Thursday, February 4, 2016

Oliver's 7!

So 7 years ago today I went into labor after a pedicure and a castor oil root beer float. I did what I had to do. If he didn't come before Friday the 6th I had a c-section scheduled and I didn't want a c-section. So 7 years ago I, for the first time and with my third child finally went into labor naturally at home, well as natural as I could manage.
I didn't really want him to come out. I knew it was my last pregnancy. I knew life as we knew it was gonna change. But I didn't want that c-section and I heard that you really can't stay pregnant forever.
After a fairly quick, painless (haha, just kidding) labor at 12:13 AM on February 5th 2009 Oliver Isaac Steven came into our world and changed everything. For the best!
Here we are 7 years later and ever since December 26th all we have heard about was this day's arrival. I just emailed his teacher these words "as I am sure you are painfully aware, tomorrow is Oliver's birthday. What time can I bring snacks" She emailed me back "Thanks for the laugh". This boy has made his birthday known to anyone and everyone he meets!
Just last week he took his gift request to our friends/neighbors house and showed him what he wanted on Amazon, walked away and came back a few minutes later and asked, "so did you buy that yet?" It was something for $150!
His guest list is huge, his gift list is huge. I wish I could say he is one of those kids that said instead of giving me gifts send all the money to an orphanage. And maybe we will get there. But not this year. Not at 7.
I had another friend ask me to clarify his gift as he requested to her daughter. I clarified and she said thanks, you never know with Oliver, he dreams big :) and that got me right in the heart, in a good way. He does dream big. He does everything big. He lives large and he is only 7.
Sad things break his heart, funny things make his sides ache, owies hurt him more than they probably should, he lives life to the fullest and almost always with a smile. Unless someone or something died in a movie. Or he fell. Or someone hurt his feelings. Ha! He is just one of my most favorite people in this world.
He has it all figured out at 7. He is a quirky kid, he isn't a "boys boy" and probably won't have a professional athletic future, but whatever the future does hold, it's big.
He loves his family and it is so obvious. Last weekend we were all walking around an outdoor mall area and we saw a bunch of princesses standing outside a restaurant  (I am serious, like Cinderella, Jasmine, etc) and I said "Oliver want to take your picture with those princesses?" He said "No, I don't like princesses, except for Lily. I love Lily" he genuinely thinks Lily is a princess. I remember him saying a very similar sentence when he was 4 and he still doesn't waiver from Lily's princess title.
Also last week during football he was on the bench with a couple other kids, those kids were jumping over water bottles and Oliver said to the kids jumping over water bottles, "My parents didn't pay good money for us to jump over water bottles". He's that kid. He may never be super popular sporty guy, but he sure is funny. He loves me to read to him every night and he loves to read to himself. He loves school and he loves his friends. He has more girl friends than boy friends but plays great with everyone. He is just easy to be around and so easy to love. I can't believe tomorrow he will be 7. My heart aches a little when I see baby pictures of him. I just can't believe how they just keep growing up. {Sigh}
Happy Birthday sweet boy, I am so glad God gave us you!











Thursday, January 28, 2016

I'd Always Choose You

I'm waiting for the fog to lift. Or maybe I am waiting for my stomach to settle. I am wondering if I will wait the rest of my life for those things.

2016 has come and it didn't get the memo. Sadly several stars names have been written all over social media with their too early dismissal from this world. And although it didn't make the news feeds of everyone, my news feed was filled with the loss of not one, but two little girls who share the same genetic mutation as our Lily girl. CDKL5. Their names might not have made the national news, but their lives were great and they fought harder to live than they ever should have in the mere time they were with us. Harper, 5, and Sorrel, 15 months, both left this world this month and it's been shocking and well to be honest, I don't have the words because I don't have the comprehension.

When Lily was diagnosed it meant nothing more than finally a name. We spent 6 years not knowing and a name said this wasn't my fault. It meant by pure spontaneous luck, a gene wasn't made appropriately and it had devastating effects. How devastating? We didn't know, we only had a handful of other cases to look to. Kids seemed to be similar to Lily. OK we have a sweet kid in a wheelchair with seizures that we will never control, we already have that. We already knew that. It sucks, but death wasn't on that list. Death was never on the list.

Our plan is to get the other two to college and careers/families of their own and Andrew, Lily and I will ride off into the sunset in a handicap accessible RV and then the story ends. That's it. We all live together forever in an RV. The story ends there because the thought of loosing her is unacceptable and imaginable, yet on the other hand her loosing us is the same result. So no one looses anyone. We live to our 100's and then we all fall asleep together peacefully.

