My Champion

There is no fighter like my boy Santana!  He is so amazing!  He just keeps pressing forward and I can’t be more proud to be called Santana’s mom (and Jett and Tyree because they are great too!)  Santana is just tough!  He has been through the worst in less than 2 years and he is here.  He is not backing down.  If he wanted to give up, he had his chance.  He is not giving  up and neither am I!

Today was a LONG day.  He had a 10am appointment up by St. Joseph’s with the vascular doctor that did the repairs.  All I can say is, I am glad this is the only vascular problem we have…

We had lots of time between that and the next appointment at 3.  So we went and got medical records from the surgery and went to lunch and then showed up a bit early and got in.  Santana’s neurologist is used to me and my craziness!  He wants to go up another 25 mg. on the topamax but I asked if we could try the ambien first.  To my surprise he said OK!  We were going to do that about a year ago but we were dealing with the seizures and messing with meds so much he did not want to try both.  I was excited he was still open to it.   If you are thinking…Ambien?  What you want him to sleep?  OH NO… read this story (click on read this story [grandma]) You can google the video for it too.  I believe it is on youtube.com but I heard not everyone can see my youtube.com videos cause your work blocks them…  

Anyway.  So once they figure out my stinkin’ insurance and get it to run through.  We are going to RISK it.

Also, I have been reading  up a lot on vasodilation therapy.   I got an interested look from the vascular doctor until I mention opening up the flow in the veins in the brain.  That was beyond him.  But good for the rest of the body.  Then I mentioned it to the Neurologist…did I say I just love how patient he is with my crazyness?  He said doing that with stem cells makes more sense to him.  He explained that the brain is a VERY protected “organ” (is it an organ) well, part of the body and there is the blood brain barrier or something like that.  Well, this blocks out a lot of stuff and why some meds are not as well for getting into the brain (in example his seizure medicines).  I know…blah blah blah.  However he thinks this would help and make more sense as far as getting the stem cells to get into the brain.  Hmmmmm….

I still have research to do on this and have NO idea the costs.  But to my understanding it would be putting him on different blood pressure meds and blood thinners (done by a board certified neurologist).  One thing I do know is we may be taking a trip to Florida!  Who knows…it is just talk now.

I am hyped up and now ready to wind down…LONG DAY!  Thank you for your prayers!  MOST OF ALL…thank you for your encouraging words.  It keeps me going!  God is good and I feel a DEFEAT coming! Satan is under my feet and I am going to stomp until I see my baby raise up!  THIS IS IT!  Believe it.

Doing Ok…

When I said I all I wanted for my birthday is for Santana to do something new for my birthday, I certainly didn’t think it would be to swell up and give me a heart attack.  Santana was crazy swollen.  That last picture was actually taken on Friday, it looks good there.  Imagine it worst.  We had his legs elevated and by the time we got to the surgeon it was fine.  We opened the diaper and it looked great.  Can you believe it?  Well, I can.  Prayer works, huh?!  Thanks for all that did.  Please continue to pray for comfort for Santana.  He is tender without a doubt.  

Today Santana is going to relax.  There is nothing going on with him.  I am going to get my MUCH needed cortisone shots in my feet as my arthritis and plantar fasciitis has been hurting really bad.  So I should feel some relief today.  

Thursday we have an appointment with the vascular doctor and neurology.  It will be a VERY long day because there is not enough time to go home in between and too much to stay.  

That is all I have to say for now.  Thanks for the prayers!  We can feel them! 

Prayer Request…

Santana is REALLY swollen around the incision where they cut the artery. Not sure what is going on but it is hard. He is running 100.1 fever which is not a big deal for him, he always runs fevers. So I don’t know. I really don’t want to go to the ER. But if he has to he has to. I don’t want a hospital visit. My parents are here from L.A. They came for Tyree and my birthdays. (That is the bad thing. Every birthday Tyree has, is a reminder I am getting older)

So really, we need prayers. Pray for the swelling to go away and keep him healthy. I want both his legs so he can walk someday. NO INFECTION!!!!!

Tyree is 1!

I can’t believe Tyree is a big 1 year old now. My how time just disappears! He is so stinkin’ cute. I swear, having him around is like having my fun loving Santana. He is a spittin’ image of him. He brings so much joy to us. Happy 1st Birthday Mr. Tyree Jordan!

