Another Trip to the ER

Getting ready to go to the ER is never easy in our case.  I gotta pack a bag because MOST likely I will be spending the night!  Make sure I have med list, food, etc.  MAKE SURE I EAT THIS TIME.  Yeah.  OH and find someone to watch Tyree and Jett.  James is able to get Jett after school…most likely.  But I am in dire need of someone taking Tyree.  I am NOT going to let him go to a dirty ER waiting room.  So once I find someone for him, I am off to St. Joes to figure out Santana’s coughing and fevers.  He sounds horrible.  I fear they will hear my cough and kick me out though.

Pray for him, pray we find someone for Tyree until James gets Jett at 3!!!!

Reflecting…

The boys and I have been fighting off some junky respiratory stuff.  With that said… I was in bed till a little after 5 pm today.  I didn’t sleep the whole time… kind of hard when your bed is set up in the living room… The time I wasn’t passed out old, gave me a lot of time to think and reflect… sometimes that is not so good.  I was curious to see where Santana was Sept. of ‘07 and Sept. of ‘08 so I went to the sidebar on the right and read up.  2 years ago we we were first introduced to his rough seizures that we STILL do not have under control.  And here we thought he was trying to sit up when he brought his whole body up off the bed.  Boy did we have our blinders on.  It is amazing how oblivious you can be to what is true when you really, really want something.  Too bad that wasn’t what he was doing. =(  2 years ago we got the police reports and were going over them.  We were brought back to THAT day.

A year ago my blog had MUCH more excitement in the tone.  We were getting ready for the BIGGEST fundraiser we ever had with East Valley Sol.  The Fiesta Del Sol brought in the money to go to Florida for Vasodilation therapy.  That was a VERY fun night!!!!  I can’t tell you how excited we were that night.  It was SO fun to have a night out and play some casino games!  The prizes were SO amazing!  Then it reminded me!  OH MY GOODNESS!  That was a year ago and the time is here again… in just 2 weeks!!!!!  We plan on going and supporting the next set of kids they are raising money for. They did so much for us that we wanted to help them for this year.  James and his AMAZING connections got him a autograph Fender Electric Guitar from Alice Cooper.  It was SO awesome!  I have a new respect for those rockers.  Those guitars are MUCH heavier than my Guitar Hero one… hee hee. James also got a framed autographed 8×10 of Alice Cooper.  I wish we could have found more… but The guitar itself with or without the autograph is really sweet!  So needless to say… Go to the website and purchase your tickets and go have an AWESOME night!

Click here to register.

Besides reflecting the last few years I have been doing a TON of praying and bargaining.  I am tired of day in and day out of disappointments.  We need something new from Santana.  Something GOOD and new… no more new seizures, no more fevers, no more new x-rays that show something bad, no more BAD… I just want to scream.  I am sick of his coughing.  I can hardly stand my coughing that tastes all bloody (too much info?)  I can’t imagine what it is like for him.  New.  I need something good and new! I need it so I can get through another day.

Where do I start?

Yesterday was Santana’s 2 most important appointments he has.  First we went to Neurology.  That clinic dreads to see us walk in the door… I am sure of it.  So I tell Dr. Chapman about his seizures.  I wanted to know WHAT is his main seizure?  It is called Tonic Seizures.  These are one of the more difficult seizures to control with Medication.  With that said, he just got put in the Lennox-Gastaut Syndrome.  This is not so promising.  I do know that when I was first looking into stem cells, I talked to a mom whose son had LGS and they went to The Dominican Republic for stem cells and out of 5 seizure types, he only has one left.  But for whatever reason, stem cells did not help Santana.  Well, for 6 months he did.  But stupid me… I decided to push it more and went to NAPA and came back with more seizures.  I guess he wasn’t quite ready.  Don’t get me wrong.. I want to go back to NAPA.  But right now, his health is more important than his body.  So we looked at a chart of meds.  Santana has tried 8 seizure meds and is now on 4 and another one that works seizures secondary.  Basically his neurologist said, what poison should we try now?  So to add to his Phenobarb, Depekote, Klonopin, Traxene, we will be starting Lamictal.  This one will take us WEEKS to get to the first dosing stage.  It has to go slow because it can cause severe rash.  So I am nervous to start this.  So now that we are at the end of the line for his type of seizure drugs, the next option is surgically putting in a Vagus Nerve Stimulater (VNS).  This is like a pace maker that goes in the left chest and it has a cord that wraps around the Vagus nerve and send electric shocks through out the day in intervals which prevents seizures and cuts it down sometimes to 100%.  Over time is the best way to tell how it will help.  it has a magnet that you swipe over the device under his chest if he goes into a big seizure and it will shock or pulse longer to cut the seizure.  This is GREAT.  The down fall is it can hold the vocal cord open and may cause sleep apnea.  Or any other breathing issue which is scary with Nana’s O2 levels anyway.  The biggest worry is him going under for surgery and not being able to come off the vent.  THEN the neurologist had to have a DNR talk with me.  Do you know what that is?  That is right… Do Not Resuscitate.  I honestly don’t know if I can stand with him and watch him flat line and not do a thing about it.  For me, I feel like if God is gonna take him, he will go no matter what… nothing will get him going.  I can tell you one thing… No, I would NOT let him live on a vent.  If it was necessity to do a Trache… I probably would not do that either.  NO MORE STEPS BACKWARDS!  But we are not there now.  I hate to even think about it… let alone talk about it in front of him.  So I guess I am on the fence.  I don’t think it is fair to keep him here. I don’t know.  Big choices to make.  Big HARD life changing choices to make.

