Appointment Update…

Well. It is always fun to hear there is nothing we an really do for your child. He obviously has infection with stinky yellow slime coming up. So ANTI-BIOTIC time! We are doing 5 days on 5 days off 5 days on of Zithromax. We increased the robinul to 4 times a day. We will see if this helps at all. My nurse asked a VERY interesting question. Would he ever be able to have a lung transplant. To get rid of these messed up yucky diseased lungs. Nope. Why? You guessed it! Because of his neurological issues. Is that not fine and dandy?!?!?!?! I don’t care… I would have never thought of a transplant. It is just the answer we get everywhere. No one sees him worth fixing. =(

We got a hold of his GI doctor today and we are to start his med carafate back up for the GI bleed. Anything continues we are to call them. So no other word on that.

Santana has been having increased seizures. Oddly enough in the dead of the night. Which usually doesn’t happen. He must be awake more at night.

Time to get ready to take Santana to get an anti-biotic shot at his Peds. Then off to my GI appt. So much to do and so little time! Tomorrow I will be going with Jett to his field trip. Aaaaaaah. Stressin! But I can’t wait to do that. He deserves some mommy time for sure!

Thanks for checking in on us! Pray these lungs stay clear so that we do not have a trip to the oasis… I mean, the hospital…

Interesting Story…

I believe that Santana is “Locked in” – Pause the bear below on the right to stop the music…

Yellow Means Slow Down!

He will make a cute Neuro-surgeon someday!

I thought my day was off to a good start.  Headed to the store to get some stuff for Thursday and it was like winning the lotto.  I got a 20.81 lbs Turkey for UNDER $7!  WOO HOO!  THANK YOU JESUS!  That was exciting.  I galloped to my car as if I saw color tv for the first time.  But then… I was struck down.  Really… Why can’t I get on here and report some good PTL moments for Santana?  There was a few texts from my nurse.  Sats can’t get above 85%. Thick Yellow pudding like substance coming out.  Too thick to suction.  Blood out of Gtube… AGAIN.  Not as bad… but went through 3 material things. Oh my sweet sweet Santana. He just doesn’t get a break long enough to recover.  Yellow go away!  That is generally an infection!

Passed out before Surgery

Last night when I walked in to do his 2 am meds, he jumped and went into a seizure.  He was awake and not expecting anyone to walk by.  I tried to go back to bed but I hurt so bad for him.  I got up and laid with him for an hour until I knew he went back to sleep.  Poor baby.  I love and miss him so much.  I hate, HATE… yeah I said it.  to see him suffer.

Weird rash after surgery

Ironically he already had a pulmonology appt. set up today.  Pray that they can figure out what is going on… WITHOUT  admitting him!  Please.  Gotta run to take him.  Extra prayers!  This makes my heart so heavy.  I just want to be able to pop on here and surprise you all with GOOD news…  Really… I DO!

Laid up for 4 days now!

Santana did great for his ear tube surgery.  Doctor was out in 10 minutes and they came and got us in another 25.  Much faster recovery than 2007.  I was scared that day.  We waited an hour and a half… at least.  The new Cardon’s Childrens hospital is ABSOLUTELY beautiful!  I am taking him there for any future emergencies.  Closer to home and after the last experience of going to St. Joe’s.  I am not sure I want to go there again…

After we got home from the hospital, I thought I was really tired as I was up at 3:30 am getting him ready to go.  After James left for work I laid down with my alarm set to get up for horse therapy at 12:45. I got up but wasn’t feeling too well.  Just thought I was super tired.  I managed to walk around for therapy and it was like all of the sudden when I got home.  I had shivers, shaking, weak clammy.  My nurse didn’t see me the rest of the day. I had Tyree down the street at a babysitters and I crashed again. I had no choice, I could not move.  Jett who is AN AMAZING 7 year old knew I was sick and went and picked him up at 4:30.  I called the home phone just after 5 to tell Jett to get the paper work from the nurse to sign. Just then, I heard James come home.  Whew.  I texted him earlier and he actually believed me when I said I can NOT take care of these kids and that I needed him… normally he doesn’t get home until after 7.  I ran a fever the whole night. 102.7.  I never felt so sick in my life.  Oh… and it was really fun trying to do meds that night.  It would have been nice if someone could have done them… but whatever.  I was doubled in pain all night.  James dropped Tyree off at the daycare even though he doesn’t go on Fridays and took me to the ER. I didn’t want to go. I just figured it was the flu or stomach bug… no big deal… it will pass.

