Photo Diary of Santana’s MRSA infection from Spinal Rods

This is the break down he got at the end of 2011 due to the rod being off the spine and breaking through from the inside out.  Surgery was needed for months… but thanks to Pulmonary… it was put off…

January 25, 2012

This is a rash that was found under the tape after we took off all the gauze after surgery which was 1/13/12.  The rash could be tape allergy, or from poo that may have gotten in there… or…. was it a sign of infection?!   The other 2 look… strange… but clean…

FEBRUARY 1, 2012

Is this getting redder?!  Looks Angry… I better for sure be taking pictures… Did take him to the ER… But they let us go home with no worries.  =/

February 4th, 2012

Yup… this is not looking good.  PUS!  I put money down… MRSA.  I have had MRSA boils… they are pus filled.  It just has to be!!!!  SOMEONE LISTEN!

February 5, 2012

Too me this is getting progressively worst….

February 6, 2012

They cleaned it and put Zeroform on it to keep it clean…

February 7th, 2012

NOT GETTING BETTER…

February 8th, 2012

The surgeon put on a wound vac after seeing what is below… that night we went into the ER with 102.6 fever… FINALLY they will listen to me!

February 17th, 2012

Below is the pictures AFTER surgery.  That’s right.  On February 10th they took him in to see what was going on and do a clean out which is where and when they found a DEEP MRSA infection.  Before we left the hospital… the Peds doc had the nurses change the bandage and to MY HORROR… this is what was underneath… but she called the surgeon and he said it will be fine… we could go home…

February 24, 2012

And to think THOSE above were horrifying… how little did I know how horrifying it could really be!!!!   Below are the pictures when the Surgeon saw it for the first time… he said… YUP!  That is the rod!  Why did he say that… the peds doc on the floor said she THINKS she could see the rod… look at the pic above… IS THERE ANY THINKING ABOU THAT?!

February 25, 2010

Not getting better.  We are on IV antibiotics and heavy duty antibiotics…

February 26, 2012

February 27th, 2012

Went to the Ortho as we have been twice a week and the stitches came out and his back just popped right open!  You can see it is really hallow. I was horrified by this.  Never could I imagine that I could see his spine!

March 3rd, 2012

I took a picture EVERY time we changed the wound vac dressing… but after this pic there will be a HUGE gap  so you can’t see the slow healing… but it is indeed SLOWLY healing…

March 23rd, 2012

Look at all that new tissue!!!!!!

March 19, 2012

March 25, 2012

This is the last picture!  I took this today.  The wound nurse had to do an extra visit because Santana Banana had a HUGE blow out and poop got under the tape and on the foam.  YUCKY!  Tissue is coming up nicely… still don’t see how it will make it over the screw… but we shall see!!!!!    The length is shrinking!!!!  The width continues to stay at 2 cm.  The body is just plan AMAZING!

Thank you for all your prayers… God is slowly weaving all his fibers back together.  I didn’t think he was going to make it out of February… but God tends to surprise us with miracles every once in a while.  =)   We can use some extra prayers coming up.  He is going off IV antibiotics on the 29th… along with the heavy duty oral one… so I am NERVOUS… He will be on Septra for a LONG time so at least something will be in his system.  But is is nerve racking after we think we have saved the rod!!!!

I am so thankful his surgeon took the conservative route to save his rods.  His lungs REALLY needs these rods because without them, his lungs are compromised.  He has been AWESOME through all this!  Thank you Dr. Richard Shindell!!!!!!

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Warning… More graphic than the last post…

We saw the surgeon today. He said if I would have called him back yesterday he would have pulled Santana into surgery this morning and must take the rods out. But when he saw us he left it up to me… Remove the rods rush ditching this terrible infection… Or fight and save this as his rods are now In a really good position. I said…One week! Depends on what his back looks like with the wound vac on for a week will determine if I want to go extreme measures and get rid of the hardware.

Much to my surprise…it was horrifying to see his back as the stitches were removed one by one. As you can see I the picture below… He has a long road to healing. It breaks my heart. Empties my soul. And dehydrates me as I cry my last tear. I want his pain. I have heard him cry more this weekend then I have the last 5 years. It digs deep into the pit of my stomach.

Every movement I make, everything spins. I feel like I a standing still and the world is moving so fast that it is all a blur passing me by. I can’t function. I sit with my mouth dropped open and my Heart shattered at my feet. No Person…let alone a child should endure this.

Warning! Graphic Images

I have gotten so many texts and messages asking about more detail on Santana’s back.  I decided I am going to post a little time line of his back.  If you click on the photo you can see the picture enlarged to see more details.   I decided to post this in case this could help anyone with questions regarding infection in a surgical wound.

