have glued him back together, but, alas, I did not. i took advantage of this accident and chucked baby Jesus of the Closet out in the trash so he became Baby Jesus of the land fill. Then my mother in law came to visit. She was not here for 10 minutes when she asked Charlie (not me b/c I don't speak spanish, but if I had known that half my family would speak spanish I would have taken the lessons instead of 800 years of french...moving on)) if we had received a statue of Jesus. She was sure that we had not received it because she knew that such a lovely statue would be proudly displayed in our Ethan Allen/Pottery Barn explosion of a home. Of course Charlie asked me and I said that Jesus had broken, that his head had come off. Now out of the corner of my eye I see Tyson, who feels like he is smarter than us all about to add his 2 cents. So I, not wanting to admit that it was a clean break, say the Baby Jesus "SHATTERED" into 1 bjillion pieces! So I thought that was the end of him. But NOOOOOOO!! Baby Jesus of the closet is haunting me. We went to the Neuro Surg. about Alex's neck which is all messed up from pulling against the ventilator for 6 months, but earlier that day I had lunch with Regina and told her about Baby J in the C. We were laughing about his unfortunate ending and when I went to the surgeon what did he say? "Stretch his neck and do it 5-6 times a day" now if you read the earlier note then you know that Alex turns blue and screams bloody murder to the point that I have to get the oxygen out. But that's what I get for breaking off the neck of the baby jesus and lying about it. But now kharma has gotten me again. 1 week ago we got another box. inside was another statue....the Virgin Mary. BUT, this Mary has a special quality. When you walk around the room her eyes follow you and they are painted with the glowy stuff so when you turn out the lights.......they glow. Who the hell makes a glow-y eyed Virgin Mary??? Anyway, Mary is now the Virgin in the closet (mine not Alex's or Tyson's) because those eyes would scare the living shit out of Tyson in the dark. So now I know that every time Alex has a step back with his neck it's my punishment for breaking the head off of Baby jesus of the Closet. BUT, that does not mean that I want anyone to send me another one or any other relic...your thoughts are enough. OR you can send them to Charlie and I can laugh when he has to stuff them all in his suitcase at the end of the season!

All Hail the Mighty French Fry.....

If I haven't mentioned it before, I have a $700 blender...yup I do...I'm super cool.  Actually it's a Vita Mix and it's supposed to make the best frozen beverages in the world but who would know about that in my house.  Since I have this golden blender  ( which I actually had a prescription for) I took Alex off the "box o' formula" that he has been basically living on for 2+ years.  Kind of scary right....hell yeah!  So now I blend (liquify) all sorts of fun stuff and jam it into his tummy via tummy button/connector/syringe.  Easy right?  Hell no...not easy because all my people (Cardiologist/Pulmonologist/GI/Feeding therapists and neighbors are all up in arms over calories.  "He has to have a certain amount of calories in a day" or "He can't lose weight"  those are my favorites.  Really he can't lose weight?  No dumb ass...I CAN'T lose weight....I try but I CAN'T.  Alex can lose weight because you people were so freaked out over the last surgery that you pumped him up with everything BUT steroids and he was a fatty.  But regardless they have me all freaked out.  I have measured and weighed everything.  I have now decided to feed him like a 2 year old just better.  So he has Cheerios or Raisin Bran, milk and 1/2 yogurt for breakfast.  It's about 200 calories...but he doesn't get all 200 calories b/c normal people don't have their breakfast stuck to the side of the blender.  Damn!  So now I have to figure out how to make 2000 calories worth of liquid food, that fits inside of 3 syringes over 5 times a day so thats about 450 per meal...math bad....AND then it hit me....MCDONALDS!!  I hate McD's.  It's not my thing.  Something that I do not enjoy...I also hate veggies so it's not a health decision but more of a foul greasy smell kind of a thing.  BUT that Sperlock guy got me thinking.  If Alex was "normal" he'd be chowing down on a happy meal on occasion...so what if the happy meal went in the blender?  That would have to be a bjillion calories right there.  The other thing I realized was that I was feeding him too well.  It was like the kid was on the South Beach diet...healthy fats, veggies, fruit...milk (skim)...no carbs.  How do you gain weight without carbs.  Personally I was avoiding the carbs in the blender b/c they kind of turn into paste but it's a learning thing.  So that's the plan and I guess the docs will just have to bite me if they don't like it.  It's not like they love me now.  But, back to the original thought, Alex has decided that french fries are good...not to eat...but to hold and wear as a hat.  But it's progress...I guess.  He likes the ones at Chilis b/c he licks his fingers afterwards.  He is so my kid....all about the salt.  We now have 2 "lickable" foods...Cheetos and French Fries.  So WOO HOO on the fries!   If anyone has any other salty, but not easily breakable items that coulb go in his mouth I'm open for suggestions.  he was playing with some Ritz crackers and accidently took a bite ( I was soooooo excited) and freaked out (me no longer excited) because he's never had anything in his mouth before and he had no idea what to do with it...chewing?  What's this chewing you speak of???  So I stuck my finger in there and yanked it out and yes he bit me and it hurt....like I said...chewing???  Teeth...what the hell are these things for???  Hopefully he'll get braver..I'm not all that hopeful.  Tyson is just as bad...picky, picky, picky...