Santana continues to do awesome! He amazes me! The only questionable thing about him is when I was getting him out after church, I notices his urine a bit cloudy. It was almost like powder in there. It could be his meds, it could be a bladder infection from the catheter. It is so hard to tell. No fevers though. Thursday we have an appointment with his vascular doctor and neurology. What a crazy busy day that will be.

The IEP went ok. We decided to do home school which will be 4 hours a week. They think hearing is his best bet and the reaction he has around the other kids. Foundation for Blind Children would be awesome for him and his vision. But they said most are non-verbal and they think he would benefit to hear other kids. But with all we have going on (another surgery, stem cells, 3 week therapy in L.A.) we decided to just stay at home until life is a bit more calm. It works out where he seems to get more therapy this way anyway. Plus we get to stay away from all the sickies for RSV season.

Thank you to those who left encouraging words. That is what really keeps us going more than anything! For those who don’t know what twitter is, if you go to this website, www.twitter.com/prayforsantana. I can write important updates under 140 characters.

 It was easy for me to use while in the hospital because the signal strength was not strong enough to do the internet, and it is a pain to blog from the phone, but I can just text my updates to twitter and it is there.

And yes, I did find Santana’s costume online…I am praying it gets here on time! I can’t wait! I wasn’t going to dress him up, but when he gets better (which I am still believing for his breakthrough…God is faithful) he will have pictures to look at to show we tried to keep life as normal as possible for him.

Anyway…I am going to try to get pictures up before uploading. If you read this and there is no pictures, Know that my internet keeps going out. I bought a new modem and it still does not work all the time. So I will upload the text before I lose it and hopefully you got to seem some pics.

School IEP + Support Coordinator + Life = StReSs

We really need your prayers for tomorrow! Bright and Early at 7:30 am. We have an IEP REDO meeting at Santana’s school. For those who don’t know, and IEP is basically their plan and goals for Santana. So like now, they have tracking as a goal. Well, tomorrow they are taking that off cause at this point they think it is unrealistic because there are things that have to come before that. Plus we will be adding vision therapy. This isn’t the problem. PLACEMENT is the problem. We got into Foundation for Blind Children! The problem? They are MAKING me take that negative nurse there. I think they are out to annoy me! I don’t understand how she can possibly go when she has another kid on another day at the old school. This school will be 4 days a week and 2 hours longer. Which means he will have to have a feeding there. Which means I will be worried he won’t get it right or too much or something. Let’s just say this nurse does not have the best rep for following directions… Basically, they are trying to make me decide to do home schooling by sugar coating it and saying you don’t want to expose Santana to the flu season..blah blah blah. I really think they will save money by doing home school. What’s the point? He can’t communicate with the other kids anyway…not my thinking, theirs. Hmmmm… can we say LEGAL COUNCIL?

Then to add to the frustration, I called my support coordinator on MONDAY and have not heard back. She knew a meeting was cancelled due to Santana being in ICU on Friday. I would think she would at least call to reschedule. Weird! I wonder if we can switch coordinators… Too bad I can’t switch districts!

I feel better. Whew.

Can you believe Tyree will be 1 on Saturday?! I can’t! This year has gone by so fast! I had to go get him a new car seat. Can you believe I was still hauling him around in a carrier?! He was a back breaker!

Yesterday, we went to orthopedic clinic at CRS. It was an early recheck but that is what they had. So they left the catheter in and wanted me to have a follow up with the vascular doctor who repaired his artery and vein. I called their office…oh boy…that was fun to get through their head. “We don’t have you in our files…” It was not planned… anyway. We got in next Thursday. The bad thing is, I have 2 appointments on Thursday up by St. Joe’s. What is bad about it? They are 4 hours apart!!! Too close to go all the way back home and too far apart to do lunch. Fun Fun!

I gotta go get the boys ready for church. Is anybody out there anyway? Or am I just writing to my family (what little is around) whom already knows all this from conversation over the phone? Somedays I want to quit this thing cause it takes a lot of time. Maybe I will just do twitter. I don’t know.

Nurses and Brain Injured Families!!!!

Watch Oprah today! It is on right now here in Phoenix! It will replay at 9 if you missed it. For out of state peeps…check your listings. Maybe it plays again at night where you live!