Santana has been running a low grade fever all week.  99-100.6 up and down.  He still soars his heart rate to 155ish.  Up and down. Some days for half the day he is perfect.   It doesn’t help he is extra snotty.

I called the Surgeon Saturday because the nurse and I were taken back a bit when we changed the bandage.  It had a lot of pus in it.  It was stretching more too.  The Surgeon said that he had been thinking about him all week and thinks he wants to go in and take the rods out completely and not mess around with this.  MRSA is treatable but a pain in the… well… back … to get rid of it.  This is an UGH feeling after we FINALLY get the rods where they need to be and they are not poking through his back.  So he had me move Santana’s appointment from Weds to Monday.  If it looks doable… he is going to put the wound vac on.  But in my opinion… it needs to be irrigated.  But who am I?  I am just Mom.

I did read a TON of message boards (I JUST LOVE GOOGLE!)  and from what I understand… Taking the hardware out is the best and safest thing.  A lot of parents had a problem with their child getting off the antibiotics and the MRSA starts all over again.  It hides in the metal and as soon as the tissue is done being treated it will spread into it… once again.  So…  Okay… Well.  This stinks.  It will only be Back Surgery #5 since August of 2010.  But MRSA is not something to mess around with.  Another thing I read was Renal failure.  These are HEAVY DUTY Antibiotics.  He gets blood work weekly.  But as we know with Santana… things can change fast.

At this point I have to give it up.  I can’t worry.  I guess God knows what he is doing.  But to be BLUNTLY honest… it is hard to trust Him when Santana lives in Pain and cries out in desperation.  I haven’t lost my faith… no one said you have to trust 100% to have faith.  And any parent would be frustrated with their child who doesn’t make a sound EVER and now always crying.  Why can’t he be laughing!?  Why can’t he be smiling?!  I can’t handle the tears and yelling.  It is shattering my heart! I really need to focus on giving him completely over to God…no matter what happens.

I truly think God has him here cause I would lose it if I lost my baby boy.  I think he is protecting me until I can take my mother bear paws off him and give him completely to God.  I am not sure I believe in a FULL miracle at this point.  But I am not angry at God for not giving him a full life back.  I just think if he were to wake up today his back would cause such issues to live every day life.  I have accepted him the way he is.  But not any worst.  And daily he gets worst.  Why is he slipping from me… but yet still fights so hard?!  I will never know this answer… not in this life… but I know he keeps me together… for the most part.  I love him so!

We are heading out soon to see the surgeon and see where we go from here.  If the rods are removed.  I am not sure what I would do after that.  A Fusion would be the option… but I don’t know when to say ENOUGH IS ENOUGH… JUST KEEP HIM COMFORTABLE!

Whew… Sorry… Through sticks and stones… but it is from the depth of my heart…

Click on images to Enlarge.  (if you are brave… )  To give an idea… The whole open part is 6 inches long.  The widest part open is about an inch.. just under.    Forgot… you can also hear bubbling of the goo.  yuck…

Warning… Graphic Photographs…

I have gotten so many texts and messages asking about more detail on Santana’s back.  I decided I am going to post a little time line of his back.  If you click on the photo you can see the picture enlarged to see more details.   I decided to post this in case this could help anyone with questions regarding infection in a surgical wound.

Santana has been running a low grade fever all week.  99-100.6 up and down.  He still soars his heart rate to 155ish.  Up and down. Some days for half the day he is perfect.   It doesn’t help he is extra snotty.

I called the Surgeon Saturday because the nurse and I were taken back a bit when we changed the bandage.  It had a lot of pus in it.  It was stretching more too.  The Surgeon said that he had been thinking about him all week and thinks he wants to go in and take the rods out completely and not mess around with this.  MRSA is treatable but a pain in the… well… back … to get rid of it.  This is an UGH feeling after we FINALLY get the rods where they need to be and they are not poking through his back.  So he had me move Santana’s appointment from Weds to Monday.  If it looks doable… he is going to put the wound vac on.  But in my opinion… it needs to be irrigated.  But who am I?  I am just Mom.

I did read a TON of message boards (I JUST LOVE GOOGLE!)  and from what I understand… Taking the hardware out is the best and safest thing.  A lot of parents had a problem with their child getting off the antibiotics and the MRSA starts all over again.  It hides in the metal and as soon as the tissue is done being treated it will spread into it… once again.  So…  Okay… Well.  This stinks.  It will only be Back Surgery #5 since August of 2010.  But MRSA is not something to mess around with.  Another thing I read was Renal failure.  These are HEAVY DUTY Antibiotics.  He gets blood work weekly.  But as we know with Santana… things can change fast.