But my rose colored glasses are getting foggy with all this reality surrounding me. Children are dying and that just seems so incomprehensible to me I still can't wrap my brain around it. I realize I can't change the way we go about life. I can't hide under the covers (although some days it is tempting) I am just lately feeling like I am on heightened alert. It's like I know a bomb can blow at any minute ruthlessly destroying my entire world, but it hasn't, there are no warning signs so I am going to try not to think about it. And if I do think about it, I can be more intentional with my touch. My words. My love.

I want to hug those mama's (all of them who have experienced this loss) until I can't hug them any longer and some how take away even an ounce of their hurt, but I can't take anything away. It's an unfix-able thing; loss. It's unimaginable until you are there and then that's it. Unfix-able.

I loved the book (and movie) The Fault in our Stars, Hazel Grace was so afraid for Augustus to get close to her because she was, as she said, a ticking time bomb. She wanted to protect him from being broken by her but he didn't care. Augustus wanted to love her regardless of the fact that she could die at anytime. The book was devastatingly tragic and ended different than we all thought it would at the start, but it was so beautiful. Or as Glennon from Momastry would say brutally beautiful - "Brutiful".

Sound familiar? Kind of like life right? It can be so devastatingly tragic and how often does it ever end how we think it would. But it is such a beautiful ride. It is filled with laughter and tears. Heart fillers and heart takers. Love and indifference. It's messy, it's sweet, it's harsh and it's filled with special people that show us unconditional love that we would take the heart breaks that we may endure because their love filled us deeper and made us better than we ever could have been without them.

So regardless of all this, all this hurt, all this risk, I would choose Lily any minute, any day, any hour, any world. I would always choose her.

Being Lily's mom I get to see life in a way so many others don't. I get to experience life in a way so many others can't. I am lucky to be her mom and I would, no matter what, have never chosen anything different. Time bomb or not.




Wednesday, December 23, 2015

What hurts the most...

Last night in the car Andi I were talking about maybe going on a hike if the weather clears up this nice long weekend we have ahead of us, and she said "oh yes please!" and I then said "we would have to see if Grandma would be able to hang with Lily while we go" and that's when she dropped the truth bomb. The ones I like to avoid in order to just breathe. She says "that makes me feel like crying, always having to find someone to watch Lily so we can go on hikes and other things she can't do. I just wish sometimes she was able to do everything we do". And there it sat. That bomb of truth I keep circling around because if I keep things running smoothly and manageable and busy, I don't have to focus on that deep hurt that sits in my chest. The one that has been there for 13 years and 4 months and will never ever go away. 
I do a good job at accepting and loving and dealing with what we have. I adore Lily and accept her and know I would never be the person I am if she never was the person she is. Those are things I know. Those words are my Life Song. BUT I'd be lying if I said that her daily suffering didn't cause an enormous ache in my heart. The thing that always leaves me yearning. The restlessness that never ceases. The gaping wound I keep bandaged so well others think it must be healed. 
I told Andi, "I know.. it's just our story. Our family."
She said she knew and then quickly changed the subject and I grew quiet as we drove home.
It's funny how as time goes on the things I crave to experience with Lily has changed. I still crave conversations with her. The "typical" mother daughter relationship I will never know with her. The fights over Iphones and friends and clothes (thing I know would drive me insane at the time, but still feels such a loss to not have) but what I think I crave most now is the sister relationship my girls don't have. (I know people will say but your girls have a great relationship and they do. That's not the relationship I am talking about) 
I see sisters and have an intense craving for my girls to experience that bond in the usual way. I have a sister, my sister has two daughters, most my friends have multiple girls and I watch them and I am so jealous. And I hate to be jealous. I hate to waste any energy of jealousy, but when I am being honest, jealous is the word that comes to mind. It's like the whole world is eating a hot fresh Bosa donut and you are gluten free. You watch them take that bite and you are starving and you can't do anything but watch them lick their sticky fingers and pat their bellies and you kinda want to hit them over the head with your gluten free donut, which of course is as hard as a rock. It's like that exact moment times a million that never goes away. And I never want to hit those sweet sisters I see. I just wanna yell at God a little. 
But here is the deal, when I do yell a little at God (and I do), he hears me and it's in those moments where I don't think I can take another step, he carries me through. It happens every time I loose it and he listens and he lightens the load. And then I feel a sweet release and know I can pick up again and move forward again. Off to my hamster wheel till the next time the truth bomb is dropped.
I don't know if it's healthy to run til I break. Probably not. But I am not writing this as a self help post, I am simply sharing how my heart breaks and how it can feel a little better. Having hope is the only way I know how to survive this life we were given. I have so much hope in an eternal life and I have a vision of Lily and I on a bench one day in central park talking and laughing like we were never able to do here on earth (yes my heaven is late spring central park - to each their own) and knowing I have faith in God, I have hope in our eternity. And that is what moves me forward every day with a sense of joy some others may wonder how it is possible. So yes I hurt, hard, I hurt hard. Yes I feel sucker punched moments, but I also feel joy and I feel hopeful when I know who to hand that hurt to.

