Seriously. I don’t feel good. My throat is hurting and now my tummy is spinning. Tomorrow, Santana and I leave for Utah Shriners. Today I found out his oxygen tanks can not go on the plane whatsoever. That scares me because it the last 2 days he had to go up to 4 liters of Oxygen. I have to have faith in God that he will not need it tomorrow. Thankfully, I called my care coordinator at Shriners and found out they do have oxygen in the rooms there and she is going to send a small tank in the van to pick us up. So we can make it a few hours (including the airport wait). I am thinking positive.
I also am just sick of his back. I am sick to think about his back I should say. I fear what they are going to tell me for sure. I really wish I had some more opinions on rod surgery. I wanted to talk to his chiropractor and see his opinion but he was WAY to busy today. I don’t know. I just don’t know what to do.
I am scared. I think maybe because I am there without James to help me make a decision. I don’t know. But I am scared. The thought of surgery scares me too now that he has oxygen depravation. He may go on a vent and never come off. Who knows.
But while scared all the while, I am also thankful. I am thankful for Ellen watching Tyree tomorrow. And I am thankful for our new rockin’ neighbors who are going to keep Jett overnight, take him to the bus stop and let him hang there until I get home to get him. Thanks Shaun and Denise!
Now… Deep breath. I gotta go make a med list, draw up meds, get meds ready for tomorrow too… and go to bed. I need all the rest… and medicine… I can get.
Please pray for his oxygen levels to stay above 90% tomorrow. Actually… pray they at LEAST stay 95% Pray for NO SEIZURES! Pray we hear some AWESOME ideas for Santana and we can get him on a road to recovery. Pray I feel better too. Traveling like this and feeling like crap is no fun.
You need to hit pause on the music which is on the dancing bear below.
Also… if the video is jumping, wait for it to load then try playing it. This will avoid the skipping of video and music.
If you likes… this is what I used to do under my business license and I think I am going to kick it off again to raise money for Santana. Christmas is coming fast. I can make full quality DVD’s in custom cases! Let me know if you are interested. This can help Santana reach his goal for his exercise machine! You know you have a TON of digital pictures and video that you do not know what to do with. Make use of them and help Santana!
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Today we missed church because Santana woke up with 103.2 fever. We leave on Tuesday to Utah. He CAN NOT BE SICK!!!!! Seizures… 3 tough ones today so far. Pray!
This is a rough cut edit. I have MUCH more to do but I can’t get footage off my camera. These are all off my phone, so not the best quality. Read, Enjoy, Rate it on Youtube and leave a comment their. Lets get him high on the search engine there!
This week has been a VERY trying week. Santana’s seizure was about an hour last night. The stiffness (the worst part) stopped about 5-8 minutes but he continued to have his eyes rolled back and every time I tried to lift his eyelids to check on him… it was so hard because of the tone in his face. Tight shut. He had red dots on his little face too. I know Jett had that when he was sick once and they said it was from strain when vomiting. So He was Straining with that seizure for SURE. I was scared he wasn’t going to wake up today. People ask why I didn’t take him into the hospital… maybe I was selfish. I couldn’t stand the thought of another hospital stay. But I did monitor his oxygen level and with that being our new issue he stayed in the low 90’s. So that was good. Had he dropped… yeah… I would have called. Usually and THANKFULLY he does not drop during his seizures. Weird. Probably because he doesn’t have much blood flow in the brain anyway. Either way… these Seizures need to Seize! He looses everything and gains LOTS of tone when this happens!
So as you may have read on my twitter update, We got our tickets for Utah after some confusion. We really need prayer for this trip on Tuesday. It will be just Santana and I for the day. As we were talking with the UTAH Shriners about medical records and I said he will need new xrays on his spine anyway because it is constantly changing. She said SPINE? Ummmm… it was on the application (I double checked). The doctor we are seeing only does hips. WONDERFUL. I could panic… but it will work out. I am sure we will be taking lots of trips up there. I do wish I would have applied to the LA one then I could have seen my mom. But I have heard the best is in Utah. Who knows. But we need prayers that he will have an AWESOME appointment and we can make a GOOD plan of what to do with his poor, deforming body.