At this point I have to give it up.  I can’t worry.  I guess God knows what he is doing.  But to be BLUNTLY honest… it is hard to trust Him when Santana lives in Pain and cries out in desperation.  I haven’t lost my faith… no one said you have to trust 100% to have faith.  And any parent would be frustrated with their child who doesn’t make a sound EVER and now always crying.  Why can’t he be laughing!?  Why can’t he be smiling?!  I can’t handle the tears and yelling.  It is shattering my heart! I really need to focus on giving him completely over to God…no matter what happens.

I truly think God has him here cause I would lose it if I lost my baby boy.  I think he is protecting me until I can take my mother bear paws off him and give him completely to God.  I am not sure I believe in a FULL miracle at this point.  But I am not angry at God for not giving him a full life back.  I just think if he were to wake up today his back would cause such issues to live every day life.  I have accepted him the way he is.  But not any worst.  And daily he gets worst.  Why is he slipping from me… but yet still fights so hard?!  I will never know this answer… not in this life… but I know he keeps me together… for the most part.  I love him so!

We are heading out soon to see the surgeon and see where we go from here.  If the rods are removed.  I am not sure what I would do after that.  A Fusion would be the option… but I don’t know when to say ENOUGH IS ENOUGH… JUST KEEP HIM COMFORTABLE!

Whew… Sorry… Through sticks and stones… but it is from the depth of my heart…

Click on images to Enlarge.  (if you are brave… )  To give an idea… The whole open part is 6 inches long.  The widest part open is about an inch.. just under.

Lucky Number 7

I am so bad at blogging here but I know I have been given a play by play of what has been going on, on Santana’s Facebook page.

February 1st I went to the ER with Santana because his back from his Jan. 13th surgery was dehiscence.  It was opening and had discharge. at 2:30 am he was released because they could not get a hold of the surgeon.  I kept my appointment for Monday and it stayed the same until that morning.  It opened more.  He was treated with Silverdene and we were to come back Weds.

It was open a bit more but not deep.  Superficial.  And no fever over 100.  So They put a wound Vac on him.  That late after noon on the 8th I got a call from Santana’s home nurse that his HR was 160-170, respiratory rate was 48 (normal 22-26) and fever was 102.4.  I called the  surgeon and he said to head to the hospital he was admitting him.  After 4 hours being admitted through ER we made it in.  He never spiked a high fever but once so they planned on surgery that Friday to see what is going on.

It was almost canceled morning of surgery because his heart rate was down … A LITTLE… and no fevers over night.  But he decided he would look anyway.  So glad he made that call.  He had a DEEP surgical infection.  It came back a few days as MRSA staph.

Treatment for this is at LEAST 6 weeks IV antibiotics.  and then another 6 weeks of oral after that is complete.  He had to go under AGAIN on Monday the 13th.  It was only supposed to be 45 minutes to an hour… they came out 90 minutes later and said they had to start over.

*Gulp*

They tried both Upper extremities.  No luck.  Tried the Right femoral artery.  Nope.  This means they had to go into his Left Femoral Artery.  The Artery and Vein that was sliced in half during an adductor release surgery in 2009.  It is covered in clips.  My heart sank while I waited.  And that means he was under for over 2 hours within 4 days.  I hated the thought of that!   But they finally got it place.

But by Weds. they found he had atelectasis.  (collapsed Lung)  Which is common after being put under anesthesia.  But with prayers going up and lots of treatments with svn meds and easy pap.  He cleared whatever blockage was there and it came back up.  Praise God.  That gave me a heart attack!

We were released Friday the 17th.  They changed the bandage before I left and my mouth dropped to the floor.  When they took it off his back was wide open with Frankenstein stitches (black thread) and I could see his rod.  HIS SPINAL ROD WAS VISIBLE!  I have pictures but I won’t gross out those who can’t handle it.  Cause I knew I could hardly stand it.

So now that we are home.  He is still very uncomfortable.  WHICH I WOULD BE TOO IF MY BACK WAS GAPPED OPEN!  A nurse came and trained me on his IV medication.  I have to do it every 8 hours.  And I am exhausted.  for all three times I have multiple alarms set.  One to get the med out of the fridge.  2. to administer Saline and Med and 3. to flush with Saline and Heparin.  I thought my home nursing would be allowed but they can’t.  I have to change his bandage daily too.  The IV nurse comes only once a week for a blood draw.   WHEW.  This will be a long 6 weeks.  It’s the 11 pm one that kills me.  Take med out at 10:30 administer at 11 flush about 11:20.  Falling asleep between makes me more tired.

