I have laid hours staring blankly into the dark. That is, until it was interrupted by the rooster crowing.
It has been 6 months.
7 months ago I had Santana as he was. There was no indication that he would slip away like sand loosely held in my hand.
Time is a funny thing. His death seemed so fast, yet I had 2 weeks and 2 days knowing for a fact that there was no going back after we already spent 8 days in the hospital. I had time to lay with him. To hold him. To smell him. To say, “I am sorry, I did my best to keep you alive and now I am failing.”
A few nights ago, I had it out with God. He got to hear what he already knew I had been hoarding in my heart. I cried, I yelled, I begged, I questioned. The thing that was repetitive to come out of my mouth was:
“WHY GOD?! IF THIS WAS YOUR WILL, IF THIS IS YOUR BIG PLAN…. WHY ARE YOU NOT TAKING THE PAIN AWAY? WHY DID YOU LEAVE ME WITH SO MUCH EMPTINESS?!”
We all know a booming voice doesn’t come out of the clouds and God directly speaks to you. But however… he did answer that.
Yesterday in church, Pastor Luke mentioned something about having a gaping hole in your heart and soul and that it is so easy to find things to try and fill it and nothing makes you feel complete. It hit me. That was my answer. And that is where God comes in. He says… I am here. Use me. Cling on to me. I can fill that hole and hold your pain.
He also gave the verse Romans 8:18 : “What we suffer now is nothing compared to the glory He will reveal to us later.”
Waiting is always the hardest. But I will hold him to that promise… or else I will have a few more conversations with him.
I am always afraid that life will go on to the point that Santana is forgotten. That he will become a vague memory. In these last 6 months I tried to remember the Santana I miss. But the only vision that comes to my mind is waking up Easter morning (4/20/14) to a lifeless body. Being told he’s gone. Remembering saying “no, no, no…” Over and over again. Saying “It can’t be… I just checked him 20 minutes ago!”
Time ran out. It’s gone. The nurses. The therapists. The doctors. The clinics. The respite stays. It. Is. Gone. Everything I retrained my life to be after his accident almost 8 years ago. Gone. Everything that formed my identity of who I was is gone.
I feel as though I have nothing left. But I know that I have 2 boys that need me. But in all honesty. Somedays… taking a breath is a struggle. Putting one foot in front of the other is a struggle.
I always wanted to do something in the film industry. But never in my wildest dreams did I think for a minute that I would have to act. I would have to put a smile on that is believable. I would have to make people think that I am stronger than what I am. I would have to hold my head up which is a very uncomfortable position, when all I want to do is melt down into my bed.
Somedays I am not a good actress. I fail at my lines. I let people down. I let grief take over. I disappoint. I push people away. I hurt people with the fists that fly from my mouth. And it leaves me on the dirty street corner with a cardboard sign saying, “inspiring actress, struggling to make it.”
I have failed. I am a failure. I couldn’t keep Santana alive. I couldn’t keep the sparkle in my eye. I couldn’t be a wife. And I can barely strive to be a mother to my other boys. And no where close to being the mom they deserve.
Basically. I can’t be me.
But I cling on to the hope that God will get me through this. That someday I can feel like myself again. That someday, I will get used to the pain of being without Santana. That someday I will find a new identity. That someday I can breathe without reminding myself to. That someday I can smile and recognize all Santana did for people in his short speechless life.
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August is Arizona’s Drowning Impact Awareness Month Purple ribbon Campaign. The purple ribbon represents the awareness of what the impact of a drowning has on the family and everyone involved. And trust me… I am WELL aware. I have been impacted.
I was asked to speak again this year. AND WHAT AN HONOR IT IS!!!!!! My story changed from 2 years ago. But the story line of water safety and how life could have been different with safety measures in place. I am excited to go speak. It will be Next weds the 30th at Phoenix Children’s hospital.
Univision came out and did an exclusive interview with us that they will be putting up this or next Saturday. Jett really stole the spotlight. I was so proud of him and all he had said to the reporter.
They always have a display set up at Phoenix Children’s hospital for the month of August. Santana’s always had a stuffed lion for his lion video. Chicken nuggets cause he loved those. and a football because he was built like a lineman when he was born. Also in that display is a letter. Mine changed this year. And I thought I would post it here for you to see.