By the looks of me the doctor said don’t feel bad it’s not h1n1… I didn’t feel bad… trust me.  Then he said… what you have can be more severe when you are this dehydrated.  People die from this stuff more than H1N1.  He thought it was a stomach bug but didn’t want to rule out anything else.  I am in the ER.. why not test.  They did an ultrasound to make sure my spleen and gull bladder was ok.  They were.  Then when he pushed on the right side of my stomach I was VERY tender.  Owe.  So he thought appendicitis.  I had to drink 2 water bottles that had dye in it.  That was hard since I hadn’t drank anything 24 hours.  I did it and they found that I had Colitis.  I have never been diagnosed with something that has caused so much pain.  Well… other than the diagnosis and prognosis of my Santana… but you know…   It feels like post c-section.  Really. I felt like I couldn’t stand up.  But I was given 2 things of morphine and stuff for nausea  and 2 iv antibiotics and 2 bags of fluids.  Sent home on vicadin, anti nausea, and 2 heavy duty anti-biotics.

Now… the search for a GI doctor continues… this time for myself.  I have a follow up on Tues. to find out what great restrictions in eating I have to endure.  Forget restrictions on Thanksgiving.  No way!  I will look at it as weight loss if I have a reaction… with a lot of pain, of course.  =)

Santana was running a fever yesterday morning and has been spitting out yucky yellow crap.  Yummy.  But he has a pulmonologist appt. tomorrow.  We can get to the bottom of this.. HOPEFULLY without a trip to the ER!  =)

I gotta go lay back down… still weak.  Ugh! So MUCH TO DO!

Help needed!!!!

We need Muscles and a trailer!  We have fencing materials and a plastic shed (heavy) we need to get moved.  Oh… and 2 pallets of cement mix. ASAP… Tonight would be great but since short notice maybe plan for Weds night.  Please help.

Also.. anyone know anyone in the trade of electrician?  I HAVE to have vanity lights.  A man must have built this house… I can’t see anything when doing my makeup.

Also looking for someone that can build a fence so I don’t have to keep getting rid of my lovely dogs!

We will pay!  Our builder ran out of money from our loan and is done here.

We have had to pay out the driveway and to smooth the land out.  We just need to lay seed down now.  We have to get this finish.  I can’t stand the dirt flowing into the house. This is financially stressing us out and is taking away from Santana’s therapies or possibilities of stem cells again.

Also… WHo builds a house with no phone plugs?!?!  I have 1 in my office but I need that for internet and fax.  I am too crowded in here for a phone too.  So if anyone knows someone that can do that I would really appreciate it!

I just want trusted people or places recommended.  THanks guys.

Mainly… need help getting this stuff moved. PLEASE HELP!!!!!

Here I go again!

As you may have read on Twitter, Saturday night Santana decided to  spike a 104.5 fever.  Along with that, vomit.  But he seems to be doing better, other than junky and low grade fever. Thanks for the prayers!  He gets ear tube surgery tomorrow.  We can not have a sicky for that!  We check in at 5:30 AM!  Holy cow!  I don’t like anything before 7 am.

So let me start with this.  When I was at my neighbors bon fire last week, I met her dad.  Her dad who so happens to be a neurological chiropractor!  He was asking lots of questions about Santana.  Then told me of some awesome stories that have gone through that office.  WOW.  I was amazed.  Of course, Santana is MUCH more difficult than your average case.  He has GLOBAL anoxic brain injury.  Every piece of his brain “died” off when he went 45 plus minutes without oxygen.  But Dr. Gifford said to call his office ASAP and get him in there.  He kept saying, This will be fun.  Anyone wanting the challenge of helping my son and calling it fun must be good and REALLY love their job. I was THRILLED.  I love our neighbors and I trust he won’t do any voo doo stuff on him!  =)

He explained with his seizure disorder that he does NOT need extensive work outs (ie NAPA).  He is being over stimulated which is what he says is causing the seizures.  Anything he gets needs to be slow and smooth because it is too much for his brain to handle and soak in.  He showed me some exercises with the eye that effects his nerves and can stimulate the brain. Obviously Santana has global damage but it is most on the right hemisphere which effects the left side of his body.  So Dr. Compton is focusing on stimulating the right side with SLOW figure 8 movements in the wrist and leg.  Also by touching his eye.  Which Neurology has done when he had Doll eyes which is where he didn’t blink or move.  He is a STRONG believer in Hyperbarics Oxygen Therapy and thinks these exercises should be done in HBOT.  Unfortunately, where we went, he was in a car seat and strapped down so it was hard to get to him and in the hard chambers, he has to wear a helmet type thing… if you look in May of ‘07 you can see pictures to see what I am talking about.  So I can’t work with stimulating his eyes.  Hmmmm… well, I can get a LOW ATA  soft chamber for like $12K UGH.  What to do, What to do!!!!  I need to start on fundraising again, that is a fact. Between that and his $15K Quadriciser machine we want.  =/

We go back on the 30th to check on our homework and give the next thing.  Time for some light Stimulation Santana!!!  We want some improvement!  We are just blessed to have found this.  I KNOW this is a good place.  Not only did I meet Dr. Gifford himself, but that same night, I was doing my typical blog reading to see how everyone is doing and Stacey (Luke’s Mom) wrote about one of the stories Dr. Gifford told me and that she was taking Luke there.  I was so excited to read that because I was JUST getting ready to shoot her an email to tell her about him.  YAY!