But last night we didn’t get a lot of sleep.  Santana was not comfortable.  I gave him Valium, Lortab and Motrin around the clock.  He is sweating a cold sweat non stop.  Moving his hands and feet all over… he never moves… and wimpers.  Praise God he isn’t needing much O2. … except last night he needed 4 liters with his biPap.

Yesterday his 7th birthday was spent in bed.  Drugged and in pain.  My heart aches for him.  I want to take it away.  No child deserves a birthday the way he had one.  I feel helpless and I want to make him feel incredible.  He has fought for life for 5 years.  I don’t know why he is here.  I hate to see him suffer.  But somehow God must think he has a plan for him and all I can do is trust in HIM.   Isn’t 7 supposed to be a lucky number.  I am praying he has a much better year than what we have been through in the last 2 weeks!

I am worn out. Poor James is worn out from dropping the other 2 off anywhere someone will take them.  My sister in law Janet and our neighbor really helped him out with that and we can’t thank them enough.  And to make our homecoming a bit easier my dad took the other two for the weekend till we can get Santana comfortable.  My mom and step dad were here a few days to take the boys too.  With out all the support… we would have been lost.  … then again… I am still lost. :-/

Please continue to pray for Santana. This is only the beginning of his infection.  It is down to the bone and VERY difficult to treat.  Pray we won’t need any more surgery clean outs and that all his tissue will be restored.   Give him strength to keep fighting.  No matter what happens.  God knows what he is doing.  Just gotta keep trusting him.  And those words are difficult during moments like this.

I will post a blog post of pictures soon.  But for now… I have to go deliver some puppies!

Thanks for the prayers and support!

Santana did awesome during the surgery.

The surgeon came out and to assure us the rods were in place….again… He said he picked him up off the table by the rods. That statement is nothing to an orthopedic surgeon….but we all cringed.

Santana looked awesome!!!!! I have a picture right after surgery but I have to get it off my phone to post it. He is on constant bipap so I have not seen all of his pretty face. And now that bipap has tore up his pretty little face with skin breakdown. He was staying 99/100% but today he decided to crash down to 86% with no rhyme or reason. So getting him off may be tough.

Another bad thing is I woke up to people coming in all garbed up. He was tested positive for MRSA. I hope and pray that doesn’t get into his wound.

Please pray for poop. It’s been 12 days. So I was just informed they are taking him off pain killers to Avoid any more constipation. Poor little guy. I am so worried about him.

I did get a visit from a fellow Near Drown Tribe member Shauna. Her son is Christian….you can click his link in the side bar and read about his miracle story. She brought me some yummy goodies and represented for the NDs!!!! It truly made my day!!!

James took the week off work so it is nice that the boys aren’t tossed to whoever during this time. It’s upsetting enough to have mom and brother gone and to be faced with someone different everyday doesn’t help either. We have ate a few times in the cafeteria so we got to go on somewhat of a date.

My mom stayed Saturday night. It was so much fun…like a slumber party. I have pics of that too….on my phone.

I have had to restart this entry twice due to losing connection….so I am gonna stop while I am ahead. Pray we get out of here before he catches anything else!!!!! My family needs to be together.

Fear Not for I am with You…

Fear grips my soul.  Like the night covering the earth in darkness.  The only way to see is a form of light.  The fear that wraps my soul can only gain sight with THE LIGHT.  God’s word.

I have been waking up really early with fear squeezing my lungs and I am gasping for air.  This morning I heard a calming whisper,

“Fear Not, For I am with you.”

It kept playing in my head.  Then my mind would drift to the information I heard at PreOp yesterday. And rapid breathing would start to set in and I hear it again,

“Fear Not, For I am with you.”

I called one of my closest friends yesterday, who knows already I am crazy, and I just splurted out my fear.  And then tried to justify… It’s okay… Jesus worried in the garden of Gethsemane.  He was begging God, his father to take this cup.  But this morning I pondered that statement and compared to my own situation.  The difference is… I am just worried.  I am not taking the time on my knees. It’s one thing to worry and it is another thing to pray your worries to God and call upon his name.

God didn’t promise life wouldn’t be difficult.  Or that we wouldn’t face life changing decisions or that we would just dance through life as if it were Choreographed. Things happen. Courses change.  The ground becomes unsteady.  And while that fear grips your soul and you stumble through the beaten path… Gods finger dangles down waiting for you, like a child, to reach up and grip him so tight to help balance and push away fear.

I didn’t write this for my readers or anyone specific.  These words were laid on my heart this morning.  As if God was reminding me to lean on him.  To BELIEVE.  I wrote it out so I can be reminded of the words that were deeply spoken to me.

Don’t get me wrong.  I still sit here typing and reminding myself to breathe out once in a while.