When you hear a phone ring, you never stop to wonder if this call is going to change your life. You anxiously answer it before voicemail gets it. But when you answer and hear a frantic voice on the other end of the phone and put together that what they are trying to say is that your son fell into a pool… you all of the sudden forget how to talk in complete sentences. You don’t stay calm. Your heart begins to race. Your head begins to spin. You can’t walk a straight line. Trying to gather the information but everything outside your mind sounds like Charlie Brown’s teacher. At least for my husband and I, that was what the phone call December 16th, 2006 was like. We hung up not knowing if our son Santana was dead or alive. We cried. We screamed. We prayed. We begged. Our son survived. God gave him back after 45 minutes without oxygen and 30 minutes cardiac arrest. It was an answer to our prayers. But maybe we didn’t pray specific enough. Just because he survived, doesn’t mean that he got to live.
Santana didn’t get to play T-Ball like his big brother. He didn’t get to run in the jingle jog at school, like both his brothers did. He didn’t get to jump at BounceU like the other kids. He didn’t get to tell me if he liked something or not. He never had a chance to get a cavity due to sugary, tasty treats. He wasn’t like the typical boy his age was. He couldn’t make decisions for himself. He couldn’t swallow or clear his airway. He couldn’t talk. He couldn’t smile. He was trapped in a body that didn’t work.
Santana was fed by tube feeding formula. He wore several orthopedic braces to keep him straight as possible from his high tone. He had 6 spinal surgeries. Fought MRSA and other infections in his back. He had Chronic and Restrictive Lung Disease due to his compressed lungs from the severe scoliosis. He was always at risk with every little cold or hospitalization.
But he also fought and fought hard. He made it through things so fast. He never complained. He may not have smiled but he was always content. You could see it in his big brown eyes that he just enjoyed life. He spoke without a word. He touched everyone’s heart that met him. There is something about his sweet innocence. He was loved by many, including the students of Weinberg Elementary. He made great strides with oral motor. He also learned communication through the iPad with a 4 choice panel and a switch. Santana got to make choices. He decided how he wanted to play. All because he had a team of nurses and therapists that fell in love with him and saw potential in him that doctors didn’t want to take the time to see.
While this new normal was difficult to adjust and live day in and day out. I would take every second back. Because as of Easter (4/20/2014) Our life was flipped upside down again as he took his last breath wrapped tight into his mommas arms. I spent 7 years wanting him back to how he was before the accident. And now I spend my nights wishing for him back and to never beg for how he was.
The truth of the matter is, I lost my son twice. Santana I gave birth to died 12/16/06. I was given back a loving and fragile boy. I was trusted to take care of what was left. By the time I learn to accept this new life and all of his disabilities, he was taken away from me again. But this time I don’t get him back. He is gone. No cpr, no machines, no medicines could possibly bring my boy back. I know this for a fact because I had to pour a shovel of dirt on his tiny white casket after it was lowered into the ground.
While influenza, c-diff, and influenza pneumonia is what he was diagnosed with in the hospital, his death certificate made it clear that drowning is was killed my son. Because there was no barriers and constant supervision, my son died at an early age of 9 after fighting over 7 years to take his next breath.
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This is my first post since I watched my beloved son, Santana, be lowered into the depths of the earth we walk on. I could do a whole post of how I am feeling but for now I want to write about his funeral for those who were not able to attend.
I didn’t know what to expect. From Easter Sunday to the following Saturday that we called his Celebration of Life was a whirlwind. It was basically planning a wedding in a week. You have your place, your music, your slideshow, what you want said, your scriptures to be read…etc. etc.
We didn’t want this to be a sad event. We wanted to celebrate his entry into eternity with Jesus. We requested everyone wear Superhero shirts to represent the Superman he was or purple to represent the Drowning Impact Awareness color. Trust me… we were CERTAINLY aware of what impact a drowning has on a family. We said to bring a purple balloon to release at the end of service. I thought many had forgotten. Until the first time I turned around during service and saw the huge stack of purple balloons in the back of the prayer pavilion.
That is right, we used the Prayer Pavilion for his service. It is a BEAUTIFUL glass building built into the mountain. The view is gorgeous. At night it rotates colors and lights up beautifully, kind of like his hospital Phoenix Children’s.
Before the service started, wind was picking up. As I sat there gazing at him in the casket, one door in the front flies open then shut. Then one in the back did so 20 seconds later. We laughed cause it was as if Santana ran through there. They locked the door so that wouldn’t happen again. I guess Santana wanted to show us that he was still there. He ran circles around that glass building. The yellow flowers off the Palo Verde trees circled around and around. And just like other times in his last day, the skies opened up and my Papa in Heaven shed tears with me. It began to rain. A beautiful desert rain.