God Bless Chester Cheetah!!!!

As we all know, Alex and food are not friends.  He thinks that anything coming near his mouth is evil and destined to piss him off.  BUT..we have been playing with food.  Cherios, ritz, pretzles, and now he can touch it and not 1. gag  2.  cry  and 3. throw it back in my face.  Personally I am a big fan of the not throwing it at me. His latest trick has been with the Cheerios.  He scoops them up from the bowl 1 at a time and ACTS like he is going to eat it off his spoon, but then he flicks it over his shoulder and puts the empty spoon in his mouth.   Soooo for the past few days he has been brave....putting the Ritz near his lips..putting his front teeth on the Nilla Wafer...but today....woo frickity hoo...I bought some Cheetos!  I thought that if he played with them that he would get orange fingers and maybe he would put them in/near his lips and he would taste something besides air.  But that is NOT what happened...what happened was that I sat him at the table with me. I put some Cheetos on a plate for me and some in his "cow" bowl...very cool...moos when you touch the spoon to the inside of the bowl...and what did he do????  HE PICKED IT UP AND PUT IT IN HIS MOUTH!!!  Now he wasn't going to bite it because he has no clue what to do with it once it gets into his mouth but he was sucking on the Cheeto!  This went on for about 45 minutes until we had a bowl of soggy, naked Cheetos.  Salty and cheesy...he is soooooo my kid.  So now the question is...How do you teach a kid to swallow?

My name is Samantha and my son is an addict....

For a kid like Alex, you would think that all of my constant bitching and stress would be directly related to the fact that his heart is a piece of shit...and I mean that in the most loving way I can think of of...but his heart id not my curent issue. It's his damn tummy. That button is going to drive me c-r-a-z-y!!!!! We went to see Dr. GI...remember the crazy lady I almost smacked...well, while I was there he gave me a prescription for Clonazapam, or as it's known around here in the "hood", or my house, CRACK. Great, another controlled substance for the almost 2 year old. Really people, why, why, why do we want to have him so strung out???

We have this stuff b/c of the oh so wonderful gagging and retching, sort of like the dry heaves after a looonnnggg night of tequila. Every time he "eats" or is "hooked up" to his pump he starts to gag, cough, heave and whatever else he can do about halfway thru his meal. Now, if I had called the feeding therapist she would have said it's a volume thing, the sensation of his tummy filling blah blah blah......as you can tell I've heard this alot. So I tried to slow the pump down to decrease the sensation...didn't work...then I tried to speed the pump up...hmmm....wait, I think I'm seeing something. He coughs based on time. Now when he coughs and gags he does usually throw up BUT it is usually alot of mucus and watery stuff from his lungs b/c he is coughing so hard. If he isn't throwing up formula which is in his tummy, and he better NOT be throwing up formula since he had a surgery to make sure what goes down does not come up then there is no reflux, the prevacid stopped working, must be behavioral or a really bad habit. GRRRREAT.

That means Alex is on crack. It's sort of like baby Vicodin, which could be funny except that I spend 90% of my day trying to get him to be mobile, crawl, stand, walk or something. Vicodin is not going to be helpful in that area. Then we have the oh so lovely side effects....yes I do read the insert...seizures, brain damage, suicidal thoughts.....do not stop taking....must be weaned...son of a bitch! I went thru this already with the Methadone....I had a 6 month old who was all tweaked up on Meth and I had to wean him soooo slow. It took months and now I'm looking at that again? Not to mention that his Physical Therapist is moving out of state in 3 weeks and then whom I going to get. There aren't alot of pediatric therapists in town, damn Tucson. So we are using this "Anxiety Medication" to hopefully modify his behavior or break his habit. His going to have a worse habit...crack!

Thank you Edward Cullen....