Santana has been through surgery before.  He has had disaster surgeries before ( like an artery and vein being cut).  But this is his THIRD back surgery in just over a year.  One in a life time is to much.  But 3 for a 6 year old is hard on a little body.  Back surgeries are risky anyway with the spinal cord right there.

Yesterday… after waiting over 2 hours past my appointment time to see the doctor… there was concern and a possibility that surgery may be canceled.  He took one look at his back and the sore is different than the pictures below… I will get a picture and post it today… it looks like it may be infected.  He worries about cutting into him and risking infection into the spine.  I shot back with…

What else can we do?!  It progressively gets worst.  We have been putting antibiotic cream on it and there is ABSOLUTELY no pressure on it.  I don’t understand what else to do. Do we just wait till it comes through his back?!

He said we will go with the surgery but if he gets in there and it is really bad.  He will just take the rods out until it heals.  With that… It brought more…This doesn’t make sense to my mind.  To me…Either way… Going in and fixing or going in and taking them out still risks infection to spread inside.  I would think if he just puts the 2 ends of the rods back on it will be in a different position and not be rubbing from the inside out to cause such a terrible wound.   So I am going into this surgery not knowing if he will have rods or not when he comes out.  I will tell you this.  If those rods come out… I will NOT do another surgery to put them in.  I would try a fusion before that.

The nurse practitioner came in and checked him over and was concerned by the blisters by his diaper. He gets rashes like that often… his pediatrician has stated before that it was MRSA without testing it.  But they come and go so often.  Tyree and I have both had MRSA before.  But these looked like a scratch from a ring or something to begin with… which is a door for Staph to come in.  However… it was flat when she went to check it out… so WHEW… we should be okay.  But I also told her… Okay… If you go scope his lungs… you will find MRSA and all other kinds of bugs in there.  He is a carrier and that is just him.  I can bet money he has had worst during these surgeries.  She looked at me like… yikes.  But when he had his Bronch… he was healthy and doing GREAT and it came back with EVERYTHING under the sun.

So I am faced with fear.  I can’t say… lets wait until his wound gets better.  We have done all the wound care we know how.  and yet, it continues to get worst.  And I can’t imagine what it will look like if we let it go.  And I know that surgeries themselves are not what kills people… it is usually the infection that lingers after.  and that is what does scare me since he is going in with it.

One thing I do know is he is being sent to ICU for recovery and will be left on biPap.  Which leaves TERRIBLE bruising and marks on his face.  I do know that the doctor and I have been through a lot together with Santana’s surgeries and he knows how much I need this kid.  He promised to take good care of him.  But none of this is in his hands.  It’s in the hand of God.  He is the great physician.  He is the healer.  I have to in my mind accept if God choses to take him and Give him away, no matter what happens.  But I still have to believe that God can do miracles.  And I always say.. there is no way God will take him away… I might just fall apart.  But no matter what.  I know that Santana is not mine and I am not  in control and no matter WHAT happens… God knows what he is doing.

Please join me and pray for God to give the doctors wisdom and strength during the surgery.  Surgery time is 7:30 am on Friday the 13th.  I have to check in at 5:30 am … which means.. I have to leave my house at 4:30am.  Oh my!  Then again… the lack of sleep I have been having… It won’t be a problem.  Thank you for your support.  Especially all you special mommys who GET IT.

Off to read God’s word on fear.  So I can repeat them throughout the day… but “Fear not for I am with you…”  Stays running through my mind.

The Verdict is In…

For those following recent posts in Facebook or Twitter…You know that we have been having issues and concerns with Santana’s back.  Our last visit to the ER with Pneumonia showed a little redness where this spot is.  They said like BARELY a stage one pressure ulcer.  It went away a little bit.  But this weekend I flipped Santana over to find this redness and when I touched it I jumped out of my skin cause you can feel the tip of the rod.  Oh wait… Let me rephrase that… I touched that spot to find what feels like the tip of the rod that has been UNATTACHED since last January.

Right under that red spot you can feel the sharp rod. The bump is his spine...

Just to back up a little… Santana got his growing rod put in Last August (2010).  He was just going to need “outpatient” surgery to adjust his rod every 4-6 months.  The VERY next follow up post-op appointment revealed it was not attached on the upper right.  So he was scheduled again after being healed up.  We went after Christmas 2010 and had not only the rod reattached … I guess it’s called a revision… but also the length growing… cause I think Santana wants to be 6′ 3″ like his daddy.  Well… I was concerned about the bandages in his back cause the little blood spot seemed to have been growing.  But the nurses do not touch the surgeons bandages cause he does not want to risk infection.  We had to take him home … me still being in DEEP concern for his back.  Sure enough with in a few days I flipped him over and he was bleeding through everything.  You can see pics and read more about it here. The doctor was not concerned and told me to just change the bandages.  We ended up back in ER cause he was requiring more oxygen.  Needless to say his numbers were at the level of transfusion being needed.  And of course was anemic.  But they did not do the transfusion but instead put a wound vac on and just monitored his numbers.  Whew… Got that out of the way… but then within a month it was off … again.  But was questionably off.  Needless to say… A CT scan revealed it was off. AGAIN.