I tried to speak at the funeral but LOCKED up when I turned around to see that there was standing room only and over flowing out the doors. I tried to speak but didnt’ want to forget anything so the ADD in me had me skipping around and I never finished my 3 points about the rain. I mention that there was 3 times during these last days that Jesus wept with us and the rain was so symbolic.
First time was Wednesday, April 2nd. It was a sunny day. This was the first day we talked to the hospice team. It was supposed to be a simple DNR talk that turned hospice pretty quick. We agreed to wait until after the 3rd xray. After they left I turned to stare out the window to the view of Phoenix. Only to see random rain clouds surrounding me. That’s right. God was right there weeping with me. He understood the pain I was just faced with. After a little bit the skies cleared out and once again it was sunny again.
The second time was Good Friday. It was a very gloomy day. It was just sad looking. I remember other Good Friday’s being like that too. And symbolically on Easter Morning after Santana had taken his last breath, it was EXTRA bright.
Then there was the rain at the funeral. But when I spoke about this and noticed it at the Prayer Pavilion I had no idea what was to come. By the time we got to the Cemetery in Mesa, it was SUNNY! There was no rain. In fact, the rain was gone before we carried his tiny casket outside. Everyone who waited outside with their balloons were freezing. It was unusually cold. But by the time we brought Santana out, the wind had stopped and it wasn’t so chilly.
Pastor Saeed who came down and did a BEAUTIFUL graveside service called it God’s wink. He wept with us but now it is time to rejoice. He is in the arms of Jesus.
I can’t begin to say what an awesome job James did. So often in this journey I feel so alone. I feel like I carry all the burden. I am doing it all. While I did do all of the physical and mental work for Santana in his fragile state, James didn’t shy away from pointing out how much I did and how thankful I was. But he didn’t just sit and do nothing. He had to keep us afloat. I lost myself when I lost Santana the first time.
He worked so hard to get us the things we needed and to keep us financially stable. It’s easy for me to think he just worked so much to stay away from it all. And maybe it’s so. Maybe that is how he dealt with things. But without all his hard work and dedication through all this tragedy, he would not have made it to where he is in the car business. He made it to the top of the service department and he deserves it. I am proud of him. He stayed focus even though he hurts too. He aches for his son too. He didn’t just lose his son. He lost his wife. He watched me slip away into a cave where my focus was set on Santana and his care. He watched me melt down. He watched me become someone I am not. So he deserves a good job. James survived and with all his strength, kept us all afloat despite adversity that came.
I was overwhelmed walking Santana down to the Hearse. The lines of people were overwhelming. The balloons being released were beautiful. I can’t describe the feelings that went through me as I saw those purple balloons sailing away into the heavens to celebrate the big party Santana is having with the King of Kings.
The line in our Police escort was amazing! The amount of people that showed up at the graveside service also was just an amazing shock. My little boy touched the lives of so many without saying a word!
I am trying to post the funeral. It is an hour long. I am not sure Youtube will let me post it that big. It was so beautifully put together by the media team. I just now watched the funeral for the first time. I thought I would be more of a mess. But it gave me great peace. It reminded me that I have so much hope because of my faith. Because of my belief in Christ Jesus. Knowing he is in Heaven free from any burden is freeing to my soul.
Often I post on facebook or instagram how much I miss him. Many respond out of the goodness of their heart that he is better off. I certainly know he is better off. In fact, often times I am jealous that he is strolling the streets of Gold beyond the pearly gates. The human part of me wants to hold him longer. The human part of me wants him to grip my finger longer. The human part of me miss all the chaos of appointments. The human part of me misses all of his nurses and care team. It is already fading away. His bed is gone. His machines are gone. His oxygen tanks are gone. Everything is gone. Everything is slowly becoming a part of my past. I know he will forever live in me. But I have to wait. I have to wait to gaze into those beautiful brown eyes again. I have to wait to see the smile I waited to see 7 years post brain injury. I Miss that smile. And I still have to wait. Waiting is the hardest. But I get eternity with him. this time away will be so short compared to the rest of eternity. and I yearn for that day!
I will begin to journal and write more. Because so much more has gone on in these last 7 weeks. I will continue this blog in perspective of what life is like after the loss of someone you love so much and your world spun around them.