C.S. Lewis said "I learned now that while those who speak about ones miseries usually hurt, those who keep silent hurt more".
I share my heart break because it makes it hurt less. 

Merry Christmas - Cheers - 

Some may like a little cheerier Christmas posts. But as my Andi would say #sorrynotsorry 






Monday, November 2, 2015

Updating

Goodness gracious I am a horrible updater!
Here is the low down on miss LilyAnna Blu.
Since surgery in April she was hospitalized 2 times and was in the ER 3 times.
She has dealt with constipation, two UTI's, a virus and then the virus settled in her hips and caused inflammation that caused great pain. All mostly resolved now.
She had 2 wonderful stays at the Ryan House whom we are forever thankful to the parents who made that place happen.
She has weaned totally off Sabril, in the process of weaning Triliptal and we are trying a CBD oil that is legal in our state, but not really showing much improvements of any kind. I am reading you have to give it time and tinker with the dosing. We aren't giving up, but I am loosing hope that it is the miracle we are seeing all over the news and social media, to us anyway.
Good thing is I have a protected heart. I have a money back guarantee type of surrounding so when things we are told will be that miracle and they never are I am not crushed like I used to be.
I am not crushed because while it may seem I have lost hope, I haven't really. I just lost hope in things that will never be.
Here is the deal. If Lily never goes a day ever again seizure free. Basically if for the rest of her life she has daily seizures, we won't love her any less. Will we do everything in our power to try to make her life on earth more comfortable? Yes. So I will always be willing to try something with the slightest hope of making a change for the better in her life, but I will never let those results crush my soul again.
I have spent years with soul crushing, hope sucking results from things we thought would be her saving grace. I won't go there again.
So yes we will give that study a try, give that new med a shot, we will try that 100% all natural herbal option (all under the care of her neurologist of course) but my hope will never be in a product. A substance. A remedy.
My hope is and will remain in God. Bad things happen. Pain can be crushing, but God is still good. We are still good. Lily is perfect. Created in my womb. God makes no mistakes.
I have learned if we live on the avenue of God makes no mistakes than we really can stand firm and safe knowing and trusting in that.
Andi is in a really uncomfortable state of pre-teen hell and scaring the living daylights out of me in fear of the teen future vastly approaching. She is also in volleyball and will be in The Hobbit at a local theater later this month. She is also super sweet and wonderfully helpful. So it's a give and take. Mostly feeling like taking lately, but we had a rough morning. You know the kind where I beat her and kicked her and told her to walk to school in the below zero temperatures. Actually none of that happened. I asked her to BRUSH HER TEETH. She did and stormed out of the house and walked to school (gasp) ever so mad at me in 60 degree weather.
Oliver is in karate and basketball. Oh and hip hop. They are both taking an after school class that they are loving. It's hip hop. They were thrilled to have been taught to whip n nae nae by someone other than their mom.
I am loving the extra hour after school. Shh. revert back to the whole tween crap for reasons for that sentence.
So there's my update. We just had a safe, happy and healthy Halloween.
This all should suffice as our Christmas Card.
Halloween 2015 Merry Christmas