This is Xray durning Surgery. It is one the spine... I feel like Rachel from Friends looking at her Ultra Sound... I can't see it attached but whatever. You can tell it aligns with the spine.

We have been waiting and waiting to get it fixed.  But pulmonary… a NEW pulmonary doctor didn’t think he could handle it.  He required he got a sleep study.  He wasn’t comfortable that the sleep study revealed him at an average of 94% during the night!  I LAUGHED cause that is good for a daytime average!  So we had to go on biPap.  Not to mention another sleep study… with bipap.  It kept getting delayed due to Pneumonia… and lack of communication to the Pulmonary office.  But FINALLY they said… OK… ONLY if he is on BiPap after surgery.  Yeah yeah… Sure… THANK YOU!

So this sore is what I noticed this weekend and feeling the rod had my tummy turning.  I emailed the pics to a nurse at the clinic and they said… we will squeeze you in tomorrow.  So we did an xray… the doc had me look at it and said… yes we will still have surgery 1/13 and blah blah  blah.. I said.. YES… BUT WHAT ABOUT THE SORE?  He was like… WHat sore?  SO he didn’t know we were there for that.  So he looked… didn’t really feel around… UGH!  but said yes… that is NOT a pressure sore like when the boney areas get sores from laying in a spot… the pressure is coming from the inside out.  Put saran wrap over the tip of the pencil… see the stretch.. yeah.  That is what is happening to his skin.  I asked if it could come through… he says… well yeah.  SOOOOOOOO???????   REALLY?!  This is not like an emergency at this point?!

And this would be his rods... BOTH off on the top... it was just the right side. The one without the clip on the very top is what I believe to be what I feel right under the red spot.

I can wait… just a few more weeks to go.  AH!  It hurts to look at him!  It has me so upset I have been dealing with anxiety attacks.  I don’t do well with broken stuff… and when I feel that rod .. I squeal and cringe.  YOWSAS!

I think the doctor was a little nervous when I told him he is getting surgery Friday the 13th.  After all… He did have an whoops in 08 when his artery and vein got sliced during adductor release.  He knows there is a first for everything from that surgery… I am sure Friday the 13th isn’t the day he wants to work on Santana.  But as from my stand point.  It is just a day and above all… My God is the GREAT PHYSICIAN!  He is in control.  And I pretty much know he will keep him in good hands cause he knows emotionally I will not do good with out my bananas.  God’s Got this!  I trust him.  I just pray that he leads the physician in every move in that OR.  I need my boy to be as comfortable as he can be.

Not only does Santana need lots of prayers… but I do too!  This is a new hospital for us since our WONDERFUL St. Joeseph’s shut down pediatrics.  So you know.. I do not like change.  This is HUGE change for me.  I just want to get through it and bring the family back together again and hope this will be the LAST revision!  Besides… he is WAY over due for a lengthening.  So pray all is well when they get in there and his recovery is quick!

He sends his love and kisses out to all his supporters!  I will post more pictures of him in the next day or so.  THanks for checking in on us!!!!!  God Bless you all!   Below is the video of Post Surgery from the last time…

Where are you Christmas?

I can say over and over again that I am terrible at updating this blog.  But lately I think I have been terrible at a lot of things and this blog is the least of my worries. And in reality.  There isn’t much going on.. with Santana.

But I have gotten some emails looking for updates. And I suppose there are a few.

As most know, his rod has been out of place and unattached for a year now… well… A year come January.  He originally had it put in last August, next x-ray showed it came undone so last December they reattached it.  Unfortunately… the very next x-ray raised concern that it may or may not be undone.  Well, a CT scan showed that yes indeed, it is.

We have been fighting for a surgery so he doesn’t hurt.  Not to mention it freaks all of us and his therapists out cause you can SEE the rod poking his skin.  His curve looks WORST now.  Oh… and this is a GROWING rod that is to be adjusted every 4-6 months… it has been a year now… he has no where to grow so he is getting terrible TERRIBLE rotation.