I have huge thank you’s to give. That will be my next blog. But for this, I need to thank Pasor Luke and Pastor Tommy Barnett along with Pastor Saeed. You guys did a beautiful job recognizing my son! My hero! Pastor Jeff May and Shawn Henss did an amazing job on the songs. Pastor Jim Black did a great job organizing and setting up. I have to thank Gateway Fellowship for allowing us to use their Fellowship hall for the reception. Which brings me to Chick-Fil-A. I am so thankful for their donation to us during our stay at Ryan House and for our reception. WHAT A BLESSING!
And… Since it is National Best Friend day. I want to thank Annie. A non-fatal drowning tribe sister. She flew in from Oklahoma to support me (along with other near drown moms from Cali and Vegas). She did what I don’t know just any friend could do. She came to the funeral home to see him the first time with me. James almost didn’t want to go in, but came in with me first and then Annie came in. I am not sure I can name a friend that would go in that room with me and stand over my childs cold, dead body. I take that back… Gina would have been therewith me.But when Annie has a medically fragile child herself.. it has to hit close to home. In our community it hits us so deep. deep into our souls. Every kid that earns his or hers wings… we as moms take very personally as if they are our own family. I can’t thank you enough, Annie to listen to me cry. Listen to me when I just need someone to talk to.
Thank you Everyone for supporting my superhero. I can’t begin to express how grateful I am for all your help, words of encouragement, and holding me up when I feel like I can’t take another step.
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Many follow our journey on Facebook and Instagram. For those who do not have access. I come with sweet sorrow to tell you my lil’ fighter left his world from my arms straight into the arms of Jesus on no greater day than Resurrection Sunday! We were both sleeping peacefully. My arm around him and holding hands when he decided to run into the arms of Jesus.
I was up several times in the night feeling his chest. We all had a feeling he was waiting for Easter so after Midnight I was on high alert. When the nurse, Amanda woke me about 5:30 am to tell me he is gone. I remember looking at her and saying, No… I just checked him 20 minutes ago. Santana’s heart was faint but still going and he waited for me to fall back asleep to tip toe out of there.
Just like his life… He fought till the end. Thursday, the doctor in Hospice told the nurse that there was no medical reason for Santana to be there. He didn’t have air exchange in his lungs but his heart just kept going. Santana and God had a pretty good deal going on. Not only can we rejoice that Santana is running the streets of Gold on the day we celebrate Christ’s resurrection after dying for our sins, but we will always be reminded that God is still good and my testimony of faith will stand firm.
While I can rejoice that he is free of his wheel chair, orthopedic hardware and braces, and can FINALLY eat again… I am left with an emptiness that hurts so bad. He is my whole world. I breathed Santana. I have no idea what I am going to do with my life now that I won’t have nurses, therapists and delivery men coming to my house constantly. They will soon come and pick up his bed and equipment and the house will be quiet from machines and very empty.
While it was PURE torture the last 3 weeks watching him deteriorate into a shell, I found beauty in the fact that I got to lay with Santana day in and day out for 3 weeks. I spent more time with him than I have in a LONG time with no interruptions. Watching him slip away took a little pain off because I so badly wanted him to go and was begging him to go that last week. While he felt no pain and was in COMPLETE peace through the process… It hurt to see him dwindle away.
So badly I wanted who Santana was before the accident on 12/16/2006 and I missed his smile. That last week of not seeing his bright, Giant, Brown eyes made me evaluate what I have been missing over the last seven plus years. Because I was whispering, “I am sorry. If I could keep you and your broken body I would. I will never look back again.” I fell in love with Santana more than I EVER could have if he never became medically fragile.
My heart hurts. But it has been bandage by the outpouring of emails, texts, facebook comments and messages, twitter, and instagram love! There are over 7 thousand spam comments on this blog so they are hard to sort through. I am sorry if they don’t get posted or responded too.
I never knew a young, 9 year old boy who can’t say a word could speak VOLUMES into peoples lives. The stories I have heard has made me stop and think… Wow… He made a difference. There was certainly purpose in all of this and purpose that only the hand of God could have made possible.
The most exciting thing I heard today was the founder of Suzy Foundation was so touched by the story that she went and got a fence around her pool THIS WEEK! Santana will always be a spokesman for water safety.
I want to thank Ryan House and staff from the depths of my heart. I can not explain to you all how much they all meant to us during this process. They took such great care of Santana and the entire family! The boys did SO great those 2 weeks there because the staff opened their arms and treated them so good. I cried my eyes out leaving there because it was like family. It felt like home. I liked everything about being there. Not once did I miss home.