Nothing else too exciting going on. OH… Jett did get to speak at the church a week or so ago… but he locked up and got shy on us.  It’s ok.  He will have more chances to do so.  I pray that God will be able to use him and his testimony someday.  I can only help he uses what God has shown us for good!

I had more to say, but I have been to tired lately to remember.  Thanks for the emails and encouragement.  While I do emotionally… and mentally struggle with this, your encouragement and Gods grace helps me take each step and want to fight for Santana.

I say to myself, “The LORD is my portion; therefore I will wait for him.”
Lamentation 3:24

Writer’s Regret…

What I wrote last night was obviously from deep within the heart and I can’t take back what I wrote.  But I can apologize for my lack of faith.  I had a long heart to heart with God last night.  I know I have not been trusting him with my (his) son like my faith tells me to.  So I want to apologize for being so negative.  I am just so overloaded right now and I feel so alone in it.  I feel like a walking zombie.

I could delete what I wrote last night.  But it won’t take it away from the people who already read it.  I am trying to gain my belief back.  Really I am.  Please be patient with me…

So full but yet running on Empty

Am I getting through tonight?

How can 1 person with a plate so full feel so empty.  Ever since the last hospital stay, I have been suffering from flashbacks and dreams… or should I say nightmares.  My mind is filled with fear and I relive the moment over and over again.  I ache.  Tonight as I was putting him to bed, I started to cry… ok… I was sobbing.  And the cool thing is Santana moaned right with me.  He is telling me he is trying.  I just know it .  He feels bad.  I kept telling him I need him. and then he would groan back at me.  I do.  I ache for his smile right now.  Maybe what set it off this time is being around lots of kids playing and dog piling each other and Santana sitting in his chair… having a seizure.  He wants up.  He wants that.  But his brain stops him before he could even try.  It hurts. Deep.  I have been cut deep into the soul. And nothing can replace that emptiness. NOTHING. I have begged God to fill those gaps but distance keeps getting further and further.  I don’t know what to believe anymore when the word promise is involved.  I have been given too many false promises.

I miss you Riley Girl!

In  II Kings 20:5 I am promised to be healed when looking into a healing devotional.  ”… I have heard thy prayer, I have seen thy tears: behold, I will heal thee”  But that was not my promise.  That promise was to Hezekiah, not Santana.  What do I need to be heard.  How hard do I cry out to my Father God for him to hear me?  I don’t know I just don’t know.  I miss Santana.  I miss being TYPICAL.  I miss loving life. I miss smiling. I miss going out as a family.  I am missing my life… I am missing my boys’ life… Santana missed his life.

I have some interesting and good things to blog about… but I need some more information and honestly.  3 hours of sleep last night, I am a bit disarrayed to write or think anything.  Maybe Too much change at one time.  The move, the hospital changes, the dogs destroying our house because we have no fence to let them run like they need to, then getting rid of a dog.  Ugh.  So much going on… I don’t think I have anything stable in my life right now.  Oh yeah… I do.  One thing that won’t change is my son is suffering…

Urgent Care Trip…

This time is was not Santana.  Yesterday, Tyree woke up at his usual 5 am fine and dandy.  He was a wee bit cranky.  He wanted to go back to bed by 9 am. Which I didn’t think too much of.  He was up early. But he was fussy and just not comfortable.  He finally fell asleep on my bed with some cartoons on. The problem?  He slept and slept and didn’t want to wake up yesterday.  Didn’t eat much, most of it was on his shirt.  He had a fever, no doubt. ALL my thermometers are so stinking slow to take.  He was not happy.  I need to invest in a quick ear beep one.  Santana never puts up a fight.  =D   However, by mouth I got a reading of 103.8.  By encouragement of my facebook friends, I took him into urgent care. Even after 3 hours of Motrin he was still 103.5.  With Santana I don’t blink much.  But this is my healthy child with no complications reading that high.  He developed severe diarrhea just before heading out.  It still has not stopped 24 hours later.  His bottom is so sore.  Needless to say they think it is viral. Yup… nothing they can do.  They gave him tylenol since I had given him motrin and the fever started to break.  Not sure if that is what broke it or if it was all his screaming and squirming he did when they were putting an iv in him.  He was dehydrated.  I could not get him to drink.  He only had 1 VERY light wet diaper yesterday.  His blood kept clotting so he had 4 pokes last night. Santana is easy.  He doesn’t show much emotion and kick and scream.  No wonder when we are at the ER with Santana they are so worried about holding him down… when I know nothing will happen.  Tyree is a strong booger.  After all that crying and sweating, his face swelled a little.  When he looked up at me my heart skipped a beat.  He looked just like Santana did in the ICU.  His face swelled, his eyes could hardly open, he was so tired they were not focused.  It was so weird.