It is about Jill Bolte Taylor who is a neuro scientist who suffered a stroke in which had her in a semi-conscience state. It took her 8 years to recover…BUT SHE DID. And they are really focusing on the caregivers and nurses. They said they can easily be ignored since they are not responsive, but yet they are. POSITIVE energy is the only way they can feel what is around them. Their care is so important and the attitude around them. I don’t know much else of what they talked about. I just tuned in but I TiVo’d it and will be in tune to it. I just wanted to let you all know so you can check it out! And thank you to the nurses and staff that talk to Santana as if he was talking back to them! YOU GUYS ROCK!

Santana is doing good. He is sleeping a lot. WHICH, they stated is extremely important for these guys for recovery. I am always yelling at people to let him sleep. DAD…don’t worry, it isn’t just you. Some people that work with him daily do it too. Fevers are subsiding.

Oh, he started Music Therapy today. He REALLY liked the guitar. He was sleeping and nothing brings him to a wide awake state, but this did. He was very IN TUNE to the guitar. I am excited for this!

Prayers needed.

Santana has been running a fever. He is HOT HOT HOT! They said to come back to St. Joes if he runs 101.5 or higher. The problem is…how do I know it is due to infection of the incision and not just a cold. I had a sinus headache when we took him. So I hope I didn’t pass it to him. But I rather it be that than an infection from surgery.

Thanks for the little poop prayers. For the first time in FOREVER, he had just a big, solid, round poop that stayed right where it came out. Woo hoo! No messes!

I will keep you all updated. Thanks for the continued prayers! I can feel them. I am actually holding up really well. JUST EXHAUSTED!

The only thing MINOR about it was Santana’s age…

Well, I guess you have to be careful what you wish for. For those who didn’t know how to follow the surgery updates at www.twitter.com/prayforsantana [such as my grandma =)]. I will recap. As we all know, Thursday, Santana went in for his adductor (not abductor…it was in the inside) release and ankle release to fix his drop foot. He was running a 99.6 temp and sounded junky. I was afraid they were not going to take him. They did and they said it would only be 1 hour and 15 minutes to 1 hour and 30 minutes and as long as he did good going under and coming out of it respiratory wise, we would go home . Yay! So we were waiting in the surgery waiting room. Then the volunteer came to me with the phone. My heart sunk. The lady on the other end said, “Santana is doing ok, it is just taking longer than expected.” That was it. Weird. It had only been 1 hour and 20 minutes…why did they call to just say that!? I just didn’t feel right about it. Then 10 minutes later, Dr. Shindell, his orthopedic surgeon came and sat on the couch next to me. He first stated that Santana was ok. He said there was a vascular doctor in there making some repairs. Apparently, Santana was so tight that everything was mixed together and the main artery in the groin area and important veins for blood flow were very close.

Well, that artery in the left leg was cut in half in the process of cutting the muscle and a vein had 2 nicks in it. So basically he bleed and he bleed a lot. This is a simple, minor surgery turned MAJOR surgery in a matter of seconds. So a vascular doctor was in with Santana repairing the artery and vein. I asked his orthopedic surgeon, “This happens right? This is something that happens sometimes?” Dr. Shindell said he was embarrassed to say no, it was a first for him.

Another hour and a half goes by and he comes in to tell me they are finishing up. I asked how his O2 saturations were and his heart rate. He said Santana was doing beautiful, but as for him, the surgeon, he lost a few years he said. I didn’t think much about it till I found out more about the artery and the veins and that was a SERIOUS repair. He did loose a lot of blood and had to have a blood transfusion. This is his second one he has had to had. Not sure if I can even say he is my flesh and blood anymore.

Needless to say, it took him another hour and a half in recovery until they let us go back there. I was super duper worried. Apparently he was intubated. I am not sure if that is standard procedure because of his history or what? But either way, I think what was behind he O.R. doors was a lot worst than we will ever really know. It was bad enough to land us in the ICU. But let me tell you! Santana is a TROOPER! He ROCKS! I can’t believe what a fighter this kid is! He hasn’t had any pain meds since Thursday night! What a man!

The only other issues we ran across was the fact that he was on an anti-biotic prior to surgery and had many days left, they went ahead and did it through IV. Well, 2 of those 3 injections caused him to rash out all over. It was bad. I have a picture I will put up, but I gotta find the camera connector for the computer. The third time they did it slower and we took some blankets off. That was a minor issue compared to his blood squirting everywhere.

