Praying Me Through

This song was in my head tonight… just when I felt the break down coming… this song started going in my head.  THANK you to whoever just saved me!

Complications. =/

First… BIG HUGE apologies for those who read the twitter update that said BACK TO ST. JOES!!!!!!!!!!!   Didn’t mean to freak ya’all out!  It was Post Op. They made it early… But whatever.  I didn’t not want to go cause we all know what it is like to get appointments in the clinic.  Crazy busy there.

Before

The appointment was not a waste!  Incision looks GREAT!  No ooze or anything!  But the xray showed something NOT SO SETTLING!  The surgeons didn’t look worried… but they are so stinkin’ good with their emotions… not sure I could ever tell anyway… Shoot… It was hard to tell even when he bled out with the artery being cut in 08!  He is calm as could be… but that is what makes a good surgeon with a nice steady hand.  However.. the top of the rod on the left is supposed to be closer to the spine… so it isn’t tied down or something like that.  But the screw below is the main anchor.

Rod on Left is not attached at the top screw. YIKES

I gotta say.  It really worries me that this will poke him or hurt him!  =(  How did this happen?  Why don’t they wanna go in and fix it now before everything heals up… well… the more I thought of that, it is probably REALLY dangerous to put him under again…. and this close in time.  So we wait it out and follow up with x-rays!  Could this kid have any more radiation?!  Holy cow!

Taken at post op... worries me to death... his back doesn't look as good here. =(

See How much straighter this is???? (taken on the 27th)

I gotta give him praise though.  THIS KID IS THE TOUGHEST KID I KNOW!!!!!!!  HE AMAZES ME!  I could just lay and cuddle him ALL DAY LONG!  I love my hero! Although… no nurse tomorrow… if Tyree naps… I will have time to do that!  =)  Thank goodness my one nurse is coming in for 2 hours to do his morning stuff till I get Jett off to school.  I was hoping to do cold laser therapy with him but there is NO way I am going with Tyree and him solo!!!!!!

Speaking of cold laser therapy… what would be AWESOME for his incision to heal would be hyperbaric oxygen treatments.  Just can’t come up with $15o a treatment.  =/  But that would heal that baby up inside and out QUICK!  I really gotta to some fundraising to have an emergency fund for situations like this!!!!

I just pray the rod doesn’t hurt him in anyway.  Just when I thought we were out of the woods and on our way… I live in fear again!!!!  =(

More thank you’s… I feel bad… I know I am missing more.  Thank you to my friend Tami who lives up north yet bugged and bugged to help out!!!!!!  YOU ROCK CHICK!  And to my neighbor Angel for offering to help and watching boys today while we had Post Op!  You guys ROCK!

Surgery Update…

Wow!  I am not sure I will get it all in one post… so much going on but if you have been following the twitter updates, it was all pretty much right there.

Above all I want to give Praise to God for giving Santana the strength to pull through this!  His risk was so high with this chronic lung disease issues. But once again, God’s grace and mercy is new every morning.  (hmmmm…. wish humans were wired that way).

Not that I didn’t have faith or trust in God… but I was scared.  Really… I was.  Tuesday the 17th we were to wait for a call for a bed to become available.  1 pm rolls around and we have had everything by the door and ready to go.  So I called and the pulmonary doctors office forgot to send the paperwork over to admitting.  So a few hours later we get the okay to go to room 18 in the PICU.  (the peds floor was full… which was fine cause he goes to PICU after surgery anyway).

The only rain cloud in the sky rained on us on the way there.  It was so weird to see blue skies… yet rain was on us.  Made me wonder if I was doing the right thing. Especially when the hospital bed wasn’t working out.

He had a major diaper blow out on the way, so I had to change him and when I rolled him back over…. his ear was DRAINING.  No… not a little.   A TON! SERIOUSLY???  INFECTION???   Oh… and did I mention he had to be put on o2!?!?!  This kid is rarely on oxygen.  So i was sweating it and worried they were not going to do it.

Then that Weds, they continued IV antibiotics and breathing treatments Q2.  I had a DNR talk with 2 doctors and a pallative care nurse.  I held that form ALL day Weds. just looking at the options.  Sick to my stomach.  After long conversations, we did a partial DNR.

Surgery morning… Santana had a low grade temp of 99.9!  ARE YOU KIDDING ME?!  AAAAAAH!

Still worried about it and the DNR decision we headed out for surgery early Thursday morning.  But what a relief when we go down to PreOp.  They don’t accept DNRs in an OR.  They want their surgery to be successful so they take EVERYTHING avenue to make sure that patient comes out well!  So I was okay with that. whew.