So I guess my Volvo is finally cool, all because of Twilight, or at least that's what I heard at school today from an 8th grade girl. "That's what I want when I'm 16, a Volvo (drool)"...hmmmm....ok...swedish safety is cool. Nope Edward is cool and I'm just lucky enough to take advantage of it when I can. Tyson knows this little girl, he knows all the girls from Kindergarten up to 8th grade, that's my boy. But after Tyson went to school I took Alex to the doctor. The Gastro-intestinal guy. Woo Hoo. If talking about reflux makes your day then this is sooo the place for you. Normally a very boring visit except for the rather large lady, large in the sense that she took up almost 3 chairs and her large son, who took up 2. Now I take Alex to feeding therapy and so on so I see the range of kids....super skinny Minnie's and super big ones with gene disorders that would put me over the edge so I didn't think anything of them in the waiting room. BUT it is a waiting room, a small outdated waiting room that almost turned into a boxing ring b/c I was going to kick that fat bitches ass up and down Tucson Blvd. I don't really like to fight. I like to yell, i'm really good at it but the actual fighting part sort of scares me since it has been many years since it was required of me...Outback Bar...downtown...Myra...Hooter girls....lemon drops....ouch...anyhoo, this is how it goes:

Her: Hi baby, hi

Me: Alex can you say hi, can you wave? (now we all know that he can't but this lady is a stranger and i'm being polite)

Her: How old is he?

Me: Almost 2.

Her:What's wrong with him?

Me: Oh just feeding stuff, tube you know?

Her: He won't eat? he can't?

Me: No, frequent hospital kid, big aversion, we're working on it.

Her: Hospital?

Me: Oh, he's a heart kid....3 chambers...a couple surgeries...he's had so many tubes he doesn't like anything in his mouth.

Her: You can't live like that! when's he going to die?

Me: Excuse me?

Her: He's gonna die right? soon?

Me: uh, no, not today!

Her: so when, you shouldn't make him suffer, having surgery...blah blah blah....

Me: (Ignoring her but seeing red, literally and getting a little tunnel vision)

Her: BLAH, BLAH, selfish, putting him thru....

Me: Are you fucking insane? (standing up, putting stroller behind me) who are you? You aren't my doctor. Why are you here...putting your son thru this? Did I ask your opinion...you don't even know me!!

Her: I'm just saying what I think...Oh, did I offend you?

OK...so I think I growled at her and I definitely lunged at her and somehow the nurse was there and so was Dr. GI who had a look like "oh shit!" on his face and tried to get me in his office. I was still pissed so...

Me: lady, I swear if you are here when I am done with this appt. I'm going to wait for you and you and I can finish our conversation about how offended (with air quotes) I am!!!!

Needless to say I didn't wait because 1. She could totally sit on me. 2. If I had hit her it would have been absorbed by the massive cushioning that she had. 3. I really am to old for someone to call the cops. But it's ok. Sometimes it's good to have these crazy people come and get up in your business. It just reminds me that there are way worse things that Alex's heart...he could have been stupid.

Would you REALLY want to know?????

I have a FB friend, sort of random, I know, but stick with me. Her kid is an Ebstein's kid just like Alex. Here's the problem...she's still pregnant. Oh and she lives in on a different continent. She could have a premie in 4 weeks, but knowing what I know about what they are going to do, what they need to do for the baby, I can't think of anything remotely supportive to say. We all know about me and "faith" and all that so there's no need to go into it again, but really, WTF.

I didn't know while I was pregnant, they just didn't find it, or maybe they sort of did but their concern was on other things that day, who knows, but I'm I still don't know if it would have made a difference. 1. TMC did not have Nitric Oxide which Alex totally needed to stay alive. I guess it helps them breath different in the first few days. It lets them breath slower...like fish...like they're in the womb. 2. I had no clue what EA was, of that it was any kind of big deal. 3. the worst thing is that, while he was in the helicopter flying to PHX and we were on I-10 I was hoping, thinking, (can't believe I'm going to admit this) if he is going to die then do it now. I had only seen him for 10 minutes, Tyson had seen him for 5, no one was invested, we could heal, we could go forward, we could get over it. All I could think about was Tyson and how my sweet boy was about to get royally screwed over.