So after that breathtaking conversation, I had to walk over to Pulmonology.  While walking over there, his nurse and I were talking about the DNR and it looked like Santana was going into a seizure, BUT… he was just looking up at us!  He was probably like… Don’t talk like I am not right here!!!!  It was kind of cute!  But I felt bad at the same time…

As far as his lungs… same ole stuff.  Still sounds like crap.  Since nothing was helping, she pulled him off the Mucinex and Atarax (anti-histamine).  The nice thing was SHE AGREES WITH ME!  I think he is having some allergy to his milk which I talked to the naturopath about too.  She is going to try and get a blood test order for allergies that would cost $250 out of pocket through the naturopath.  So hopefully we can get it done and figure out what is causing all this foam to come rolling out his mouth and nose.  I do NOT like have no answers when there is an OBVIOUS problem.  One thing she did say would be good for him is the Titanic Rib Surgery (VPTR) .  This would space out his ribs that are squeezing his organs and allow them to grow “normal”.  This will also help the spine… secondary.  This is HUGE.  HUGE HUGE HUGE.  Better than fusing the spine… but this is a BIG DEAL surgery.  So that conversation will come up in a few weeks with his orthopedic surgeon.  Any surgery is MAJOR with him.  Even putting him under for his ear tubes.  So needless to say… we will have a lot of thinking to do and to figure out is it worth it to try and prolong a better quality of life with a chance of hurting him.

To see the spine surgery Photos… here is a link to some examples:

VEPTR 1
VEPTR 2
VEPTR 3

As you can see by the scars… this is some SERIOUS surgery.  Boy do I need to get me some knee pads because I have LOTS of praying to do.

As far as how Santana is doing.  WELL… He made it to school for the first time in a long time!  WOO HOO!  He made it without spiking 105 fever again!  He had an OK day… but the seizures have GOT to stop.  I took a nap when Tyree did today [=D]  so I missed him in speech.  Didn’t do so well today.  7 seizures!!!!  during that time.  They just have to stop.  Some of his newer ones have brought his O2 down to the 60’s%.  The are not any longer but a lot more intense.  It is frustrating. BUT he is doing good with sitting and head control in therapy still.  WOO HOO!  I pray these seizures don’t knock it out again.

I myself is not feeling well… AT ALL.   James just had bronchitis, and I am sure I have it too.  My chest is on fire and I feel like I am coughing up a lung.  Tyree sounds raspy too and he had a 102 temp yesterday… but today… he is all over the place… still has an icky cough but feeling fine.  I probably should have gotten him in.  I didn’t even realize it was FRIDAY already.  Jett is on an anti-biotic too but he sounds icky.  Santana still has a cough.  He does not need ANY respiratory issues.  He has enough.

So as you have read.  We have a TON to chew on.  A lot of prayers are needed now.  We just don’t know what to do next.  But a DNR may be an option if we do have surgery.  Please pray for guidance.   Pray I feel better too! Running this house is hard when you feel like crapola.

Oh… and note that I added links in case you were curious what some of those main points were.   Check em out if you want a better understanding.  They are simple sites to read.