Thursday, August 13, 2015

Give a Kid a Cookie

It is pretty rare that I read a book and I say holy crap, that is my life. Written from a person who is spying on my family. But it happened. It actually happened a long time ago before I even knew it was foreshadowing my own life. But it happened and I guess it probably happens to a whole lot of tired mamas when they read Give a Mouse a Cookie.
I am sure you all thought I may be diving deeper here with a start up like that, but I am not.
I am a tired mama and my kids are like mice with cookies, that ask for milk, then of course needing a straw.... except one kid will want water with ice, the other will want the milk. The other won't ask for anything because she is non verbal but I will feel bad that she isn't asking and I will make her a glass of chocolate milk.
And then we will go from mom needs a little nap to asking them to just be quiet and color for a bit, but then we will need to find tape to hang up that colored art work. And mom never gets a nap. And those kids quit that nap crap all when they were like 2 so yeah. No rest. No naps. Not even ever.
Oh that book is so true. It was true when they were toddlers and guys it is true when they are school aged kids. I can only imagine it will be true as high schoolers and maybe even into college.
I love my kids! Dearly! But man. They are exhausting.
I work. I have to. I always have. They know this. This isn't something new that just happened. I have always worked. I got 1 fortunate year off when Oliver was a baby and worked from home, but I have always worked. Even when I was home, I have always worked.
I am however fortunate to only work the hours they are in school. I take them to school, go to work and am there to pick them up. And because of those things they get to do things like karate, basketball, volleyball, wear clothes. Eat food. Sometimes even get stupid crap at Target when mommy is getting her stupid crap there too. I am not perfect people. Shopping soothes me.
But even though I am there at drop off and pick up, they are often upset that I can't eat lunch with them at school every day.
I wish I could sit and have lunch with them. I love that they want me there, I really really do. But I can't do that very often. It is a special treat when I can make it work, but then they both have the tendency to cry and want me to take them home with them after lunch. Sigh. Not winning. Am I ever winning?
I realize though as much as I relate to this theory and see this in our own children, I know this is how I operate as well. It's how we all operate right? I mean Laura Numeroff didn't just come up with this idea by following my future family around back in the 80's. She probably had children of her own that had this empty hole inside of them that nothing ever satisfied. Laura herself probably did as well. She didn't stop at that book she went on to make an entire series of books all following this theme.
So sometimes I end my night exhausted and know tomorrow will bring me the same things all over again until they grow up and move out and move on. Except Lily, she isn't a jerk and won't move out on us. But then they are gone and I will be like ...hey want a cookie?. Please come home and have lunch with me. I will pour you milk. And ice water. And give you a straw.
It almost seems unfair the way this life cycle goes. Here today driving us crazy, gone tomorrow driving us crazy.
We all have this insatiable feeling in us, it starts as children and some may die with it inside of them. I like to think I am working on this. I am trying to fill myself with meats that only God can provide and fill me with. I desire contentment and want that for our kids as well. But it's hard. We always see the bigger and better and finding the comforts that lie within our own lives is sometimes hard to find but I am working on it.
We are all works in progress. We are all thirsty and want milk with our cookies.
Praying to God for that thirst to be quenched.

Tuesday, July 28, 2015

Spinal Fusion Post 5

Goodness I hated last post. I couldn't even go back to re-read and edit. It was just yuck to remember that day/weekend. I hated the feelings it all brought back, the images of her struggling for every breath. Remembering Nurse Megan's sad face. I can handle my own sadness. I can breathe in and out and survive really hard things, but when our sadness is shown on other peoples faces I just can't. It's why I never watch seizure videos friends post. It's why when I was at my friends house and watched her daughter seize I went looking for a hair brush for her because watching my own story unfold in other peoples lives is just something I can't do. Well I can do. I can do anything. I just hate it. I hate how much it hurts. So that day, that weekend really hurt and when I saw on other people's faces what we were feeling it just made me want to pack it up and walk out the door. Not that I ever would. Ever. But sometimes you just can't imagine taking one more step forward and thank THE GOOD LORD when I can't take those steps he carries me through.
So forgive the last post. I just really didn't write like I like to. I imagine it didn't read like I like my stuff to usually read. It was just really hard.
And then I think of parents who watch their kids struggle for breath regularly. I think of the families I know with kids with same diagnosis or very similar and they know all the ins and outs of breathing troubles and yesterday I read the blog Gwendolyn Strong Foundation blog, one I have read many times in the past, and read of Gwendolyn looking at her parents and asking for forgiveness to finally just let go and they gave that to her and she then peacefully passed away and I think oh my heart. Oh my breaking heart. This world that we are so a part of. So entwined with. This special needs community just hurts most of the time. We have been spoiled to have lived 12 years with Lily and only have a couple times of any respiratory stuff that never really was serious at all. My sister with her kids with asthma has witnessed more than us prior to this surgery. We have been blessed and that is probably why it hurt us so much. It wasn't expected. And not like expectations have ever been on our side or in our favor (whose ever really are?) but still. I wonder did I take that all too hard? Am I over internalizing? It's not like I don't over internalize my shopping list, so yes that answer probably has to be yes. But it's who I am. Over thinkers anonymous would be a good meeting for me to think about going to. I think was it all really that big of a deal? They said the surgery was next to open heart the biggest surgery a person can have and it was done on a child with severe special issues. It was not out of norm to have complications. But we aren't just a number of statistics. We were parents scared to death of a surgery that we had every right to be scared of. I had read prior to surgery some parents saying the worst part of the surgery was the anticipation before the surgery and I thought oh phew, I bet that will be us. But it wasn't us. The anticipation was nothing compared to the real deal. And although I know she is straighter and will be so much healthier in the long run, I am still not in a place that would be like oh yeah I'd do that all over again. I don't know if we ever would.
But I digress.... after she was re-intubated we started to just work on one small goal at a time.
It was one day she needs to pee and poo and get the fluids off.
The next day was she needs to get a chest tube to drain the fluid around her lungs.
Next day was extubation (scary scary scary, but awesome awesome awesome) and straight to bi-pap
Then it was PT visit (less scary than it looked) and sprinting 4 hours off the bi-pap.
Then it was room air during the day and bi-pap at night.
Try to eat.
It was that trying to eat that we didn't get sent home that Friday of that week.
We'll never forget that day after she was extubated and we brought her Tobii in to her and sat her up and asked her questions and she immediately and consistently would say I want to drink chocolate milk. It takes her two different pages to get to ask for this and so we knew she was incredibly deliberate with this request and the awesome thing was our team. Oh man our team was incredible at the PICU at PCH. Before rounds they would say Team Lily is meeting. I mean seriously, how incredible is that? They were all for her recovery and it was so evident in everything they did and said. So when we said she wants chocolate milk they were like get speech in here ASAP! And I am not kidding within the hour speech was in with chocolate milk and some other things to try and Lily drank that chocolate milk like it was the last chocolate milk on earth. Then she coughed. And coughed and speech said for the weekend she will need to stay on NG tube and we will reassess on Monday. That was disappointing to me because she had come so far that week. Sunday she woke up, Wednesday she was extubated for the final time, by Friday she was sitting in her chair for hours at a time and talking cruises around the unit with no oxygen at all, we were so ready to break out of there it was disappointing to see that she wasn't ready to eat. But it had only been two days after being intubated a week so it made sense. And we were staying in the PICU which had become home to us so I didn't want to leave that room unless we were going home.