Then we were there and it sucked. Every day was something. At least I was somewhere that gave you info...alot of info...broken down like I was a first grader. The balloon thru his heart, surgery, the breathing tube, Ronald Mc Donald House, taking turns sleeping in the PICU, the LIGHTS...if the lights came on at night you knew the shit had hit someones fan...hopefully not your fan. The death. Kids coming back from surgery with their chest still open, not really kids, babies, like Alex, all in the hands of people that we didn't know but had no choice but to trust. But every night, the same thoughts...um God, if you're going to take him, then do it...stop dragging it out. But as I said, I didn't know ahead of time so I'm not sure which is better...total shock and horror or preparing for shock and horror and having it be a big giant cloud over you all day, every day for months and months.

I asked Tyson if he thought it would have been better to know ahead of time. Now remember, Tyson is only 6. His answer "duh, mommy...he could have gotten to the "hoss-i- ble" faster, he could have had surgery faster", out of the mouths of babes right? So i think this is a pretty even, Maybe. I think I would have preferred to not know...no...knowing is better...shit, I don't know the answer. The only thing that I am sure of is that if I knew then, what I know now I would have had some different conversations with Charlie about having kids. Let me tell you this: if you are not on the same page with your spouse about medical issues ranging from immunizations to abortion to blood transfusions to aspirin vs tylenol...YOUR MARRIAGE WILL NOT SURVIVE. Am I on the same page as Charlie on everything...nope. Am I so damn scary in the hospital that residents cry and quake...yup. Charlie has a tendency to agree with me on most things, but when it comes to Alex he will NEVER make the decision about his care. It's scary. What if your wrong? Charlie doesn't want to be responsible for that...it's ok. If we had know ahead of time, we probably would have come close to a divorce. That should give you a glimpse on where I stand vs him on certain issues. We've had other talks about transplant. The waiting, Alex's age...what if Alex is 16 and has been waiting for a year and is on the verge of death and just wants to be done, to go home, without needles and IV's? That's the current discussion. We don't agree. Hopefully we'll have 15 years to reach a decision.

Why Yes....I Am The Worst Mother in the World.......

The crawler...dum dum duuummmmm! It is this wacko, homemade thing that is supposed to help "delayed" or lazy kids learn to crawl. Not that I'm complaining that this one is homemade. the real deal is about $1000.00, this one is a loaner from a place called Adaptation Station that alters stuff for kids with disabilities or Alex. They altered his little Radio Flyer car for him...seat belt,,padded seat so he wasn't a big slouch. BUT...the crawler....I've been waiting to use it when he was doing better with his neck and not having the big freak-out every time he was on his tummy..so...today seemed like a good day to try. Did he like it, NO. Did he want to be in it, NO. Was he screaming bloody murder, YES. Was he the most miserable kid on the planet, YES. Was I laughing a little bit because he sort of looked like superman, YES. Did this experiment frustrate the crap out of me, YES!!!!!

But because I am the worst mother ever, I kept him in it and helped him use his knees to push across the floor. So he screamed, and cried, and coughed....well...because crawling requires one to take their damn hand out of their mouth...oh no...the Horror!! But we made the circuit from the living room to the dining room....I took pics and a little video. He needs to be mobile. He needs to get on with it. I want him to catch up to the other kids. I remember when Tyson was this age running around at the mall and sooo excited to push the buttons on the elevator. I got the "newsletter" form the public school district the other day and it talks about special ed. That is not what I want for Alex...his brain works his psyche gets in the way but the school won't care. They'll label him, spend 5 minutes a week with him and call it speech therapy, THEN they'll tell me I'm so lucky to be in the program. Um OK, I've seen the program on other kids...no thanks.

So I am now going to push and prod him until he is crawling to GET AWAY FROM ME!!! I 'll take it. Just move, crawl, walk,run, something before I go insane. I love Alex but carrying around a dead weight bag of flour is NOT what I signed up for. I've done his schedule, tried to be helpful and supportive...sorry baby, time's up...you're in my world now and it's going to suck...just ask Tyson.

My Friend the Witch Doctor.....

***WARNING and CLARIFICATION***

I believe in God, I am not a big fan of religion. For ME, they are not mutually exclusive. I am open minded to a fault. I believe that if my marriage ever ends it will NOT be because of infidelity or some other thing but a direct response that Charlie will have to my inner hippie. Tyson goes to catholic school because I want him to have a quality education and learn with kids that have the same values....notice i did not say religion. That's Charlie's thing, not mine, important to him but I don't care. It's my job to teach my kids about GOD, not teach them how to be catholic, lutheran or anything else. The only thing I can do is give them all the info and let them make their own decisions. So things that do not help me as far as i am concerned are: God only gives you what you can handle, God must have thought that you were a special person to give you a baby that he KNEW you could take care of, and my personal fave would be: God is always with you....um if that's true where was he when Alex's heart was developing...playing bingo? So I am a little (lot) bitter, just so you know, don't jump my shit when you read about DR. CP.

