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!