The weekend my mom brought the kids and more visitors came. It was a much better end of the week and weekend. I picked up a book and read. Turned on the TV for Lily to watch movies. It was as comfortable as you can be in the PICU. We knew Lily was going to be OK and I imagine if the second week was our first week I too would have said the anticipation was the worst part.
During that week I just blazed over we still dealt with fever spikes and extremely low blood pressures. She wasn't well, she was just better than being on life support. So we watched the monitors constantly and would worry with beeps and alarms and when the nurses looked concerned and got on the phone with the Dr's- well not the phone those little talking voice thingys- about her blood pressure being so low, I am pretty sure it raised ours. But she continued to get better as each day passed.
We had some great and memorable nurses. One nurse gave Andrew a hard time when he went to leave to get a drink, she said "are you leaving?" he said "yes just to get a drink" and she said "well who is gonna watch the monitors for me?" We laughed. Andrew was a nervous wreck just pacing and watching the monitors. Eventually his mom brought in some coloring books she got free for the kids but Andrew found them a way to focus his energy and colored he did. Seriously. Even one point my aunt Gloria and I went on a walk to Walgreens to buy him some colored pencils because the cheap crayons donated to the hospital weren't worth a crap. This is not a very safe part of town. We felt it was worth risking our lives to have him focus on something other than Lily's monitors.