Ya know, here comes complete honesty…be prepared. I have prayed and prayed for God to just take Santana. It would be easier for us, and a relief for him. He could be free and pain free. God had that chance. A main artery was cut completely in half. His blood loss could have taken him. I truly believe that God allowed this to happen so we can truly believe that there is purpose for Santana on this earth. His healing will come. In 22 months…Satan tried to take him down, to kill him, to destroy him. But God just laughs in his face because Santana rises bigger and better than ever! This kid will fight to the end! He has something to show us all. He has strength that I can not find. Santana is simply AMAZING!

So needless to say, we came home today. Santana is still doing great. Although…he was clear as ever with IV fluids, but as soon as he started his feeds, he was gaggy and junky all night and now. Hmmmm… My next adventure will be to find an immunologist. I want to see what is bugging him.

Our biggest challenge will be his MASSIVE loose poops! He has 2 incisions in the groin area. They ABSOLUTELY have to stay clean! In fact, because of what happened in the OR, he has a higher risk of infection. They sent him home with a foley catheter in. Poor baby. He has been through so much! Please, Pray for little poops! Not a whole lot that will mess his bandages.

Oh, and I forgot to mention, his feet were not fixed yet. He lost too much blood and they did not want to risk anymore. It is probably a good thing, with his casts on, we would not be able to check his circulation. Speaking of. His circulation is AMAZING! You can actually feel his pulse in both feet for the first time!!! His surgeon said don’t tell me that, I don’t ever want to do that again just to feel a pulse.

Thank you St. Joe’s! Once again, you are all amazing!!!! And to my Pediatric floor nurse, Stacy. If you are reading this. I saw your ride when we were leaving today…I couldn’t help but laugh and at the same time think, what a smart, smart girl! Thank you everyone! St. Joe’s is the ONLY place I will take my Santana. We will be back for his feet…but no offense, I don’t want to see any of you on the floor!

Thank you to Dr. Shindell. Your compassion for what happened with Santana was enough. Thank you for your complete honesty. Thank you for admitting you lost sleep over this. Know that Santana is in good hands and I know with confirmation from the nurses that he had 2 of the best doctors working on him. He is ok. We are ok. It is ok. =)

Thank you for your prayers! Thanks for those who emailed and text me! It subsided my boredom for a few minutes!

And THANK YOU JESUS for sparing his life once again. I understand completely and I will wait for you. It is your timing, not ours. But sooner rather than later would be nice… =D

What is significant about 22?

So I am a little nervous about tomorrow.  This is why:

Santana was a healthy CRAZY wild little 22 month old when his accident changed his life.  His life was completely gone for 30 minutes.   Then he was given this new life and we have our new Santana.  LOVE HIM just as much.  Tomorrow (Thursday October 16th) is EXACTLY 22 months since we were given this new Santana.   (ironically, the back of the shirts we made for him says 2 seconds 2 late.  Someone pointed out 22 like his age was…I liked that).  So needless to say I am full of emotions.  I know it is a minor 2 hour surgery.  But more dangerous than the surgery itself is putting him under.  ESPECIALLY since he does not have strong lungs and prone to infection.  This is why they think 95% they will keep him over night.  

Jett is a bit freaked out about us being gone overnight.  Pray for him.  Pray I can figure out Jett and Tyree’s care for Friday.   I am indeed freaked out about that.  

To the ones I used to give cell phone updates to while we were in the hospital, I do not have ANYONE’s phone numbers anymore since I broke my last phone and got a new one.  I guess the best way to be updated is by my twitter.  I will try to give a play by play…

Pray also for my migraines and arthritis.  I have been in so much pain and my mind feels VERY absent…for most likely more reasons than pain.  

God bless and hug your children and tell them you love them… unconditionally! 

Surgery Tomorrow!

Tomorrow is Santana’s big day.  SURGERY. I thought they were going to deny him today because he sounds junky in the lungs.  AHHHHH!  So far they are cutting him open at 11 am.  We have to be there at 8.  EIGHT!  Can you believe it?!  Crazy.  So pray for him!  It is a minor out patient therapy but they are thinking they want to keep him over night.  No fun.  I don’t like to stay the night in a hospital and I am sure Santana does not either.  BOOO!    As long has he is healthy!  Can you believe it is a 2 hour surgery!  Crazy.  So please pray!  I will update tomorrow!