Before Alex had surgery I had arranged for an appointment with Dr. CP. He is a Cranial-Sacral doctor. Now I'm not 100% sure what a cranial sacral doc is but I do know that it took me 6 months to get an appointment. I had talked to other people who had seen him and other people who had taken their extremely complicated medical children to him and they had seen an improvement. He could be a voodoo doctor for all I knew and I would have brought a tarp to catch the chicken blood...don't want to ruin my shoes. I'm looking for help, and I'll take it where I can find it. Charlie isn't so sure. Anything that isn't set in stone makes him nervous. It's his way. He doesn't understand biorhythms or eastern medicine. Faith is his way...so this goes against everything he likes. But tough shit. If you could pray away Ebsteins I'm sure that the island of Puerto Rico would have accomplished it by now. So we went...so far twice.

The first time i though i was going to end up in Phx. because i was driving forever down 5 different dirt roads. Now as I said I am very open minded. I had already tried to find a baby acupuncturist and multiple pediatric massage therapists...no luck. If Alex had been able fly over water I would have taken him to China. But since that was a definite no I was happy to meet Dr. CP. He is a very religious man. There are paintings and statues and crosses everywhere. He asked me a few questions and then had me lay Alex on a bean bag thing on a table that sort of looked like a futuristic massage table. Now to me it looked like all he did was hold Alex's hips, ribs, and neck. Nothing else. No rubbing, turning or squeezing. Alex was pissed...he doesn't like people he doesn't know touching him. Holy crap, he was screaming his head off....and then....he stopped...passed out...cold. ARE YOU FREAKIN KIDDING. When Dr. CP was done Alex woke up and he was a big sweaty mess, the hair was awesome. I went to use the bathroom and I put Alex in his stroller and left him with the doc and friends. When I came out they were best friends. Alex was happy and smiling, sweaty, but smiling. They said to call if anything was weird.

It got weird. Some good, some bad. First, Alex was louder...a lot louder. He was babbling more and started rolling again. Secondly, he stopped sleeping. Alex had been sleeping thru the night...yes he wakes up at 4:30 but that's what happens after you spend month is in the hospital and that's what time they do your x-ray. But now he was waking up every 2 hours and he was pissed. Screaming bloody murder, no comforting him, just pure pissed-offedness. So I called. They said bring him in, we had opened something up that had to be worked out. When we got there Alex was sitting on my lap. Dr. CP came over and sat next to me and sort of jiggled Alex's feet like I do when we are playing. AND THIS IS WHAT HAPPENED: he closed his eyes, jiggled, and said "hmmm, I see, ok, there's the spot" wwwhhhatttt? How do you know? Then I laid Alex on the table again and he help his hips. Then his ribs...and said " in a minute he's going to be really upset" (1, 2, 3, 4........whaaaaaaaaa!!!!!) He never moved a finger, not a muscle, just sat there holding his ribs with his eyes closed. Then Alex stopped. Same thing while holding his neck. I have no clue what was going on. Was he talking to his body? Not sure, but Alex is sleeping again...we go back next week.

This guy could have rubbed peanut butter all over himself and done a rain dance and I wouldn't have cared....if it works. But his neck seems a little straighter, and he's rolling everywhere on the floor. I've got a bunch of doctors, I do what they say. But this one...had answers to my questions...so for now he's my little secret.

Big Slacker

I will update soon...surgery great...discharged already....home tomorrow!!!

Have they ever heard of volume control???

Ok...I've been a giant slacker on getting to this but the 4 hours of sleep i've gotten in the past 36 hours allows me a little bit of wiggle room. Here we go....

