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.

Grocery stores are for buying food....

I went to Fry's today....when I got there I had no idea why I was there or how I even got there.  I sort of wandered around like I was having an out of body experience.  I knew that I had to go to the pharmacy but after that ....not a damn thing.  I didn't really remember driving there.  I went to Home Depot, my mom had come over so I could that, but why was I roaming around a Fry's?  Let me be perfectly clear......there is no food in my house.  Tyson hardly eats..he is very specific so I always have his stuff on hand and Alex has special food that comes in the mail once a month.  Soooo besides an unending supply of Pepsi Max there is nothing to eat..out of bread, milk, cheese, crackers, apples....EVERYTHING....but I still had no clue why I was at the store.  So what did I do...I bought shampoo.  Seemed like a good idea.

I've noticed that a lot of my day is starting to be like that...I'm not sure where I am for a moment or how I got there.  It's like going to work and not remembering driving...thank God the car knows the way.  I've ruled out all the major possibilities...brain tumor...alzheimers....so either I'm really starting to go a little crazy or it's the stress and the lack of sleep.  Not a good feeling before going off to surgery...the shit could hit the fan you know...surgery fails....they decide to list him...transplant...and the psychiatric evaluation that goes along with it.  Great timing for me to turn into bald Britney Spears.

The worst part is that everything bothers me....I get confused in the store, the TV volume put me on edge and any music just about makes me want to put a pencil in my eye.  I feel like Tyson is yelling, that his volume control button is on HIGH and that even Alex is very loud.  The neighborhood dogs...ugh...yap yap yap, and the damn kids...it's too loud.  But the quiet is worse..I think too much and none of my thoughts are good.  I am the queen of "half empty", all those positive, secure, happy people can just bite me.  I'm not in the mood.  I just want to sleep...for a while.  I want all of this to be over.  I want Alex to progress both internally and externally.  I want him to be normal and he's not...and he's not going to be.  This isn't what I signed up for when I married a baseball guy.  I was going to have  a fun life...with my 2 little boys in their matching jerseys waving at daddy on the field....not this...this is a disaster.  I'm the one who waves...wave at my husband as he leaves for spring training....wave at Tyson as he goes in to school....wave at Alex as they wheel him away into surgery.....it makes my hand hurt.

My kid looks like a pool floaty....

I bought a little pool for the backyard...it's only 1000 degrees in Arizona so what the hell, right?  It's pretty cute, a turtle, with a little canopy for shade.  I also bought a bigger one for Tyson, no turtle or canopy, but still ok for a backyard.  It was actually pretty selfish of me.  I am sooo white, my body is crying out for the sun..."tan me...tan me".  I figured that they might cooperate with me on this.  Tyson could play, pretend to be a fish and Alex...well he could sit in some water and splash around  a bit.  Good plan, except for one small thing...oh two things actually.  1.  Alex is not mobile.  If you want him to sit, you have to put him in a sitting position.  He can roll but can't crawl and hates to be on his tummy at all, because of his wonderful button.  2.  He hates to have his feet wet...weird, yes, but true.  I think it's because of the IV's and the pulse ox (oxygen saturation monitor)  that was permanently stuck to his feet.  It has this little red light which blinks.  What they didn't mention was that the little light burns the shit out of little baby skin.  They were always moving to avoid burns but it didn't always help...toes, instep, little blisters everywhere.  OH and 3. (I know i said 2 but obviously i lied)  He has medication that says "NO SUN EXPOSURE".  So what did I do?  I lubed him up with SPF 500 and stuck him in this little pool...sitting...confused...and pissed off so I could have a few minutes of sun.  Didn't really work out.  I think he was in there for 3 minutes then we both got in the bigger pool with Tyson (so white trash...I know).  He liked that better but he was slippery and kept leaning back to try and get his feet out of the water.  He wasn't exactly happy with Tyson splashing around either.  He definitely was not grasping the concept.  

I've always said that his tummy button (not his BELLY button) made him look like a blow up doll.  It looks just like the damn button that I blew the pools up with.  But in his little swim suit it was worse.  You do sit there and say "holy shit...there is a hole in the baby"  and it is not normal.  Stupid button...they break...they have to be well cared for....and they are the only place that your child is going to get any nutrition.  I hate it.  I hate all the moments that I see other kids...babies or toddlers, smearing spaghetti O's all over because that is not my kid.  My kid eats thru his stomach.  His food comes in the mail.  He didn't smoosh cake on his first birthday, there were no funny, horrified faces of him eating yams or some other baby food.  It sucks.  I hate it.  I really hope he has a breakthrough...physically, orally...something.  We know that his brain works...you can see his frustration.  Hopefully when he gets older I'll be able to talk him thru it...but for now...I have an inflatable pool floaty for a child.