Waiting for a surgery can be painfully long.  But I had My mom & step-papa, my dad and step-mother, and my cousins wife Crystal hanging out.  My mom went over and got sandwiches at Sacks and we played Phase 10.  And we had laughter!

Santana did awesome!  4 hours of God leading the surgeon and team to a successful surgery!  It is amazing to know that we KNOW God’s hand was right there with him!

We met Santana up in the Picu and to my utter amazement… HE WAS OFF THE VENT!  I was shocked!!!!  He was doing awesome!  It was scary to see him so passed out but he looked great!  Then about an hour later he was waking up and crying.  It was so heartbreaking.  But nothing a little iv push couldn’t help!  AND let me tell you!  He only did pain meds until Saturday morning at 9 am!!!!  So not even a whole 48 hours!  This kid is tough!  I swear!  He was tougher then me!!!!

Ortho was pretty much done with Santana on Tuesday, but pulmonary wanted to keep him until he is better than when he came in.  So she wanted to make sure we had a full 10 days of iv antibiotics and treatments. So we were stuck till Friday!  I had a good chunk of team fighting to help me get out… including insurance saying no more… but we lost…  It’s okay.  we survived.  I just feared him catching some other junk while in there!  But we were all good!

I have BIG thank you’s to some of the AMAZING St. Joes staff.

Dr. Shindell did AWESOME!  I am sure it was tougher than the average case knowing how his easy surgery back in 08 went bad when an artery jumped in the way!  So I knew that Dr. Shindell was going to take extra special care for him!  And his incision looks INCREDIBLE!  HE DID AWESOME!

Dr. Martin… can’t remember if he is a physician’s assistant or a resident.  Was also just awesome!  I met him the first time in Preop but we were very comfortable with him!  He took the time to explain things.  And even more amazing, he brought his son up one late afternoon cause he made a picture of Santana and wanted to meet him!  It melted my heart!  It was so sweet!

The Attending Dr. Parra Roide (not sure on the spelling) was just AMAZING!  What a big heart she has.  Never in my life have I felt like I have connected to a doctor like I did with her.  She took the time to talk to me about a DNR and made me comfortable with my decision.

Her resident Dr. De La Santos (think I chopped that) was an amazing sweet person!  She is going to be an AWESOME caring doctor.  The bed side manners were amazing!These docs have shown me that there are doctors who know the books, yet use judgement from the heart to help also.

Then Behind her, she had a student from Minnesota named AJ.  Now he is going to make an incredible doctor someday!  He is just the sweetest doctor I have ever met and truly cared about Santana’s story.  Not to mention, the last day of his rotation, he came by with an Eeyore beanie baby for Santana.  I thought it was so amazingly awesome!

Thank you Dr. Stewart for helping Dr. Martinez’s patient and caring for him as if he was yours. Thanks for your talk about the DNR also.

And I really hate to name of nurses cause I know I will forget someone. I am so bad at names!  =(  For some reason I remember PICU better than peds every time.  So I will name off what I can remember… Nevermind…. I tried but I cant remember all of them and just can’t hurt him.  As far as RTs.  They were all great too…. We always have much Love for Karen.   She knows how to get that junky junk junk out!

Now…  This surgery would not have happened without other people in my life!  Lorili, my step-mom not only stayed with the boys the week before While I was in Los Angeles, but she helped out a TON while I was in the hospital with Santana for 10 nights!  Thanks for taking time away from your life.  Thanks Dad… I am sure you starved while she was gone.  =/

Mom & Craig… thanks for driving the bike over in the HOT HOT sun to be here for us.  Thanks for taking my boys and spending quality time with them.  I know that I didn’t get to spend much time with you but knowing that my boys were taken care of and getting attention meant so much more. I love you guys and thanks for coming.  I know you guys were super busy with the backpack giveaway at the Dream Center.

Crystal!  Thanks for the snacks and playing games with us during surgery!  AND for going to my house to rescue the boys after school.  =)

Chad and Meredith (my brother and his wife) came last Sunday and hung out for a LONG time playing games and eating!  Thanks for hanging out with me for the day!  I was starting to go crazy!

Thank you Wright family for caring for the boys and bring dinner to them!  Thanks for picking up and taking home Jett!  I really appreciate it!!!!