When Monday rolled around our team Lily's plan was to get speech in and see if we could go home. We couldn't. She wasn't ready. Foods needed to be thickened and they didn't feel she was ready to take out the NG tube. I didn't really want to take her home with the NG tube in and figured if it is just one more day we will stay there, but we did have to move out of the PICU. :( sad face. So they were making arrangements to move us to the 8th floor and I was sad. I was nearly in tears as each critical care Doctor that worked with us stopped by our room to tell us goodbye and how much they enjoyed working with our family. They wished us the best of luck and I kept my chin held high as I said good bye and tried desperately to keep my lips from quivering and my eyes from watering. Not much longer did I have a visit from the chaplain... never saw him the first 2 weeks then he came. He was kind and prayed with us and then another visit from a cute dog. Lily was awake for that visit so that was fun! Oh how we love visits from the pups!
In the meantime of all this going on in the morning I got a call from Andrew who went home the night before and was trying to get some work done that Monday, it had been 2 weeks since he last got any work done. He told me he really wasn't feeling well. Said he felt like fainting off and on. Even when driving. I said you should go to Urgent Care, probably blood sugar or something, not to concerned but he should get it checked out. He said find a place by PCH so he can visit us after he goes there. I found a place about two blocks away and gave him the address. Didn't think much about it, I was figuring out what we could try to feed Lily for lunch. Speech said she could have pureed thickened things and I was just happy to start trying some foods for her. I was talking with the nurses about stuff. Figuring out meds and all the things that go on when you are hospitalized when I got another phone call from Andrew. He said I need to pick him up and take him straight to the heart hospital just a few blocks from where he was. Like a stones throw away from PCH. He said if I don't get him right now they will call an ambulance to take him. What?! He was in A-Fib and needed to be in the hospital. I was like what is happening. I can't come get you. I can't leave Lily. I can't loose MY PARKING SPACE! Andrew sounded desperate and scared and then I was feeling desperate and scared. I told the nurse Ariel, um my husband needs a lift from urgent care to the ER at the Heart Hospital what do I do? Seriously Ariel I need something. Advise me. She said leave Lily and get him. I said "but I have never left Lily alone in a hospital room (except to pee and get coffee)" she said "people do it all the time" I said "I don't" she assured me she would be fine. I did what any of us grown women would do and I called my Mom. "Mom.... I have to get Andrew from Urgent Care and take him to the Heart Hospital. Like now. Yes I am serious." She abandoned her shopping cart at Costco and came straight to the hospital and Lily was left alone for about 30 minutes. I backed out of my parking space and muttered to myself I really don't want to loose this parking spot. Yes I did.
I called Cheryl (mother in law) and said can you come to the Heart Hospital to be with Andrew because I wasn't going to be able to stay all day with him, my mom would have to leave to get the other kids. She dropped everything and was there in 25 minutes. How we could we have ever survived those two weeks with out our moms?
I pick up Andrew and say hey, and we leave. We go literally 3 blocks east to the Heart Hospital with our little fast pass for the ER and he is brought back, he is hooked up to a monitor, he has an X-Ray and all this is happening super fast. As we sit there he beeps more often than Lily's ever did. His heart rate was all over the place. Nurse asks if he has ever been in A-Fib before and we were like what is A-Fib? Apparently not. They asked him 80 times if he drinks a lot of alcohol, if he drinks a lot of energy drinks, if he takes illegal drugs... no, no, no. It was like the Spanish inquisition. He said see this wrist band? Our daughter has been in the PICU for 2 weeks. I'm under stress not illegal/bad for you substances. That was really annoying. The drew labs and then the Dr came in and said he will need to be admitted. Andrew and I looked at each other like wait, what? Admit him? What? Dumbfounded at all that was going on and realizing I had to get back to Lily, I kissed my love and said goodbye and went back to the other hospital to see Lily. parked in a crappy place and may have muttered words that weren't nice.
I got back to Lily, we moved rooms, my aunt and friend Laura came by and helped me move all our balloons and all the other stuff we accumulated there for two weeks and I kid you not our window faced the Heart Hospital. Later that early evening I had a chance to get back to see Andrew and poor guy was staying in something I would compare to a prison cell. Food looked awful and he had no window. I got to hear what the cardiologist had to say and he said they would give him meds that should regulate his heart but if they don't help the next day, Tuesday they will shock it back into rhythm. Oh yes you heard me right. They were going to shock my 33 year old husbands heart back to rhythm. I kissed my sweet grumpy husband goodnight and went back to my sweet Lily who was with my Aunt Gloria and gave her some cheese soup ie mac and cheese puree she refused to eat and I think I passed out.
The next morning Andrew calls me and says they are taking me now. 3 hours before I thought they would take him and he was indeed getting his heart shocked. Both Grandma's came to be with Lily while my Father in Law, Steve, and I went across the street to be there with Andrew when he woke up. We literally made it just in time. He was coming out of the procedure and in recovery and we came in and saw him wake up. He made us giggle at his confusion and then we went up to his room.
Our friend Brian came in as well to see Andrew and I felt comfortable leaving him again to go back with Lily.
That's both my visitor badges 
Lily was doing great drinking thicken liquids and eating pudding and applesauce, she was pooping and peeing and was able to get the NG tube out. They said they felt comfortable with us bringing her home! Yippee!!!!!!! 2 weeks from the day she was admitted she was coming home! AND they said Andrew was able to come home too! What a way to end those two weeks!


here was her scar 3 weeks post op - beautiful 

And April 21st we all came home. We kept saying, you were shocked today. Like literally had your heart shocked today. I now lovingly refer to him as Sparky.

And then we went into a whole new life that was recovery at home sweet home.

She is doing great. It's been a long road. We still don't feel she is fully recovered but is getting there. She struggles with being really stiff in the mornings and she has been stuck in positions in bed she couldn't get out of and that has resulted in some blisters/sores :(  We feel we have gotten these struggles figured out for the most part, but some of the stiffness is just part of this recovery.
She has beautiful posture and her pain management has been fairly minimal considering the surgery she had. She did end up in the hospital as I wrote about earlier this month and I do feel the constipation is from her not being as mobile as she was pre surgery but we are figuring out what works and will keep working on it. She is back to going to school full time and loving it. We even went out of town earlier this month and she flew on the plane in no car seat! She was able to sit the entire plane rides! And we rented a car and she was able to seat in the seat with just the seat belt. Something that she wasn't able to do til post surgery!