I took the Dare and It took me…

Guess I should not have titled my last one that… I took the dare and I got what I thought.  I had to get up at 2:00 for meds in the night.  I see James had covered him with a little blanket and his skin was cold to the touch.  He was still sleeping.  I crawled back in bed.  Not a few minutes later he started coughing and gagging.  James was on the couch watching TV so he took care of it.  James came and laid down and not a few minutes later Santana started again.  So needless to say I jumped up and as I am suctioning I am smelling Puke or Bile… Same thing I guess.  His heart rate was going crazy, his oxygen was dipping.  So I had to change the oxygen tanks out and get him going on that.  I noticed his eyes rolling around, like the abominable snowman in the old Rudolph movie.  This is what he does often with fevers.  I quick took his temp and he was at 102.  Remember, he was freezing a half hour prior.  So I immediately stripped off his braces and moved the sandbags away from him, got the motrin and cool rags going.  In a half hour he bumped to 105!  It was NUTS!  But I took it again and it was 104.4.  Either way… TOO HOT HOT HOT!

He has had many seizures today… nothing too unusual as far as the amount.  BUT… VERY strong.  Unfortunately he has had 2 today that has knocked his oxygen Level down to the 70’s.  He gets it back up within 20 seconds but those are some serious, damaging seizures.  =(  Luckily we have the 2 doctor appointments we need the most tomorrow, that is Neurology and Pulmonology!  If it wasn’t for those appointments, we may have been in an ER or Urgent care this morning.

Truthfully… I think he is just ditching school.  EVERYDAY there is school.  HE GETS FEVERS?!?!?!  I can’t remember the last time he was in school.  I am thinking with H1N1 going around that maybe it isn’t the place for him to be anyway.  I don’t know.  More decisions to make!

Horse Therapy should be starting up in about 2-4 weeks… IF we ever get out of the 100’s!!!!  We are doing afternoons instead of mornings but it has been so warm still!  URG.  Gotta love Arizona!  We should have moved to Colorado where it snowed a few days ago!!!!

Anyway… Keep Santana in your prayers.  He needs some MAJOR strength.  I worry about this kid.  I couldn’t sleep after those 2 am meds.  Pray for my strength to finish out the day with the kiddos.  We have a Chiropractor appointment at 4 then we are coming home to CHILL for the night!

Dare I Write…

I fear writing good because that is when the storm of bad comes.  So I am going to stand in the rain and believe this is a step FORWARD!  Yesterday was a GREAT day for Mr. Santana.  He did really well in Speech.  One I kinda gave up on for now.  He consistently gagged when putting things in the back of his mouth.  Before he would not.  It is completely normal to have this reflex… go ahead… stick that pen on your desk in your mouth and see what happens.  =)   So YAY!!!!  First comes gag, then comes chew, then comes swallow!!!!!  WOO HOO!

He continues this GREAT day with OT.  He did REALLY well holding his head up in a difficult position.  Not without giving dirty looks of course!  But he did it over a minute a few times!  I have video I will have to post later!  He did so good.  I have been trying to post on here but for some reason I keep getting an HTML error.  So I will get some visuals up as soon as I can. (I just posted the photos… I will rotate the pictures later…. sorry… cock your head to the side!) Oh… she also made some sandbags.  As you can see it helps with alignment.

Another new thing he has been doing that my mom pointed out is, temper tantrums.  Typical 4 year old.  When he doesn’t like something or he is uncomfortable, he starts grunting with his upper junk in his throat really loud and gets his eyebrow all down and mad.  It is the funniest thing.  Yesterday he whined with the OT.  So his personality has

been really showing too.  Along with his vocals.  MUCH more vocal lately!  When we took Jett to the dr. yesterday (ear infection), his nurse was leaving to go to the bathroom and Santana started making noises like he was mad, when she walked back he stopped with like a sigh of relief.  He didn’t want to be left alone.  JUST LIKE JETT.  I love it.  I don’t care how small it is.  In his world… this is HUGE!

Off to the Naturopath this morning!  I need to get on doing these meds like I am supposed to.  I had to confess to him that I hadn’t done it 3 times a day like I was suppose to.  45 minute appointment with Tyree.  PRAY FOR ME!  Pray Tyree is a PERFECT Angel!  THANKS for Checking in and Believing!

Forgiveness

Last night I was reading my devotional by Joyce Meyer. I haven’t read it in a while but this was a good one. It helps clear my mind and hopefully it will help someone else.

Choose to Forgive by Joyce Meyer

“[Now having received the Holy Spirit, and being led and directed by Him] if you forgive the sins of anyone, they are forgiven; if you retain the sins of anyone, they are retained.” – John 20:23

You can make the right decision to forgive and not feel any differently. This is where faith is needed to carry you through. You have done your part and now you are waiting on God. His part is to heal your emotions, to make you feel well and whole. Only God has the power to change your feeling toward the person who hurt you.