Janet (my sister in law) Thanks for bringing me Cantina Tacos and snacks!!!  AND GREYS!  I am done with Season one but I still have to finish Season 2 before you get it back.  =)

Big fat THANK YOU to my beautiful niece Brittney!  She came to watch the boys and was so faithful in helping us get Jett to Football practice!  Thanks girl!

Thanks Jen D’Amato for bringing the girls up to see Santana and Chiara’s beautiful picture she made him!  =)

A former home nurse Elyse came up with a teddy bear for Santana.  Thanks for coming and  chatting with me!  Glad you are doing great!

James, Katrine, Diana, and Judy Rescued me with Purple Monsters!  WOO HOO!!!!!  You guys know a way to my heart!

Thanks to James who held down the fort and worked so hard yet came back to our boys craving attention.  You are awesome!!!!

Santana is doing AWESOME!  He cried a bit this morning but is doing good. Keep praying that his recover keeps coming on and that infection stays clear!!!!!

Thank you for all your prayers and support.  I could really feel them cause the night before being admitted, I had an EXTREME panic attack where I could not breathe and my lips were numb and tingley.  I thought I was going to die!  But such a calm came over me in the hospital.  You guys rock, Jesus is my rock and we ROLLED right through that bad boy!  WOO HOO!

SURGERY!!!!

Nothing like waiting until the last minute to update life.

But I waited too long.

I have sat at this keyboard for a good 10 minutes… just numb.  My fingers can’t type the things my heart has to say.

I have been the best I have been in a long time and this life has not brought me down.

But those shattered pieces of my heart that were bonded back together are starting to crack again. I can feel the pressure pulling down on every tiny piece.

Surgery is this Thursday.  This Thursday he will be put on a vent for a four hour growing rod surgery. 4  hours face down.

Maybe fear would not have settled in if I didn’t have to live through the last horrific surgery.  Remember?  The outpatient adductor release surgery?  The one that will only take 1 hour and 20 minutes and ended up being 4 and a half hours?!  The one that almost made him bleed to his last breath?  THE SIMPLE outpatient surgery that put Santana right back in ICU.

This surgery is supposed to be “easy” according to the doctor.  But when your child is at risk when being put under anesthesia, nothing seems easy.  Shoot… even from his bronchoscopy it took him 2 hours to wake up.  =(

Obviously I am feeling anxiety tonight.  I can’t focus.  I can’t pack.  I can’t do anything.  I have NO nurse in the morning and I was hoping to send him to school while we waited for the admission call.  As soon as his bed is ready, we are headed up to the hospital for iv antibiotic and heavy duty breathing treatments. So I shall sit in the 4 white walls in complete fear for the next 2 days.

Santana’s surgery is at 7:30 am.  Thursday.  Maybe I should bring the surgeon some Starbucks?  Eeeekkk… maybe a jittery hand is not such a good idea.

I am stressed beyond stressed.  Today I drove James around to chiropractors and to 2 MRI places.  He has a bulging disk or something like that.  He can’t move… AT ALL without being drugged.  I hate not being able to help someone in pain.  I hate feeling useless.

And that is my problem with Santana.  I can’t help him.  I have tried it all.  I pray and pray this will help relieve the pain and crying he does.  But most of all improves his lung function.

I am worn out… I need some sleep… I have 3 kids to get ready and have to figure out who can help me next week get Jett off to school… practice, and what not… AAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHH!

I am too tired to finish. nighty night.

Ticked Off!

So Thursday we went to ER and made it out of their with no stay!  WOO HOO!  Santana was VERY lethargic for 3 days.  YIKES!  Not to mention ever since last Saturday he had a terrible cough!  So needless to say I have been a bit worried.  X-rays showed nothing.  So they are treating it like upper resp. infection.  I was kinda mad cause I do NOT want them to take this illness lightly… we have 2 weeks (now less) until surgery!!!!  I can’t chance this!  So I did call Pulmonology and she is going to admit him on Aug. 17th to start IV antibiotics and heavy duty breathing treatments! Below is my Vlog video I uploaded from my phone on the way to the hospital…

And this video is just a caption of the yesterday.  For those that can’t watch youtube videos, I do talk about taking Santana to the AMAZING RYAN HOUSE next week!!!  Why?  Cause I am going to California to see my mom and meet my Grandmother from Iowa there!!!!!   AND I AM GOING SOLO!!!!!!!!  My step-mom is coming for Tyree but the nurses could not work Tues. so I have to take him to the Ryan House.  I say it like a bad thing but it is a GREAT thing for Santana!!!!!!!!!  He had so much fun last time!!!!  I am going to hitch a ride with my brother on Monday.  They are coming back Weds. night but I may fly back Friday cause they are doing outreaches on Thursday.  I miss giving back to the community!