We got a surgery date August 26th… but 4 days prior… and AFTER we already had a Preop appointment… Pulmonary knocked it down.  Made us do a sleep study.  Didn’t like his average was 94%… WHICH IS AWESOME EVEN IN THE DAY FOR HIM!  … and made us do BiPap and another sleep study.  He of course got Pneumonia so that sleep study was put off while we got his numbers back up.  Needless to say we finished the sleep study and yes he needs bipap and FOR SURE all the time immediately after surgery.  So YAY for clearance!

The set surgery date for December 30th and I was like…. ERRRRRRRRRRRRK (slamming the brakes on).  Ummm… no… This would be my 3rd overnight stay on New Years Eve and my 4th time in the hospital.  No thank you.  So the next date was January 13th.  Friday the 13th… NO WONDER THAT DATE WAS OPEN!  But I don’t believe in bad luck… so I took it.  Now we just have to keep him healthy!  Although I do wish I would have just took the 30th now.  Get it done with. Either date… Pulmonary didn’t think it through… HELLO… Now he is admitted during RSV.  BRILLIANT!  But its not the first time.  He is strong.

More recent news was just the freak out of the school district taking away my home nurses and providing their own.  Santana is not difficult… if you do know him.  So I had a hard time with this and wanted to pull him out of school.  I finally agreed.  But during the training process we find that the district provided nurse can’t lift him do to issues with her back.  I am sure she would have been very capable other wise but it worried the teacher and the therapist and my home nurse too.  So my girls get to go still!  YAY.   I felt bad cause it was nothing personal other than the ability to lift him and a lift will not work in the changing room… and he is only 40 lbs… I think that would be more difficult using the lift every time than just getting him.  And post surgery… he will need to be monitored VERY carefully and my nurses really know him and his numbers.  so WHEW.  after a few weeks that fight is done and over with.

I recently started working.  I love it.  I do.  But chances of them making it is slim.  So if you are in Arizona… PLEASE… EVERYONE GO EAT AT ROCK TACO CANTINA BY THE CHANDLER MALL FOOD COURT!  They have great food and if you drink they have a full bar.  It’s family friendly so yes kids are allowed in there.  The food is SOOOO tasty and I will be bummed if they have to shut the doors.  More for personal reasons since I love their food.  Work is just to get through the days and help pay for Preschool… which Tyree ABSOLUTELY LOVES!  He would be bored without it.  But times are tough and I am trying to help pay but we will see if I even get a paycheck.  :\

It is already December 8th and we have no decorations up.  And I don’t intend to really want to do them.  In 8 more days I will hit 5 years.  5 years of pain, tears, joy, celebration, striving, getting by, heart ache, brokenness, gratefulness, thankfulness, lonliness, love and blessings.  As you can see… it has been a roller coaster of emotions.  I know I have used the phrase… “Stop this world… I want off!”  several times as facebook statuses.  The meaning behind it only says that this is a ride that makes you sick after a while.  You can’t see what is up or down.  But I have to say… I am so proud of my boys.  I am So proud that Santana does try so hard in therapy.  It may be very small things like pushing down on a switch to his paintings that he LOVES to do and they always turn out beautiful.  My amazing therapists have pulled out the best in him.  But props not only to Santana and his willingness to go on… but to Jett and Tyree.  Especially Jett… He has endured so much and have seen more than the eye of any child should ever see.  He does excellent and when it comes to computers and tech stuff… he is a cool dork like his mommy!  Hopefully he stays together enough to make something of it with his talents.  He is beautiful and just goes with the flow of our roller coaster ride.  Then there is Tyree who has no clue that Santana is different.  He loves him to death and always wants to suction him or help make his formula.  He loves his brother and I am thankful that he doesn’t know what different is… yet.

My point of all this is… while there are lots of reasons to celebrate.  There is still a lot of reasons to miss who Santana was.  and I would be lost without the boy he is today and all the chaos of fighting for his rights… but his smile always stays in the back of my mind.  The thoughts of what life would be like if we were a typical family.  My life was flipped completely upside down and I will never know what it is like to raise a typical family and get to just get up for dinner or go on a vacation out of the blue.  This life requires a lot of planning… and if you know me… I am not good at that.  But I think life typical would be rather boring.  So I pick myself up and I do what I can the best I know how.  But man… 5 years have slipped by so fast.  I feel like I aged 10 years.  and This month will always be hard for the rest of my life.  I can make the best of it and continue to celebrate his life on December 16th… but the truth is… It will always be a reminder of the day that tore my life apart.  The day I had to start faking smiles to hide the pain buried so deep.   But I can celebrate the fact that my situation has brought amazing people in my life and scared off the TURDS who didn’t belong there to begin with.  Yeah.. if you think… “is she talking about me?”…. So ANYWAY… I want to thank the people who came into my life BECAUSE of what happened to Santana and has held my hand in the process and loved on him.  Especially you other ND moms… The TRIBE especially.  I love you all.  I thank EVERYONE who has stood by our WHOLE FAMILY (not just half of us).  I love you.