Also Chick-Fil-A was a huge part of giving to our family with several large spreads. They offered to do food reception too. Kim and Ann in their marketing department really poured into our family and gave, and cared, and gave. Simply amazing.
Amalfi’s Italian food brought us a big spread one night also! So delish!
Not to mention the TONS of friends who reached out and fed us. our friends who took care of the dogs and house. Our neighborhood rounded up and did an AMAZING job on our yard. I am pretty sure it has never looked this good.
Santana’s school rallied and brought 2 huge car loads of things for the pantry at Ryan House. Way to go Wranglers.
Our former principal and friend, Joe Walters took the boys for a day to hang out with his son and go see Captain America… then they ended up spending the night. That helped with a change of atmosphere for them.
Visionit Media is printing window decals to pass out at the celebration. Everyone is just stepping up to help.
Not to mention the VERY generous donors that contributed to a Go Fund Me account that a friend of our set up. We are going to be closing that account and start paying all our dues. If you are interested in helping out we encourage a donation in Santana’s name be sent to Ryan House or you can do it online here. We also request that in lieu of flowers that a donation be made in Santana’s name to Ryan House.
Celebration of Life services will be held This Saturday. All detail listed in flyer below. We request that you wear a super hero shirt or Purple to represent Drowning Impact Awareness… We are certainly aware. Also… Bring a Purple balloon as we will release them after the Celebration service. If you are not able to attend or live to far away, we encourage you to release a balloon in his honor about 11 am MST.
Thank you to EVERYONE who has been a part of this journey with me. You have blessed my family more than these words could ever describe. I pray many blessings back into your lives!
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Santana is going to prove his nickname. Lil’ Fighter is going to fight until his last breath. He is hanging on so tight. It confuses people who are watching this journey. So I am going to try and explain it as simple as I can.
Santana would not be here if he was not on round the clock Morphine. Without the morphine it is like he is suffocating. He struggles to take his next breath. They have him on a good dose that is keeping him breathing at a good rhythm. Although he is starting to do a double breath in to catch up.
They have also taken away his home meds and replaced with Ativan. They want that on board for when he takes the next turn because his breathing can be easier controlled.
This morning they made me turn off the Pulsox. They do not want us focusing on the numbers. Just him. Yesterday he was dipping down. It is hard to let that go because for over 7 years that has been his way to communicate with us. His heart rate is up? Oh.. he has a fever or uncomfortable. I don’t have that anymore.
I have been spending lots of time just laying and cuddling with him. It has been the best feeling in the world to just have him wrapped in my arms. We have been taking good snoozes together.
My mom says she can tell he knows when I am out of the room because he seems different. His breathing changes and he peeks for me. Any time I leave the room I tell him to wait for me. I don’t want to be out of the room and not see his last breath.
The doctor doesn’t think he is going to show much more end of life signs. She believes Santana will just decide to take his last breath when he feels it is time to go. Knowing this makes me never want to leave his side.
The last 2 evenings we had the pleasure of Shawn Henss come and sing worship with Santana. He was so bright eyed for him. I guess you can say he is living up to the name SANTANA. He loves the guitar. (and no… we didn’t actually name him after Carlos Santana) I will post the youtube videos below. It was simply beautiful.
The hardest thing for me was finalizing which funeral home and cemetery we were going to use. I felt that once things were in place that he will let go knowing I have less to think about in my sorrow. Everything is falling together nicely. Never had I imagined that there would be so many giving people to help with the financial burden of laying our son to rest.
We were going back an forth between 2 cemeteries and the choice was made for us when someone was so gracious to donate their plot to Santana. I didn’t ask if I could make mention of her name. But One thing I know. I am not sure I am as thoughtful to have ever even thought of that! It was such a kind gesture and helps us in so many ways. What a blessing. In such a cruel world we live, it’s nice to know there are caring people out there still.
Any money left over from funeral expenses will be donated to the Ryan House. Nothing we could do or give could possibly pay back what they have done for us in the last week and few days.
I have to say THANK YOU to WIENBERG Elementary that collected and filled up the pantry here at Ryan House. My mouth dropped at the amount of donations. It means so much that they did this in honor of Santana.
Thank you for all the love, comments, and encouragement. We read everything and it gets us through knowing Santana has touched so many lives.