To ease up some tension, I got a call today from the RN of my nursing company stating that the State nurse… with her help… bumped up our nursing hours!!!! Maybe his oxygen isn’t such a bad idea. Well… Honestly… needing no nursing would be more ideal. Ha ha. BUT… we went from 40 hours a week to 54 HOURS A WEEK! Woo hoo! That is like 2 extra days!!!! Praise God! Now we just have to get nurses that can WORK the hours… You don’t use em… you lose em! So Maybe we will have a Saturday nurse!!! Who knows… I gotta figure out a schedule. So… YAY!
I am deathly tired from all my stress that has been dumped on my shoulders this week. I think I have the house picked up okay enough so that I can relax. Santana did have some more seizures today… was pretty much wiped out off and on today. Whoops… As we speak… Oxygen is going off… 84% Time to hook him up to the Mean Green Tank! Thanks for your prayers guys. I felt really empty today… But I could feel you guys!!!!! Thanks for the pick me ups…
OH! The Tram Mai story aired on NBC 12 news this evening! Thank goodness my friend Kristi saw the teaser and text me right away. I recorded it. Tiffaney with Phoenix Children’s Water Watchers said most likely it will air again on Friday and Sunday. Most likely Friday Morning… TOMORROW and Sunday Night.. or Vice Versa… check it out!!!! If I find a link to it, I will post it. It wasn’t too bad considering I had already been in the hospital with Santana for 36 hours already…
I truly fear that Santana is in a Status Seizure right now. He has had some VERY bad HARD CORE seizures this evening. We went to Home Depot tonight and he slept the whole 1 1/2 we were there! (After having a big seizure in the store). Then when I was getting ready to do meds, He had one where his whole upper body sat right up and his face looked like it was in PAIN. He only opened his eyes briefly… in that time, rolled back in his head. Then finally relaxed after being tight and crying for a few MINUTES. But then for another 10 I looked under his eyelids and still rolled back. He is moving like a reaction to noise and while doing meds… but NOT opening his eyes. This scares me to DEATH. I just ran and checked and his eyes are still back a ways.. Oxygen has surprisingly been ok… low 90s. I am running circles on what to do. The one rescue med we did have is now part of his daily routine. I need to keep an eye on him. If I end up taking him in you can read about it on twitter… see bar on the right.
Pray for him… These generalized Tonic Clonic… but really without the clonic part (the constant jerking… he just gets really stifff and holds it … the Tonic Part) and possible status seizure is just going to fry the brain more. The more seizures he has, the more his spine rotates.
When is enough really enough? Has this kid not gone through enough? Since June 25th, it has been a BATTLE. He is fighting so hard. But does he really want this? I am scared for him right now. I am scared to know what the near future hold for him right now…
Headed to Utah. Wish I could say it was for the Sundance Film Festival… but instead Shriner’s Hospital here we come! We got our ticket confirmation after mass confusion! To add to that stress… I just found out the doctor he is seeing doesn’t do spines. Just hips. WHAT?! So now I am Nervous as all get out. How many times will I be going back and forth! Oh well… it is only like 5o minutes more of a drive (flight) than going to CRS at St. Joe’s. Oh.. forgot about security. That will be fun. I guess it will work out. I am just bummed it was not a doctor that does both. Plus they called today wanting medical records… I should have thought about it… but didn’t. They need 3-6 weeks… I have 1 ONE week until I go… Plus no time to go down to CRS to fill out the paperwork. I was just there… BUMMER!
Needless to say… I am excited and READY for another opinion! I want to get moving on this so he can get back into the swing of things with therapy! This will be WONDERFUL! Just wanted to let you know we are ON OUR WAY to Utah next Tuesday Morning…
Anyone up for Tyree?! I fly out at 8:35 am. Early… I know… And I come back at 6:35. It will be an all day thing. Need help getting Jett to school and somewhere after also. PUHLEASE! Thank you all! You have been AMAZING! Please read entry below… Help make this wish come true!
I think this machine would be VERY beneficial to Santana. Sadly… insurance does not cover it and it costs a whopping $15K!!!! I can cut out our next trip to California’s Napa Center and only need about $10K I know that is a LOT in times like this. Every dollar helps. Please help us reach this goal!!!! Every dollar counts!!!!