Now I will shuffle through this month and get ready for Surgery which is ALWAYS high risk for Santana.  Please be in prayer to keep him healthy.  He really needs this surgery!  Thanks for the ones who are left checking on the blog.  xoxo

The Life of Uncertainty

It seems as though nothing in this life is certain.

Jobs are not certain. Good health is not certain. Friends are not certain. Some days our faith is not certain.

Nothing on this earth is guaranteed. Not even another breath from your loved one…or yourself.

As I sat at the memorial service of a beloved Pastor from my church.  Pastor Leo Godzich.  I am reminded that it only takes a second and your life is totally changed.

You would think I, of all people, would not need to be reminded.  I live change from a second that could never be changed.  But the thing about it is, we get used to where we are in life.  We just deal.  We survive… Not necessarily live… but we survive.  A drastic change in life becomes all we know and we get comfortable.

But last night was another wake up call that life is short.

Our next breath is not promised.

And as I look over my life and the people in it.  I would hate to know I didn’t tell them all they mean to me or what they have done to pour into my life, before it was too late.  I would hate to leave this earth without showing my gratitude.  Without showing love and compassion.  As Molly, Pastor Leo’s wife, spoke… I want a life of no regrets.  I don’t want to be separated from anyone without them knowing I appreciate everything they do.  I want a marriage like they had.   I want my kids to remember our marriage like the Godzich girls did.  (Their middle daughter Bethany spoke life into marriages at a conference a few years back and as a child begged parents to work it out and remember the kids… it changed my way of thinking when it comes to family… she touched me so deeply that year).

While we never understand why tragedies strike.  Why Santana fell into a pool and was left with severe injuries that cause daily heart ache on the whole family. Or why Pastor Leo was appointed to the van that was not going to make it to their destination, we never will know.  I ponder on… WOW GOD… You healed him from cancer just a year ago.  He saved a multitude of marriages all over the world.  He fought to keep the sanctity of marriage One Man and One Woman.  He wrote the Covenant Marriage Law.  He was a MIGHTY man of God.  He took time from his own family to pray with other families.  … Including ours after the accident.  He stated the facts and all the emotions we would go through.  His conferences changed our life and kept us together. … And now he is gone.  The Santana I knew is gone.  And we can sit and ask why.  I know I still have my meltdowns of missing the Santana I knew and hating to see him suffer.  But in the end.  They are not ours to keep.  They are the vessel of God.  God used Pastor Leo in a GREAT and MIGHTY way.  I still believe that there is SOOOO much work to be done.  But I know his passing has changed THOUSANDS of people.  God somehow is using this.  And I DISLIKE when people would tell me that what happened to Santana is for the good. I would think… HOW COULD GOOD COME FROM THIS?!  But I know that I know someday I will see the big picture. Maybe not in this life.  But I will.  And it struck deep in my heart when they played pieces from his last sermon he preached in Uganda before getting in that van.  He was stressing that the bible says…. “ALL THINGS WORK TOGETHER FOR GOOD” … Wow…

As for God taking Pastor Leo, what we think to be WAY too soon, I know in my heart that his passing has changed my way of thinking.  To be blunt… Marriage is tough.  Everyone goes through a rocky point in their life with or without a special needs child.  But after attending Pastor Leo’s BEAUTIFUL memorial.  I am reminded that life is short.  And it isn’t our life to care for… we need to live it to the fullest and find God’s purpose.  None of us are here on accident.  And after hearing the strength in Molly and their girls last night.  I realize that life is too short to worry about petty things.  I want to make memories that last a lifetime… Not ones that haunt my thoughts.  I want my boys to remember us as one big happy family.  I know that is unrealistic to live out every single day.  But I am going to strive to make the good memories outweigh the bad.  I am going to tell people what they mean to me.  I am going to love my family and husband like it’s our last day.  And the days I don’t have the strength, I hope they have forgiveness for me.

Again nothing on THIS earth is certain.  But one thing is certain is putting your faith in God and dedicating your life to Jesus Christ… Cause if you can do that… Heaven is for Certain!

… I know I have been terrible at Blogging.  I will write about my moms retreat in the days to come.  Please keep the Godzich family in your prayers.  Please pray for their NAME building as they are trying to raise funds before December before the bank takes it away.  Molly has enough to deal with now and this is a stress she doesn’t need.  If you are able, you can send donations to NAME and please pray they raise enough to pay off their building and they can focus on continuing to help and save marriages all over the world!