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Usually it is Slow and steady wins the race. Unfortunately he doesn’t get to win this battle. But he will eventually win the ultimate war and be welcomed into heaven with his beautiful wings.
The last 2 days have been steady after a few scary moments. At one point he was breathing 4 breaths a minute. His normal is 22/24. He had some severe apnea in between. It is scary watching and waiting for his next breath. Then in the same day he went back to 30 and really struggling. His morphine has been increased and around the clock every 4 hours with prn doses every hour if needed. The goal is to keep him comfortable.
He is maxed out on 5 liters of oxygen. He has dipped to 79 on that but still comes back up and is 94-100% If I am gone long it seems like he is crashing down. But levels out if he is in my arms. He just wants to be in my arms, held. And that is where I want him to be. I get anxiety if I am out of his room too long.
Ryan House is AMAZING. I just don’t know how else to say it. They are a total blessing to me and I feel more comfortable going through this with the staff and volunteers. We have been here non stop and do not plan on leaving his side.
The school has been understanding to the boys staying with us. Jett is scared to be away too long. Which is totally understanding. But now that things are leveled… it’s hard for them to grasp it. I think they really think there is hope for him to turn around and make it home. A lot of people have written and told me they are praying for that also. I wish there was that hope.
I told my friend the other day that I would rather go through the ordeal of the drowning than this. But maybe because I didn’t see the trauma of him yanked out of a pool and had to do cpr on him. I saw him resting peacefully with a machine breathing for him. But then… I had hope. I believed he was going to wake up from his coma and be completely healed. But now. I have nothing. I take that back. I have the comfort knowing he is going to be free. Running in heaven. No more pain. No more suffering. He gets to be the little boy I always wanted him to be!
It is scary focusing on your child slowly slipping away and thinking of how much it will cost to lay his precious body to rest. A friend on facebook had started a go fund me page to raise money for the funeral. If you would like to donate to the paypal account, you can do that or follow this link.Santana’s Wings
Because this is taking too much time away from Santana, I am not going to upload any pictures. You can see them on my instagram account if you Click Here
We can not begin to thank you all for the outpouring of love that you have sent us. What a blessing each and everyone has been in our life. All the food brought to us. The goodies. Ryan House volunteers are making homemade meatloaf dinner for us right now. My favorite. I can’t believe the outpouring of love. Chick-Fil-A has brought 2 huge spreads and will be donating to the house from here on out once a week. I am so glad our story will bless Families to come! There is so much I am missing. I love and thank you all!
I know this is a quick update. The best updates are found on instagram and facebook because it is easy and simple. I have know idea what happened to his public page. It has been blocked public for some reason. …. I JUST FIXED IT… WOOOOO HOOOOOO!
We hope that you understand that we have cut back visitors because time is slipping and each moment is so important with him. I do not want a second spent away from him. I love him so much. He is my world. My world is spinning off axis.
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I start a new post and all I can do is stare at my iPad. I don’t know what I can say to make you understand what I am going through. Especially when I myself can’t comprehend it all.
I’ve gotten dozens of messages asking what’s going on. Besides what has happened in previous posts… I will try and simplify the best I can to where we are now.
Santana was really ill with influenza b. he also had cdiff on top of that. He is already really medically fragile and so it is much harder for his little body to fight sickness off.
I wanted to put a DNR in place so he was never put in a position of being on a vent and we as parents having to make the decision to turn it off or not. When the hospice doctors came in they discussed further and explained what hospice is. Because he is on his life decline, we felt that was the best option for him and support for us as a family.
What exactly does Hospice mean for Santana?
It means he will no longer go back into a hospital. It means we have nurses that come and check on him through out the week. It means we have a doctor on call that will do house calls. It means no more iv. No more X-rays. No more blood work. We can still treat with antibiotic. We do whatever to make him comfortable.
The plan was to leave the hospital enrolled in hospice. Come to Ryan house for a few days and then head home Monday. The pediatrician highly suggested Ryan house first. As a hospice patient…the hospice dr. Said it is what we want. We can go home if we want. Ryan house is like home to us. The nurses know him well.
His X-ray shows that his left lung is still collapsed. His blood work looks normal. So this just shows that his body is shutting down.
Coming to Ryan house was the best idea. I have my own room that is better than hotel rooms I have stayed in. I went to try to catch up on sleep but woke up at 3 and could not fall back asleep. So immediately I came in with Santana. He had a fever. I stayed in there with him. He got rotated on his right side and that’s when trouble started. He had a really bad cough. And then coughed with every breath like he was struggling to breathe. I rotated him back but he continued to struggle.