Today, Tyree slept in… very unusual for him.  I went to check on him and he got under his bed and stuck.  When I opened the door, whew.  The smell bout knocked me out!  The runny diapers began!  He smelled like puke.  I would take the skunk smell in my house over this anyday.  Which if you have been following my twitters, that outdoors smell has been in our house 2 times.. and again last night!  URG!

I am gonna have to cut this off.  Tyree is REALLY fussy.  James is down the street at a neighborhood BBQ.  I have to miss out due to a sick kid.  =( But I first wanna say this.  James has a customer that is a pastor.  He has met Jett a few times when he has gone to work with James.  He asked if he could speak at a program coming up in their church.  Wasn’t going to say no to that!  Jett is so excited about it.  He can’t wait!  Pray that God gives him great wisdom to speak to the people.  He can’t wait to wear his pin stripe suit tomorrow.  What a stud!  I am proud of him for wanting to do this.  I am hoping we are all well so we can ALL go.  Maybe he will be a young preacher like his great grandpa Anderson.  I think he started at 11.  That would be amazing.

I just hope I can get out of the bed in the morning.  My arthritis has picked up really bad in my joints.  In fact… I am barely getting all this out.  Every knuckle is killing me.  My hips, and dare I mention my feet that I can hardly walk on. I want to be in a hot tub right now.

As for Santana, he has been doing good.  His O2 stats have been amazing!  He rocks it… BUT he is flirting with a fever!  He keeps getting to 100.  I am getting nervous.  If Tyree got a high fever, Santana can get an extremely high fever as his body does not control his temperature well.  Pray he stays strong!

Thanks for checking in on us! Hopefully I can get some video of Jett.  =)

Da ta da DAAAAA! (like… FINALLY)

This is SO not good

I know this is a long time a comin’ . Please forgive my absence.  Wow.  Looks like just a few posts before the last, we were in the hospital.  Since I last posted, as you know from twitter, we were back at St. Joes for a different issue other than seizures and pulmonary.  I was doing my thing and my nurse came in white as a ghost.  She said there was blood coming from Santana’s G-tube.  I didn’t get too spooked, he bleeds sometimes during vest therapy.  So then… I walk in and see his shirt covered in blood!  Then we lift it to see it thick on the inside of his shirt and bleeding around the tube.  HOLY COW! I had Tyree so I was trying to figure out what to do with him and if I should go by ambulance or take him to ER myself. I was sick. Then she came back with a syringe filled with 30 ml of blood that she pulled straight out of the tube!  I panicked!  We could not get a blood pressure reading.  My neighbor took Tyree and off to St. Joes we went.  They pulled us back right away.  They immediately said they are going to admit him and get some blockers and run some tests.  Then we sat. And waited … and waited … A very long time.  I guess the blood work was good enough not to panic. Plus it was just FULL at that hospital. We got into a room on the peds floor.  Whoopee.  I rather have had tests run, tell me what it is and off I go. I did not want to be admitted.  When he is admitted. It is a big deal. We are there at least 4 days! In this case, 5/6.  The SECOND day being there, they sent a surgeon in to determine it was not trauma from the gtube/vest therapy.  They suggest a GI doctor. DUH!  So the THIRD day we saw GI who just treated it like an ulcer.  NICE.  No looking in there to make sure?  Weird.  But then the seizures kicked into high gear.  So then the Neuro team came around.  They said they were going to do an EEG but didn’t.  They said a LOT of things this time and didn’t.  OH WELL.  Needless to say, I was in the hospital for Tyree’s Birthday… that is 2 times since he had been born [=)]  My dad came and spent the night so I can go see my big 2 year old on his birthday!  I missed my family being together so much.  But I am thankful for INCREDIBLE friends.  My October Birthday Jennifers came by and we had a Pajama party. They were brave enough to do my toes  and I got my hair did. It was so much fun!  It made the night more enjoyable. We managed to get out of that hospital with ulcer meds the day before my birthday.  I really didn’t want to spend another birthday in the hospital.  So we survived but not with answers.