July 2nd.....we have to be at the hospital to check in at 4:45am...that 15 minutes before 5 must make a huge difference to someone. So I got up around 3:30 ish to take a shower, hair, make-up..all the typical me stuff because even though it's surgery day AND it's O' dark thirty i'm still going to be at the hospital allllll day so I figured that not looking like I hadn't slept was a good thing. We got there...and we waited...and waited...and waited...got put in a little room with curtains...and waited.....and waited...are you seeing a pattern here? About 7 am everything started going...consent forms for the anesthesiologist...a little "relaxing" medicine for Alex (Charlie and I could have used some too) and a hazmat suit for me to go into the operating room with Alex. BUT they had given Alex the "relaxing" medicine so as we are walking to the O.R. he's getting drunker and drunker...so ..by the time they put the medical shower cap on me, then one on him he was cracking up....funniest damn thing he had ever seen...then they waved some gas in his face and he was OUT! Then I ditched the white bunny suit and hooked up with Charlie and grand-pa (blood donor)to wait..there was alot of waiting..refer to the above sentences to see hoe much. There is so much waiting that they give you a vibrating pager just like at Outback Steakhouse...crazy. Back to the waiting...breakfast...waitng...coke...waiting...pee...waiting....coke...more pee....phone call from the operating room....now on Bypass (the worst part)...waiting...coke....phone call #2 from the operating room...Off Bypass (woo hoo!!!)...surgeon now working IN the heart.....eeewwww....wiating.....facebook....waiting....snack.....phone call #3...surgeon on his way to talk to us. Now Charlie and I practically assaulted him coming off the elevator but after so much waiting I wasn't going to wait 1 more second. He said everything went perfectly...just the way he described (now he also described all the shit that could go wrong so I did pause for a minute, but he was smiling so I figured we were good) We were going to head on up to the PICU but Charlie was a little scared, so I went first. Not unusual in our family...I have a MUCH stronger tummy for this stuff, but when I went up to the PICU, well, I got kicked out. Alex wasn't there yet and when he did come up the secret elevator, Dr. Rick threw me out. I guess he remembered me from the last time we were there.

So after pacing out in front of the PICU, Dr. Nitta (love her) came out to get me and in I went and this is what I saw:

1. Alex alive (WOO HOO!!!!!)

2. Alex breathing on ventilator

3. Tubes-lots of them (3 chest tubes)

4. Wires-pacing wires for his pace maker which he no longer needed (WOO FRICKITY HOO!!!)

5. IV's and Central Lines-3 of them

Since this isn't my first time it was no big surprise to see all of that, but the biggest surprise was that they were gonna wake him up and pull that breathing tube. HOLD THE FUCK ON......are you sure....swollen heart...remember the last time....going to vomit...you people better be right cuz if you aren't, there is no where on this earth you can hide....OK wake him up....do it. Did it, done, but now he has this thing taped to his face that is blowing oxygen UP his nose, yelling, crying, (him not me) attempting to rip it off his face. Of course every time he moves he gets pissed because of the chest tubes sticking out of his body from the inside. Charlie arrived at some point but left again due to the "silent cry". Watching your child cry is horrible, but watching your child cry with a tube up his nose and another one down his throat with no sound coming out is INSANE!

So, Alex did great, pissed off, sore, and cranky. Breathing on his own and not sleeping due to chest tubes. Needless to say I was on night time duty. No sleep, minimal pain medication, that's what happens when you have a history of failing extubation, Blue's Clues DVD's over and over AND Bobby. Bobby would be the Cardiology Fellow on duty at night...I remember him from the last time when he was a resident...we are not friends...he's an ass...I'm a bitch...a never the two shall meet. I had his ass paged every hour. If I'm not sleeping and Alex is not sleeping then welcome to the party. My nurse thought it was hysterical. Finally he passed out around 4am or so which means I did also and I got to sleep for about an hour. Why the cafetieria isn't open 24 hours in a hospital I will never understand...I needed caffeine....I needed a Coke...hate coffee...damn lazy hospital cafeteria workers...get to work earlier and open the place up.

Charlie came over for his shift, I took another hour nap and a shower then had to hurry back so Alex could get his Chest tubes out! Luckily for him they also took out the pacing wires and them temperature probe that they had shoved up his behind, not a fan of that. He was alot better after that. The chest tubes were really ticking him off. He felt better, the O2 was turned down so it wasn't like breathing in a wind tunnel and they finally got him a little squishy chair to keep him elevated, he was not cooperating with the whole propped up in bed thing. But still, that night, no damn sleep!!!!

By day 3 Alex had on his leads for the monitor, heart rate, etc, a blood pressure cuff ans his O2 monitor that is a light bulb on a band aid on his finger. he was doing so well that we got to go on a wagon ride around the hospital...OUT OF THE PICU...they never let the PICU kids out...but Dr. Rick said as long as we stayed on the Mattel floors we were cool to go, and go we did! We kept him up all day because I thought he was getting a little backwards....sleep all day...up all night...so not going to work at home. That night...sleep, or as much as you can get in the hospital. I heard my nurse whisper/shouting at the Xray guy.....NO...NO....I don't care....you are not waking that baby up!!! Definitely my kind of girl!