At that point he received his first dose of morphine 1mg. The purpose of the morphine is to trick his mind into relaxing his breathing. Not cause he is in pain.
It had to get bumped to 10mg. He can have it every hour but I am keeping it until he starts to work harder.
This morning i was sat down to a conversation I didn’t expect but expected. I don’t know how to make sense of that… But it is clear to me. Anyway… Most of it went over my head but it has something to do with a medical examiner. And a suggestion not to leave to go do taxes Tues night.
Also… We are not leaving here. That is what you think it is. They think he is going to decline fast just by the change of condition in 24 hours.
So I sit here and I write feeling numb. I don’t know what or how to feel yet. I can’t imagine life without him. I can’t believe that he is going to be free again soon. He is going to get that healing I always prayed for. Unfortunately not on this earth. Not for me to see…. Yet.
I want to thank the visitors that have come and put a temporary smile on my face. I want to post all the pictures but right now I need to just finish up and get off to be with Santana.
As I was writing this blog I was pulled aside. I had to talk to a medical examiner about what will happen but mostly they needed history of the accident. Luckily they decided against autopsy.
Then a book was handed to me. In that book was a list mortuaries. That is when it all came real and the numbness wore off and a list of emotions flooded my mind, heart and soul. We are in Santana’s last days. The hardest part was letting the boys know what was going on. So much for them to take in at such a young age.
So many people are asking what they can do to help. I don’t even know. I am just overwhelmed. But one comment I need to stop is… He will turn around. Stop. Please. If the doctors thought he was going to turn around,they would not have us picking out where we want his body to rest and talk to the medical examiner. I can only hope for that. But it hurts to read that over and over.
I will post pictures later. This is all taking too much of my time away from my family. Please follow Instagram for photo updates.
I appreciate all the prayers and friendships through this journey. And no matter what. I still believe.
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After tonight it marks a week of being at Phoenix Children’s Hospital. We are on the 8th day of Santana just staying asleep. He can be woken but long enough to give a dirty look and go back to sleep.
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Yesterday they needed to put a new iv in because he blew the one in his foot and got phlebitis as a result. Which is an inflammation of the vein and is known to be painful.
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His fever has been staying steady at 100/101. His o2 is turned down to a liter and he seems to handle it.. Although deep belly breathing.
His skin is extremely hot in some areas and ice box cold In others.
Yesterday was the second hardest conversation I have ever had. The first was about his condition after the drowning incident.
The palliative care/hospice team came in yesterday to discuss a DNR that I requested to put in place. It is something I have wanted long before he got sick. I don’t ever want to have to make the decision to turn a machine off that is keeping him alive.
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That talked turned into hospice talk. I had no idea what exactly hospice is but I thought it was when you put them in a facility and let them die. Apparently it is keeping him comfortable in his own bed. We will no longer use hospital or emergency services. We will have a care team in place and a 24 hour triage nurse along with on call doctor.
He can still get treated with antibiotics. Orally. Still can use oxygen. But there will be no more iv, blood work, X-rays. Nothing.
If he really starts giving up the fight, we have the option of going to the Ryan House. Either place… At least my kids will be able to be involved. As long as I am here… They don’t get to see their brother.
So back to the talk that got us into the hospice mode.
Santana’s weak body is trying to fight off influenza b, c-diff, pneumonia, phlebitis, hot and cold patches on skin, break down on the tailbone, belly breathing hard.The dotors say that these are signs of end of life. It is possible the central nervous system is shutting down.
After the doctors walked out I turn to look out the window and wonder where the sun went. Out of no where,clouds and rain circled the valley. I said even God is weeping with us.
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I was thankful James was there for that talk. If I were to. Be left alone after that. I am not sure I could have breathed without gasping for air.
Although… It is possible for him to recover and turn around. And if he does go back to a normal baseline for him… We can always reevaluate and pull him off hospice care.
This is so hard. It hurts to think that there is a chance my boy won’t improve.but when I think of all he has been through in the last 7 plus years… We were blessed to have him at all after December 16,2006. And again after his vein and artery were sliced during surgery in 2010. Through all his back surgeries, including MRSA down to the bone and his spine being exposed and taking 5 months to get it shut. The. Again last year when an infected rod had to come out. This kid has beat the odds so many times.
