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.

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.

UCLA Round 1

I feel like I should let people know about the 1st time we were at UCLA...Mattel Children's Hospital.  We were transferred there by a tiny plane with Alex sedated in an incubator.  It was sort of like a flying hospital room...but louder...and scarier.  When we arrived at the hospital I lost my shit...big time!  I had been in Phx. Children's with my private  ICU room and lots of calm wonderful nurses.  What I walked into was a nightmare.  An "open ward"  with nothing but curtains between  the beds...so loud...and dark.  The lady in the 1st bed was sort of chanting and crying...she was a woman on the edge.  They put Alex in a regular hospital bed...not an isolette..or a rubbermaid as we called them...he looked so little...he was little, only 1 month old.  There were people EVERYWHERE...fellows, and residents and no "real" doctors.....sucked.  I was so upset that the transport crew from AZ didn't know what to do...they didn't want to leave me there.  BUT, we stayed....for 4 months.  The first week they tried to get Alex off the ventilator.....nope.  Then they did a heart cath. where Dr. Dan (nice guy, funny as hell) came and said they wanted to operate the next day...nice notice...so they did.  A right Atrial Reduction with a banded BT shunt (from 3.5 to 2.5 mm)really small.  Then they did the whole vent thing again...and they pulled the tube.  At 2:00 in the morning I got the call from Dr. Lee...have to re-intubate...not going to make it without the tube....are you fucking kidding me??!!  So we waited and weaned the vent and this and that...THEN we had a meeting, an ugly meeting.  Charlie was the muscle, my dad had the door guarded do no one could leave and I had pages and pages of questions and a tape recorder...it was on!!  By the end a plan was in place...Dr. Shannon, the most brilliant cardiologist in the world, stepped up and said he would be in charge of the plan and that everyone would answer to him.  No changes without him knowing.....so we tried...got him to grow...got his heart to stop beating 200 times a minute, and he was a little less blue.  BUT, we still had the ventilator...and out came the TRACH fairies.  All the docs and the nurses touting the wonderfulness of cutting a hole in my child's throat..."babies need their mouths" was the quote of the damn day...they would gang up on Charlie at night when I wasn't there and get him to talk to me about it.  I responded with a very loud HELL NO!  Finally there was an PICU attending...Dr. Balut....I love her...she is my most favorite person in the whole universe because she came up with a plan that finally worked.  After a week of weaning the Vent her way...and some scary tests...he came off...out came the tube...and it has stayed out.  We were discharged on March 14th...Alex felt the sun for the 1st time and I vowed I would never go back there....but I am...there is really no other choice.  Other stuff happened...I can still see Dr. Shannon running down the hall on discharge day..."What room is he in...they're going to re-intubate" and other docs not thinking he would be OK if he went home.  He did come home...he has not been in the hospital for any kind of emergency...tummy button for feeding but totally in/out thing.  He is stronger, bigger, fatter......behind physically....vocally......but dammit he's alive and thriving and I'm trying to prepare myself to go and fight again.

PHX CHILDREN'S

So I've decided to gloss over Phx Children's a little bit.  Here's the basics:  we arrived at about 2am after the worst drive in history and they promptly gave me enough paperwork to keep me busy for 6 years...were they kidding????  We were led to the NICU where there were about 10 people crowding around him and they all started talking about who knows what with giant medical words.  They put us in the new moms nursing room and we slept for 3 hours and then we went to war.  The noises of the monitors was horrible and if anyone cares to remember I had held Alex for about 10 minutes after he was born...so I was a mess.  Then they took him to the Cath lab where they jammed a balloon thru the center wall of his heart to help the blood move across his heart.  Then 5 days later they operated....BT shunt...still on ventilator...then the vent came out!  Woo Hoo!!!  BUT THEN....the vent was back..he failed...he couldn't breathe on his own...why?  They said he wasn't strong enough yet, give him some time, to rest...to heal.  Then a week later the greatest day was when the pulled the ventilator...and it was out...he was breathing...day 1..day 2....day 5.....3:30 am he went into respiratory distress and the ventilator was back.  They didn't have an answer, no real reasons...the solution....UCLA, transfer via the smallest plane in the universe for a transplant evaluation.....damn.

Let's get everyone up to speed......

Alexander Montoyo (no middle name), October 17, 2007, 6 pounds  12 oz...18 1/2 inches long....he was born in about 7 minutes...really...I'm good like that.  He was totally normal, yelling his head off just like every other little one except for the fact that his hands and feet were bright purple.  Of course I had no idea....I was laughing over the fact that i had a baby in 7 minutes and Charlie was in the Wendy's drive thru with Tyson.  so they wrapped him up like a little football and gave him to me...he was cute, in that just born way...smooshed nose...cone head. They moved me to a triage room because it was a busy day for babies being born at TMC in Tucson.  Everyone came and hung out.....my mom, dad...Charlie and Tyson got back from lunch in time to meet the new baby...and Alex has a bottle of Enfamil which he wolfed down with astonishing speed.  We hung there for an hour...until my room was ready....and we went to the nursery...for a bath...and a hearing test........they never brought him back.

I did not have a private room which totally sucked but I had already had Alex so I figured that I'd only be there overnight so I was prepared to suck it up.  The lady behind the curtain had her baby with her and we could hear the little noises, but an hour later WE still had no baby.  Then there were people....random nurses, NICU nurses, my doctor...and a Cardiologist...Dr. Blair.  he came in and said that he thought Alex had Ebstein's Anomaly, he wasn't sure, it's not common, he was going to do more tests...not the worst he's seen....it'll all be ok....Alex will be fine.....Alex was in an oxygen tent....Alex stopped breathing....Alex was on a ventilator. Good job Doc...way to diagnose! There was other stuff...a vein that a baby has that closes in a few days...it lets them breath like fish when they're in the womb.....need it now....Nitric Oxcide....don't have it....UMC's nicu is closed.....oh shit, call the helicopter.....Alex is going to Phoenix.  Now it should be said that at some point we were in such shock and had no clue about what any of this was that I sent Charlie to Outback Steakhouse for carry out, somehow swung a private room....AND.....I had been escorted out of the NICU for calling the cardiologist a "damn liar".  Needless to say I discharged myself, Charlie got gas and a cup of coffee at Circle K and we drove the 2 hours up to PCH...Phoenix Children's Hospital.

There was random stuff...hearing the helicopter take off.....getting stuck in the bathroom at a 24 hours at McDonalds...I did have a baby...I had to pee...I got stuck on the toilet...not a pretty picture.  Charlie was drinking Red Bull or something with the coffee...not in the same cup...but I remember thinking that he was gonna puke.  I felt every bump on the highway, and  let me say that Arizona has some shit roads...so if anyone knows John McCain, tell him to stop bitching about Obama and fix the damn streets!