Man do I love that!  What  a relief.  I can’t remember who I was recently talking to but I remember telling them.  ”I thought I had forgiven but maybe with the anger rages up inside me once in a while I have not truly forgiven, therefore will be kept from any ounce of healing.”  But now I can know that this is ok to feel this way.  It is amazing how the Holy Spirit uses things in life to remind you of God’s great love and to speak through simple things like this devotion.  Whew… what a relief off my back! =)

Jett and Santana are both home today from school due to a yucky cough.  It shall be a FUN day.  It is hard for a child to know why he has to lay in bed all day.  I am the one who really pays for it!  =)  Santana looks clear in the eyes this morning.  So hopefully he will have a good day despite his seizures he has already had!

Thanks for checking in!!!  God Bless!

The Root of All Evil

Waiting is next to impossible. My earthly mind wants to jump at any oppurtunity to try to help make Santana have a better quality of life. But the reality of it is. There is only one true healer. And sometimes I feel like when I get anxious and search to try the next big thing that I am losing my chance for God to truly do his work in Santana. I just don’t know what is real anymore. I think I am come to the decision that people wanting a lot of money isn’t really out to help him. They are out to help themselves.

In the last few years, we have spent $15K on Hbot (Hyperbaric Oxygen Therapy), $10K on Vasodilation therapy… plus hotel and car rental for 2 weeks, $18K on Stem Cells plus hotel for 3 nights, and $8.5K on Intense Physical Therapy and Tomatis based therapy… plus the cost of 2 week hotel rental. We have spent WELL over $51.5K NOT including car and hotel rental. And this doesn’t amount the price of therapy equipment that insurance will not cover OR the natural meds we have tried… that alone is about $1K. Wow. When I look at that I think Was it worth it? Did it really advance him in anyway? I have to say thank you. Thank you for all the wonderful fundraisers that so many people have pulled together for us to do this. We are VERY blessed we got to try any of this. But, I feel I let the people down who helped raise this money. I feel I made the wrong choices so now I let money dwindle out of our hands in hopes it would help Santana is some way, and it didn’t. If I can redo, I would have bought a wheel chair van, it could save my back from getting so sore all the time. It would be easier on Santana so he is not getting in and out of different chairs. We may go more places because it would be MUCH easier just rolling him up and locking him down. His wheel chair is 80 plus pounds. Getting it up in an SUV is tough, I have to kind of fling it up. Great on the back!

To add to it, I went to a naturopath (however you spell it) because he wanted to see what he can do for Santana. I really liked that he didn’t want to jump in and do everything. He did watch the videos from NAPA and thought it was WAY too much for Santana. Which now that I look at them. It is rough. But he was responsive to his awesome therapist. The Naturopath said his biggest concern was his lungs. Obviously if those are not working… he can’t breath. So we got some stuff to help clear out those lungs. Which is great. I really liked the doctor, I think he knows what he is doing. BUT… it comes back to money. I can’t get him better because it will be expensive. I can’t stick with any of this because of the green. If I don’t stick with this stuff it will never work because it takes time. This may have been another waste of money too…

This could all get better when we get moved in. This double mortgage (rent is a mortgage payment) is killing us. So it is hard to know what to do with him and what is actually worth it. If I could take anything back it would be stem cells and Vasodilation. The Florida trip was my fault. I didn’t follow through Like I was suppose to but he couldn’t have the meds on days he had fevers and we all know what his fevers have been like.

At least his chiropractor TRULY cares about him and cares enough that he does not charge him for the adjustments and cold laser therapy. Not to mention he gets me aligned too. Which… goes away as soon as I load the boys in their carseats. The Verve Chiropractic care has been just amazing.

But the truth of the matter is. It does not matter what I do. That is not what is going to help my boy get better. I can spend all the money I want. If they did Brain transplants and I optd for that… it still doesn’t matter. If God wants him healed he CAN heal him. And if I didn’t do a thing, God can still make him in good and perfect health.

Speaking of Good and perfect health. I don’t think that is the case with Santana. He has a HORRIBLE cough. I would normally not think much of it but Jett has one too, along with a sore throat. So needless to say… they are following in their daddy’s footprints as he had bronchitis last week. As long as I don’t get it cause I need to take care of these boys! So needless to say he is on oxygen at night… and now actually. He is sweating a TON also. Which maybe he can kick his toxins out.