I am not a doctor.....but I should be

Post-cath...woo hoo, Alex did great!  he was pretty funny going in. They gave him some ver-sed...it makes him kind of drunk/high...he was all smiley to me and Charlie but he was still glaring at anyone wearing scrubs.  It was like they were bumming his trip.  He did great in the cath., mostly b/c DR. Dan is the shit in the cath lab...super fast and got it in the vein on the first try, and the anesthesiologist only needed 2 pokes to find a vein that wasn't jacked so HIP HIP HOORAY for them.  After Dr. Dan showed us the pics and the video from the cath...if someone had told me a few years ago that all of those SAT words would start to become my regular vocabulary I would have laughed but I am finding them very helpful in the hospital.  We found out a bunch of stuff that I already knew...but I think it makes Charlie feel better to hear it from the doctor...Alex's pulmonary arteries have grown...alot...they used to be teeny tiny and now they are just a teeny bit smaller than they should be.  Also the "non compacting" left ventricle is pumping better than the last time they looked at it...which I knew because I sit through an echo every month and yes, i do pay attention.  Then we just shot the shit for a few minutes..baseball...blah, blah,,Mike Mussina used to cheat off him at Stanford...WHAT????  Talk about random info.  Then Alex came out of the lab and into recovery.  He still had his little hospital gown on...a little girly...he kept yanking on it..it was definitely in the way. Grandpa (blood donor) had to do the entertaining because Charlie and I had to go meet Dr. BR, heart surgeon, and all around genius (at least that's what we're hoping for.  He was very nice...Charlie likes him, which is a fucking miracle...he is REALLY young for a heart surgery chief guy, but that's what we want...a guy who is gonna be around for awhile cutting into little hearts cuz Alex is no done having surgery yet...a couple more in a few years.  So he's talking....gonna do this...cut that...snip...fold...sew...STOP HIS HEART...whhhhaaattttt?  I'm sorry did you just say stop his heart????  Why yes..yes he did.  Soo  after Charlie finally started to breath again Dr.BR started telling us the risks...bleeding...brain damage...3-5% chance of death...whoa...5%?  His stupid tummy button surgery had a higher chance of death, so I'm still ok on the risks.  Then he tells us that 10 years ago no one would have touched Alex...no surgery...no options....Ebstein's Anomaly = death.  So now I'm gonna focus on the next 10 years....first Thursday (Glenn, Starnes, RA Reduction)...then the Fontan in  a few years...and possibly that's it, or a transplant...but in 10 years...who knows. I'm hoping that if he has to get a transplant it'll be cool...part heart, part ipod...when we drive up to the house he can bang on his chest one time to open the garage door, something useful.  Tomorrow is a resting day...nothing to do except hang out, nap, and eat...all to prepare for Thursday.

CHAPTER 1.....AND MAYBE CHAPTER 2

Ok, we are here...in LA...sunny 80 degrees..actually  a little hotter in the hospital cafeteria.  We are waiting (as usual) for the procedure to be done...it's gonna take a while since it just started. They started with a quick look at the pulmonary artery where his shunt connects and now we are having a full on Left/Right Heart Catheterization....complete with general anesthesia and breathing tube.  So far it's been ok...i haven't had to yell...YET.  I've gotten my way on everything...who the cardiologist is...who is doing the cath.  At some point the surgeon will have to poke his head out of his office like he's a prairie dog and face me...or I'll stalk him till I find him...the other cardiologist have already warned him...damn...i like to surprise them.  Basically we have nothing to do but sit and wait...and wait...and wait...and eat.  The food sucks...pizza tasted like plastic and Charlie had some chicken strips that I think had been cooked yesterday.  Right now I'm just entertaining myself at looking for docs that I know and looking at people who  don't seem to fit in a hospital setting....I would take a pic of this lady's shoes but I'm pretty sure she would notice.  Tyson wants me to carry the computer with me some when I find a doc I can ichat him....he thinks it's funny when someone else gets yelled at that's not him.

Mostly we are just sitting....I'm sure that'll get old really quick...as will listening to my dads jokes...we laugh cuz he's the blood donor.  I already saw Alex's anesthesiologist outside eating lunch, which means she left  him the hands of a Fellow.  I guess that's ok since the hard part...IV, breathing tube was already done...I will be checking up on it.  This morning was disappointing because I was gonna take a pic of the MJ shrine that was out front but someone cleaned it up...his shrine didn't even last a week.  They should have sent Tito to guard it...he's not doing anything anyway.