Her follow ups with pulmonologist have been positive. She got a suction machine for at home but hasn't needed it. She is scheduled for a sleep study in August and swallow study looked good. We shouldn't have to follow up with her anymore unless something changes. She said her lung collapsing isn't a huge problem for down the road. I was concerned she could have had some damage but she said it was like a balloon deflating and inflating. Not to worry about permanent damage. Phew!
Follow ups with Dr. White have been great! X-Rays looks good and he released her for all activities (even swimming) after 8 weeks!
He really is the top of the top! If you or someone you know needs this grueling of a surgery, this is who you need to see! Cream of the Crop!

No it's not the Hoff.... it's Dr. White.

I'll end this post with our kids on their first day back at school - yes we have short summers - it's awesome! Extended breaks when it is cool out! Modified year round is fabulous in AZ!


And that my friends is all she wrote! I look forward to blogging about Oliver and his spider man antics and Andi and her preteen drama and Lily being a healthy sweet 8th grader!
Ready for life to be "our" normal!

Tuesday, July 21, 2015

Spinal Fusion Post 4

I find it hard to believe I am on Post 4 and just 3 days into the whole ordeal. And honestly not finding much energy to do this and I guess the only reason I am doing this is for myself. For later. As fast as I am loosing memory of this time I know it will all be gone and having this is important. I think. I am pretty sure of it. Kinda. 

Oh and just a quick update on that last hospitalization, she is good. UTI all cleared up, still struggling with getting her to poop regularly and think it has to do with her not moving like she used to after surgery and still so it is a daily struggle. Literally. But she is much better. We were able to go up North to Greer and had a great time and we went to South Dakota to visit family and she did wonderfully there. So that's that.

OK so Friday April 10th sucked. And let me begin by saying Friday is my favorite day. Of all the 7 days, Friday is my star student, my shining star, the one day I prefer no one to mess with. I am a more of an anticipation person therefore Fridays always trumps the weekend. It's the being excited for than the actual thing so this day being Friday was honestly just really rude. It was like someone trying to ruin Target for me. Toddler Andi Jane tried to do that. Multiple times. But we survived and Target is still my happy place. Friday has once again became my happy day. 

Friday April 10th: Lily was on Bi-pap and still not awake the previous night/early morning they did some deep suctioning and got some gunk out, she would wake a little and appear to be in pain. Here was my Facebook post after morning rounds:

Day 4: still in PICU over looking this great reminder every day to have HOPE. She got some deep suctioning last night and got a lot of gunk out, she starting showing signs of waking up and pain (good and bad) and is getting pain management without too much sedation. Still sleepy but way more active today, trying to suck her finger (so Lily!) Our plans for today are blood transfusion, feeds via NG tube, EEG, PT ��, her drain in her back already came out and we are trying to get her off bi-pap. Busy day but if all goes well tomorrow we will move up to rehab floor! Keep flooding heavens gates. He is hearing our cries and answering our prayers

It was looking like we were preparing for a good, productive day but that didn't happen. Forgive my lack of remembering all that happened I will go by what I remember. It was a whirlwind day, things were nice and quiet, my friend Julie came by, she always makes me smile and I was glad she was there. Not before long AZ Diamondback Paul Goldschmidt and his wife came by. Not sure if you follow baseball or the Diamondbacks but he is a really big deal! Him and his wife were so sweet, he gave Lily a signed doll and posed for a photo. They didn't stay too long because things were starting to feel a little more serious with Lily. Nurses in and out. Team IV team coming in.

Lily's breathing was starting to be more labored. I had mentioned several times, hey let's get that blood going, in my mind I really thought her getting a blood transfusion would wake her up, help her feel better, start breathing better, etc. Let's get this blood! But found out her cross match had expired earlier that morning (EGGUUHFUHFDHFKDJHFKDLKJ!!!) so they had to try to draw some blood for a new one. They couldn't get any blood. Lily was so full of fluid that all they would draw was fluid. We had so many people in the room drawing her blood, then they were listening to her and called for another X-Ray resulting in finding out her lung had totally and completely collapsed, Gone. Dr. White showed us the X-Ray - only one lung showed up. 
Then flipping Adrian Gonzalez came in our room! Super star MLB player Adrian Gonzalez! It was the craziest thing. He just stood in the back with our friend Brian and hung out while this team was working with Lily. I remember the Fellow Dr. Nelly came in and got the blood we needed and things calmed down for a bit. Brian and Adrian were about to leave when Brian asked if we needed anything and I just said I need Lily to get better. Desperate and unsure of what was going to happen next we all just put our hands on Lily and prayed. I can't remember the prayer. I just know I felt some peace. A calm before the storm looking back now. It was a surreal moment.