Really Not Good

The worst moment was when I was leaving that night to go home and see the boys.  When I got on the 3rd ave. bridge heading to the parking garage, I looked out the window and the memories flooded me.  It was just like a movie, flashbacks came pouring through my mind.  I could still see the tail lights of my parents blue Chevy truck as they were headed back to California. I ached all over. I froze.  My body overcome with fear and realization of what happened.  I went into a panic attack I have never experienced in my life.  It hit me harder than it did on December 16th, 2006. Had I been in denial for almost 3 years and it finally hit me?  I was shaking as I rushed to my car.  I could not let anyone see me crying.  Too many people in that hospital read my updates. I didn’t want them to see the weak side of me.  I let people read it.. but no one could see me.  As I got to the top of the parking garage I struggled getting my key from shaking so bad.  My head couldn’t stay straight, at all. I shook in fear.  My breath was beat out of me. It was like someone took a bat to my stomach.  I called my mom once I calmed down, 20 minutes later, so I had someone to talk to so I could make it home, which is about a 45 minute drive.  She is so great to talk to and always has the right things to say.  But I tell you what.  I never want to relive a moment like that again. I thought I was going to be in the ER. I have never experienced not being able to breath as I did that night when the flashbacks of horror haunted my mind. I want these feelings to end. But I think now, I have finally came to acceptance.  This was my realization of what my life really is now.  This IS Santana.  I can live in fear or choose to accept it and move on.  Please pray for my understanding and feeling.

Oh my.  I have so much more to say but I am forgetting!  umm… so we get home and he had a few stools with blood.  Scary.  I called the GI but he was on vacation and they said to go to the ER.  FORGET THAT!  NO… no way am I sitting in that hospital any longer!  Oh… did I mention I was in a shared room with another patient on CONTACT precautions?!  FUN.  We did end up getting a single room.

We got a new GI doctor today that seems REALLY GOOD.  I like him. Very personable…. unlike the other. So he thinks too that is was an ulcer. And that it is common to get them right under the g-tube bubble which is why it bled out. So we will see what happens.  No blood in his tract today when tested. WOO HOO!  I am excited and really excited (only special needs parents can understand this) for the new Cardon Children’s hospital!  I gotta give that a try sometime.  NOT THAT I WANT HIM IN THE HOSPITAL!  But you know…

It has been a very ROUGH couple of weeks.  Santanas seizures are HORRIBLE.  So bad he can sit up straight if the head of the bed is propped up enough.  But they seem to be settling well.  We are at a full

We ended the month GREAT!  Our neighbors had a halloween party. They decorated a trailer to look like a pirate ship. AMAZING!  We went to the “regular” neighborhood to trick or treat in it.  We were not planning on Santana going but he fit up there too.  It was amazing to have the family together on this night. So much fun!  I just love it around here!

We are still trying to settle in and unpack.  It is a never ending story. Especially with no fence and a 2 year old that likes to escape… oh and keeping all our dogs on track too. OYE!  We are getting ready for irrigation.  Things are sloooooowly coming together. The boys LOVE it out here.  Although.. the skunks are starting to get on my nerves.  First, our 2 danes got sprayed while I was in the hospital. It smelled up our house really bad and took 4 skunk baths in a row to rid the smell.  Then last night, our dogs went out to go potty and didn’t return right away.  James opened the door and WHEW!  SKUNK CITY!  It smells like it today too!  Santana’s bathroom window was open. GAGALICIOUS!  That is what I get for becoming a country girl!

On an upbeat note.  I heard an odd sound that went on FOREVER.  I thought maybe the dogs were outside whining and they got skunked… again.  But as I went for the window in Santana’s room.  IT WAS SANTANA!  He was babbling in his sleep for like 5 minutes this morning.  He looked so well like he could jump up and start making words.  Today he has lifted his right arm FREQUENT!  YAY!  GO NANAS!  I will take anything positive at this point.  I am so done with getting bad news after bad news.  DEPRESSING!  This is good.

I am not sure what else there was.  It was such a bad couple of weeks… I think I rather not remember.  But I will keep up with the posts more often.  Sorry about my absence.  Just remember to check www.twitter.com/prayforsantana or look on the sidebar if you have not heard from me in a while.  

Thank you everyone for your prayers and notes of encouragement.  I really needed it in a time of hurt and pain. I don’t always respond and my apologies.  But you can be sure some emotion is brewing inside me when I disappear.  Thanks fur understanding!