EMERGENCY ROOM....the place where time stands still

Sooooo we went to the Emergency Room yesterday, and by "we" I mean Alex. His tummy button basically imploded. It was really loose so I checked the water in the balloon ans it was a little low...but just a little....BUT about 2 hours later it was hanging almost completely out of his body. Now if the button comes out and you don't have anything to put back into the hole it will start to close up, you get about 15 minutes before that happens. I checked the water in the balloon again and it was gone. CRAP! I unpacked the emergency button and got ready to change out the button...I hate changing the button...of all the thing that I do to Alex this is one of them that really suck....it doesn't hurt i'm just a big lame dork and the sight of a bunch of gook oozing out of a hole in my kid sort of grosses me out. But, I got the stuff ready...new button, surgical lube, all the stuff. I deflated the balloon and tugged to take out the old and put in the new....nope...try again...tug...yelling baby...tug....screaming baby...tug...mother fucker! The balloon is stuck! Damn! Damn! Damn! I call the Gastro-blah blah doctor...it's Saturday...he's in San Diego. I call the Pediatrician...nice man...his words "what the hell! Take him to the emergency room"

I went to the "new children's emergency room @UMC" part of the new children's hospital that is supposed to open in a year, very clean, very new...haven't seen more than a broken arm or the flu. Because Alex is Alex we are in the system....fragile cardiac status...ha ha ha...fragile mother's mental status. The doc sees us, an Associate Professor, no residents, and after some gentle twisting and maneuvering...he gets the button out. The button had exploded and was inside out....yeah, no way I was getting that out at home. The whole thing took 30 minutes.....then they wanted an X-ray...just to check! 4 HOURS LATER.....we got the x-ray...they had nothing there...they had never seen a tummy button before...they had no idea what to do with a heart kid who could conceivable stroke out at any time they pissed him off. Now we had a resident...idiot...nagged her to death...no we don't want to be admitted....stupid ass....order the X-ray princess...don't think that one's gonna make it as a doctor. Finally we busted out, more to me being horribly annoying than anything else and came home. Alex slept, Tyson slept, Charlie slept.......I packed.

UCLA.....WTF????

I am going to lose my bananas on the folks at UCLA.....I know that to be a doctor you have to be smart....although you can be a "C" student kind of doc....BUT...the people that do the scheduling, coordinating, explaining....are they finding them in a ditch? How can the surgical scheduler not coordinate with the other departments for ALL the tests? Do I live in LA? No...I do not...I live in Tucson, where my cardiologist's office would have coordinated all of this for me if I was doing this here. Stupid UCLA. But, I guess the one good thing is that they are so tortured by the memory of the last time Alex was there that I can get thru the cardiology dept. pretty quick and now...poof...all scheduled. I'm going to have to start pulling a paycheck if I'm going to be doing their jobs. I told Charlie his job is to block the door when I start offing people. He has to block their escape....as I freak out I don't want to be yelling at any ones back as they run out the door...that would be rude. We aren't even there yet and they have already pissed me off. Dr. B (Alex's cardiologist) is probably rolling on the floor laughing at the poor UCLA folks...he knows me...how I get about Alex and his care...hopefully he hasn't called ahead and warned anyone. The biggest problem is that we were supposed to be admitted to the hospital on Monday for all the tests...so much easier when you are inpatient...but noooooo..now it's all gonna be outpatient. Echo on Monday, followed by me stalking certain attending physicians to make sure that they are still in Alex's corner if I need them. Then possibly a sedated MRI or heart catheterization..yuck...with a day of rest on Wednesday and then surgery on Thursday. Going to love comforting a cranky baby after a cath in a hotel. CRAP!

Now...Michael Jackson...it's a sad, sad thing BUT...thank God that Alex's surgery is next Thursday and not today...what a nightmare for the patients. Some jackass pulled the fire alarm...imaging if the fire alarm goes off and your kid is in the middle of heart surgery, or is out of surgery...still on the ventilator...what do you do? Burn would be the answer, I'm assuming. Last time we were there was when Brittney Spear went nuts...paparazzi EVERYWHERE....they used to pop out of the botanical garden path where we would walk to get to the hospital just to see if people were sneaking into see her. Fun! Right now grandpa is there...giving blood for Alex to use during surgery...that whole "same blood type as the father" thing...FALSE. I am A+, so is Charlie...Alex...A-...can you believe it? When did a positive + positive ever equal a negative????

So now I'm counting down...we leave in 2 1/2 days...so prepare for a lot of four letter words and insults about their mothers....UCLA...I wasn't planning on being a bitch...now I'm going to make residents cry...just for fun.