I think this machine would be VERY beneficial to Santana. Sadly… insurance does not cover it and it costs a whopping $15K!!!! I can cut out our next trip to California’s Napa Center and only need about $10K I know that is a LOT in times like this. Every dollar helps. Please help us reach this goal!!!! Every dollar counts!!!!
I think this machine would be VERY beneficial to Santana. Sadly… insurance does not cover it and it costs a whopping $15K!!!! I can cut out our next trip to California’s Napa Center and only need about $10K I know that is a LOT in times like this. Every dollar helps. Please help us reach this goal!!!! Every dollar counts!!!!
So… I know I said I have lots to say… I have just been TOO busy. So something really important that I missed out on. Jett, my oldest boy, turned 7 on August 9th!!!! WOO HOO! He is growing up so fast. We saved some money and didn’t have a party this year, instead had family over… just mine ended up coming… but he knows he is loved… and we were SOOO last minute. It was fun. He is going to get a quad for the property.. once we find a cheap enough used one. =/ Happy Birthday Jett. You are the most amazing, brave, young man that I ever have known. you have had to grow up so fast and have become an AWESOME helper for us with Santana and Tyree. The best big brother in the whole wide world!!!!
So I am going to throw my next shout out to LIFETOUCH photography for sending out an award winning photographer Andrew Faulds who is located at Cilento Photography in Tempe, Arizona on McClintock and Southern. I would HIGHLY recommend him to ANYONE as he made our ugly mugs look GREAT! hee hee. No really. He gave us a big print out of the family and then made 3 black and white canvas photos. BEAUTIFUL work. He gave a BEAUTIFUL DVD of all the photos too. I didn’t want to tell because we are making some Christmas gifts for family out of these. But Credit needed to be given where Credit is DUE! Also, he had another photographer there to assist him that did AMAZING with the kids. Tyree just adored him. If it was not for Roger, we would have lost Tyree after the first few pictures. They made an incredible team! Just AMAZING! Thank you Nicole for mentioning us at the Lifetouch meeting to get a photographer out to our house… An AMAZING AWARD photographer! I wasn’t going to post any pictures but I thought I would put Jett up to honor his birthday. He was so studly. When Andrew said give a serious face… Jett sure knew how to do that! He is a stud! I need to get him into modeling.
Santana is doing good. Up and down on the oxygen. I don’t get it. I really don’t. He can go from 95% to 80… today in the 70s like nothing. At least he isn’t struggling anymore. It is just strange… OT said he did AWESOME on his hands and knees yesterday… I was at the house… usually he cries on his knees. Not this time! Woo hoo!
As always… I am looking for the next thing to do for him. This time, since we are going to have a therapy room, I want to focus what we can put in the therapy room. I have 2 big EXPENSIVE pieces of equipment that I want for his room. It is something we can do at home EVERYDAY that can help him improve.
The first is the therapy cage which is roughly $5,300 with shipping… This is like what they used at the NAPA center. I will have to get the video up so you can see. It is an amazing piece of equipment that gives extra hands while working on sitting, head control, standing. He can even lift 1-2 pound weights with the pulley.
The second is a whopping $15k but the best thing I have seen for him yet. It is like a bicycle machine that will move his legs like he is on a bike and pull his arms up too…as if he was climbing a mountain. This will give him fully body range of motion. I am in love with this concept. I don’t know how I found it today… but I did and I feel in LOVE! It is called the quadriciser.
These are at home equipment that can be used forever… so well worth the money. Now I just gotta think of some fundraiser ideas…
And my God will supply all your needs according to His riches in glory in Christ Jesus. – Philippians 4:19
Follow the story of Santana who fell into a pool at 22 months in the care of a babysitter. By God's grace, Santana survived after 45 minutes of no oxygen and 30 minutes being clinically dead. His journey to a miracle begins December 16th, 2006.
Please help with therapies for Santana to have a better quality of life! It is much appreciated and I pray you will be blessed in return.
Uncategorized | Santana's Mommy | 
August 31, 2009 5:24 pm | 
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