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If he wants to let go… I have to let him. He has fought so hard and stayed around until I have come to peace about his well being. It will be hard, I will cry for days, I will feel like I lost myself. But I can move forward knowing he is whole again and wrapped in the arms of Jesus.
As of now… We wait. He has an xray ordered for the morning. Depending on what that reveals will depend on our course of action.
Many people have been asking how I a feeling. Right now. My answer is numb. Maybe a little shock. But mostly numb almost emotionless as I process all this.
Please pray that God will take the next steps in his hands to keep him comfortable. Thank you all for your support.
I also want to thank the visitors who have come to see him and break the silence for me. My neighbor friend hung out for a while as we pigged out on yummy cupcakes. Not to mention gave me some stellar footie pajamas!
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Santana’s Sat. Nurse Chris came to visit.
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Even Santana’s awesome teacher came to see him and hang out for a bit.
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and this phone app stinks. I will hold off pics until i get home. You can view pics on our instagram account. Thanks for understanding.
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Santana was waking up for longer periods by the evening. I thought fever was down but I found out they have been doing Tylenol around the clock.
James brought the boys up so I can go down and eat with them. I miss them so much. I miss my family together. Early this morning I woke up to santana working to breathe. His respirations are 38. His tummy is pushing in and out so hard. And his nares are flaring. Fever is still down but his hands are now ice cold.
His surgeon has popped in everyday to check on us…Although we are not using his services this stay. Today he gave me a few big hugs as we discussed some deep things. He said so much good I am about mother I blushed. He also said it is pretty embarrassing that I took such good care of him for 7 years without any bed sores and now he gets one in the hospital. He’s making them get a waffle mat. He’s just awesome and it’s comforting to have someone here to look out for our best interest. Even without getting paid a dime. I love Santana. I can’t explain how much he is a part of me.
If he is suffering. I am suffering. I feel numb. You can see his breathing on instagram if you click the link on right sidebar. Or link below. But this is tough using my phone so I can’t make promises that the links will work.
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So much has been going on. I don’t know where to start. First. Excuse my writing. I am attempting this from my cell phone.
I have been updating via Instagram. Link in the right sidebar.
Before I get into now. I wanna state that last month we were in the hospital for 3 days due to excessive seizures. In the ER alone he has 30 seizures under 3 hours. They had to do an iv medload to knock him out. Needless to sau, we are on a new med and making improvement.
Soooooo… first. Tues… like last week the 25th… His o2 was low until about noon. And did good the rest of the day.
Weds. He slept through school. Slept through therapy. Had a fever of 100.8 by the time the nurse left at 4:30. By the end of the night he was 103.5.
Thurs. He stayed home and rested with the nurse. I had to leave work to pick Jett up from school because he had a 101 temp. They were set to see doctor at 1 on Friday. Thurs. Night he was pretty junky needed suctioning every half hour. By 1 am I needed to put 2 liters of oxygen on him. Then I turn around and was getting Jett meds for his sore throat.
By 3:30 santana looked miserable. He had 105.6 fever. That was not a typo. I called non emergency to get him to Phoenix Children’s.
ER came back with bloodwork is normal. Chest xray shows pneumonia. Do you want to be admitted for iv antibiotics or go home on antibiotics. Normally I am the first to say… GET ME OUT OF HERE. But I said do not send me home. He still has a fever and I don’t want to be back here.
Saturday they decided to do a swab. He came back positive for influenza B. And he tested positive for the 4th time since Sept. For Cdiff. This time it is rancid! And the pneumonia.
Treatment didn’t start until Sunday night. They decided Tamiflu… Although it may be too late to start. And Oral Vancomycin for the C-diff.
Santana is wakeable but goes back to sleep and not awake for more than a minute or 2 at a time. After almost 48 hours of antibiotic, he really hasn’t improved. Just super tired. Super junky. And working to breathe.
Last night he gave us a scare… including the nurse. His feet were ICE COLD. Coldest I have ever felt. Not much of a fever. Even though earlier he had 104.9. But their fear was sepsis. Needless to say. Blood work came back normal.
Basically this virus is kicking his rear end. We are finishing up day 5 and nothing has changed.
So we just wait. We wait and see how he does.
Please click on the pictures in my Instagram account (link on right sidebar or copy and paste link below) to read more details. I will try to post more. It’s tough with my phone.
Please keep him in your prayers. My prayers have been giving him up to God. Whatever happens I will accept. But we all know this kid is an AMAZING fighter and I have to believe he is going to turn around and go I to beast mode out of this!
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