Santana is doing MUCH MUCH MUCH better!!!!   WHEW!  I was scared for a minute.  He just needs extra treatments and suctioning and we should be good to go.  I didn’t like the lethargic from the neuro stand point.  But the cough was bad to… no fever though.  It didn’t worry me as much… other than what IT COULD turn into without treatment.

Thanks for all the support!!!! PS… I am not really ticked off… It is cause of my Vlog I titled it that. =)

Breathe

As I have been writing on Santana’s facebook group page, Santana is fighting off something.  He missed school yesterday but went today.  No fever.  But TONS of coughing and junky junk junk!  we have like 16 days till surgery.  He has to be over this!  Without a doubt he must be over it by next week… You’ll see.

We are trying a new hypo-allgergenic food for him.  We have been working with Dr. Compton and he wanted to see him on a better meal plan… as these can foods are full of junk and fillers.  So we got him neo-cate (since we can’t afford his $120 formula at the time).  It is ok.. other than the first ingredient at over 50% is Corn Syrup… WHY???  So we do have the vitamix… THANK YOU COSTCO AND YOUR AMAZING DISCOUNT!  But I don’t know the first thing about making food.  And really… I don’t want to mess with it before surgery.

Jett started football… for the next 2 weeks it is 5 days a week from 6-8.  MIND YOU… he is also in school.  And I have to load the crew to take him.  I am beat.  But after 2 weeks it goes to just twice a week then he will have games every saturday too.

Santana’s Neuro-chiropractor sent us home with these therapy eye glasses.  WAY TOTALLY COOL!  Let me tell you!  His eyes were so alert afterwards!  He was looking right at me as we fell asleep for a long late Sunday afternoon nap.  This doctor has really woke some stuff up.  It is amazing!  And we have been seizure free since APRIL 14th!!!  WOO HOO!  Dr. Compton is also offering intensive programs too. This is good for those who are coming out of state.  He has 2, 3, and 4 weeks programs.  I LOVE what he is doing for Santana.  He is absolutely WONDERFUL!  (PSSSST… Susan.. if you are reading this… You are missed at the office!!!!!  It needs you!)

In the midst of the craziness… I also decided now is the time to get rid of what stress put on me… extra weight.  So I am working hard to get my life back cause Now that I am over this… not forever I am sure… I can move on and take back what the enemy stole!  So I figured… If I am posting it… I am more likely to keep at it… cause I don’t want you to see me fail.  =)

Anyways… I better enjoy a few min. of peace while the babies are sleeping before football practice.

A song I heard on iTunes today… LOVE IT!  Kinda hits home…

Ryan Star - Breathe

She is fine, most of the time
She takes her days with a smile
Moves like a dancer in light
Spinning around to the sounds
But sometimes she falls down

CHORUS:
Breathe, just breathe
Take the world off your shoulders
And put it on me
Breathe, just breathe
Let the life that you live
Be all that you need

She likes New York at night
She dreams of running away
Shine on, bright like the sun
When even the sky turns grey

I need you to hear me say
I need you to hear me say

CHORUS:
Breathe, just breathe
Take the world off your shoulders
And put it on me
Breathe, just breathe
Let the life that you live
Be all that you need

Let go of the fear
Let go of the time
Let go of the ones
Who try to put you down
You’re gonna be fine
Don’t hold it inside
If you hurt right now
Then let it all come out

CHORUS:
Breathe, just breathe
Take the world off your shoulders
And put it on me

Breathe, just breathe
Let the life that you live
Be all that you need

Breathe, just breathe
Take the world off your shoulders
And put it on me

Breathe, just breathe
Let the life that you live
Be all that you need

Let go of the fear
Let go of the time
Let the life that you live
Be all that you need

Let go of the fear
Let go of the time
Take the world off your shoulders
And put it on me

My Dirty Little Secret

No Vlog Today… This is just TOO hot to handle!

Let’s try this again…

PLEASE DO NOT REMOVE MY AUDIO!!!!!!!!

Just How Do I Do It?!

I posted this video to youtube… but they took out the audio… I think it works embedded if you stay here and watch it… but for sure on the youtube site it is SILENT. Which I did record this silent… The music just nicely laid over the top. you would think I was listening to it as I recorded… Nope
So if you can’t hear sound… use the one below the youtube version…

Oh… and let load a minute before playing… this will prevent it from skipping.