This weekend has been a VERY busy and productive weekend. We got the 2nd pack rat storage unit packed. So we just need to do one load with a big truck and we are done! We stopped by the house yesterday and the paint is done on the outside, tile done, carpet in Tyree and Jetts room done, cabinets done, some lights hung! We just need countertops, roof and plumbing fixtures… and a driveway and yard. But we are SO excited. It is so beautiful! Vineyard homes and all the contractors…I will be putting a list of all the ones who came together and helped as soon as I get it… did a wonderful job! So nice and easy to work with!!!! What a blessing they all have been to our family. My friend did the painting and is getting started on the specialty painting. The characters are drawn out and it looks so cute!!!!! Thanks Howland Painting!

Well, I gotta go get this house ready to show. We are missing church and doing the internet church thing today and watch the message at www.sunvalleycc.com. Can’t take hacking boys. Poor babies! Pray for good and perfect health!!! And for me to make the right decisions when it comes to Santana and not to let my flesh and Worldly things take over and take away my focus on God.

Thanks for the Prayers…

Santana had a GREAT night! We did not go to ER because he was sleeping so peacefully when James got home and it would have been 9pm before I got there. HONESTLY… I did not have the strength or energy to go so late. Selfish huh? But really, he did good.

Yesterday he tried to vomit through his fundo multiple times. Runny diaper 2 times. We survived without the suction machine and he did REALLY good. I went yesterday about noon to get the new piece. But I think he knew better. Oh… but when he did need it, the desperation in his eyes looking at me like save me was very piercing to my gut. But he survived.

Today I am going to hang out and see what happens. I am praying we are on the up and up and can move forward. I swear! Every time I post positive… negative attacks me from ALL directions. I can’t handle it. It throws me into circles. I can’t find my may left or right and I lose all focus in life. I am trying my best. I really am. What I need to try harder with is loving Santana now. And not worry about what is to come… whether it is life or death. Because one thing I know he knows is hi momma. I laid with him yesterday and he melted in me and gazed at me as he drifted off to sleep. That is a mommas boy!

I have been so down I have not touched a thing with packing since Friday. I gotta get on it because we are getting a container delivered tomorrow to load the rest of this house up except some clothes and a mattress. So I have a lot to do.. but with a back that is out and I can only look at the floor since I can’t straighten up. Thank goodness it is Chiropractor day! If you are in need, check out the Verve Wellness Center on Higley and Baseline!

Thanks for praying. We can feel it and hopefully that is why Santana is doing better. Now I need to tie another knot and hold on!

While I’m Waiting…

God… I still wait for you! We need you!!!!!

Listen to the song….

John Waller- While I’m Waiting

I’m waiting
I’m waiting on You, Lord
And I am hopeful
I’m waiting on You, Lord
Though it is painful
But patiently, I will wait

I will move ahead, bold and confident
Takeing every step in obedience
While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I’ll be running the race
Even while I wait

I’m waiting
I’m waiting on You, Lord
And I am peaceful
I’m waiting on You, Lord
Though it’s not easy
But faithfully, I will wait
Yes, I will wait
I will serve You while I’m waiting
I will worship while I’m waiting
I will serve You while I’m waiting
I will worship while I’m waiting
I will serve you while I’m waiting
I will worship while I’m waiting on You, Lord

Heavy Duty Prayers Needed!

Instead of sleeping tonight, I got to sit in the chair by Santana with his 104.8 temperature. And… him vomiting through his Fundo! And the beeps of his machine stating O2 Drops, and Heart rate over 170. Did I mention when he vomits or chokes or gags that I can not do a thing about it? Nope.. NOTHING. at 1:30 am I was suctioning and the machine vibrated right off the table. Didn’t think much of it till I had to jump up again to suction and while it was running… I had no suction to it. The filter had broke when it fell. With a crack in the filter, we loose all the air. I tried for over a half hour with tape, duck tape… EVERYTHING. No luck fixing it. So now, he just sounds like crap and I try to wipe out as much as I can.

You can not tell me that 5 weeks of this HIGH fever and vomiting through that it is JUST because of his ear infection!!!!!! He did SOOOOO good with no oxygen. Why now? I don’t want him to step foot in a hospital because that is where the really icky stuff is that can take him down in a heart beat! I have no clue what to do. I am tired, tired of no answers, I feel sick to my stomach myself, and I hate watching him struggle to breath. I feel so bad…

He just vomited again. Heart rate shot up to 193. I just don’t know anymore…