By then we had a room full of visitors, both Grandmas, my sister, my aunt Gloria, so when our dear friends Paul and Melinda came in with lunch and Nurse Gina said "no more people in this room!" I grabbed Andrew and asked Paul and Melinda to sit outside with us. They brought us Pho and it was good. My stomach hurt but it was Pho. I had to eat it. We sat and talked and laughed some and I think God gave us that moment to breath life in because when when we went back into her room I freaked out. The transfusion was going on and she was shivering, shaking really bad. (not from the transfusion, just sharing all that was happening at that moment) I said she must be in pain, get her meds, but they didn't want to give her meds that would sedate her anymore so I said please just give her something, she had a fever and her breath rates were in the 60's and heart rate was in the upper 160's and she was working way to hard to breathe. 
Also after asking multiple times if anyone thought possibly the reason she wasn't waking up could be due to her being in some sort of status epilepticus they finally brought in an EEG machine to find out. So this guy was doing an EEG while Lily was laboring to breathe and was shivering and I thought Andrew was going to have a heart attack. Dr. Nelly came in to say she is struggling and will probably need to be intubated but we can wait for the EEG to be done. That was the longest 20 minutes ever. I knew I trusted them, but watching her struggle was excruciating! We knew she had to intubated and actually welcomed it. We couldn't watch her any longer. 
Here was the update I put on Facebook:

Unfortunately Lily had a lung collapse and required her to go back on the ventilator. Most of our big day goals went down the drain. But she did get transfusion and an EEG to check if there is any seizure activity. Praying for a better tomorrow

After the EEG we were kicked out of the room and we paced outside her door as they intubated her for the third time since Tuesday. (During surgery she was intubated, extubated after surgery, re-intubated in PICU Tuesday afternoon, extubated Thursday and then re-intubated again that Friday - 3 times) later that day/evening they put in a picc line so we wouldn't have to deal with her being a pin cushion anymore. She had to be given a paralytic drug twice that day, once to be intubated and again to place picc line. Not helping the whole she's still not waking up yet situation. 
My last post that night:

We can breathe easier now that she is. It's taking longer than we thought but our comfort comes from knowing he's got her in his big hands


Probably not too surprising to know Andrew and I both refused to go home that night. I remember our nurse Megan coming in that night and seeing her sad face as she looked in on our room as she walked by and saw Lily re-intubated. That nearly broke me. I spoke with Mel on the phone and she prayed with me. God carried us through the worst day and we came out alive. Not well. But alive. 

Saturday April 11th:

PTSD. That's all I have to say. All that was on her agenda that day post rounds was rest. Heal that lung. Then they decided to do a longer video EEG because as I suspected they saw lots of seizure activity on the short 20 min EEG and wanted a better look at what was happening neurologically. My mom brought Andi and Oliver up and it was nice having a break with them. We went to the Zone and played games, did some crafts, ate in the cafeteria. Andi gave Lily some sweet love and helped bump up Lily's super low blood pressure. Oh and our friends brought us the best tasting Pei Wei I had ever tasted. In my life. 





Amongst the baseball players visiting us, we also have a good friend named Josh Havens who is in a band called The Afters and at his concerts during this time he was saying a prayer for Lily and asking his fans to be praying her her. And on Sunday morning our friend Paul lead a prayer and our entire church prayed for Lily to wake up. Guess what day Lily woke up? He answers prayers friends. He truly does. 

Sunday April 12th:
Here is my FB post after rounds that day 

PICU day 6 (long) update: this morning Lily woke up and for the first time looked like Lily behind those beautiful blue eyes. EEG confirmed that it was Lily finally, the last couple days she was having sub-clinical seizures (as I expected) and thank God the PICU Neuro knows CDKL5 and knew that even though she looked like a disaster going on in her brain he chose not to put her into a medically induced coma (which is often what they do for sub-clinical status seizures) he let her ride it out and this morning she woke up and her EEG was the best yet so it was "Lily normal" Amen! So that is great news! There is also some unfortunate news and that is her lung that collapsed on Friday was looking better unfortunately now looks worse today and it is due to a large amount of fluid as in she gained almost 16 lbs since pre surgery so poor girl is filled up and that is bad for a hurt lung so today's plan is to get the fluids out, give her breathing treatments and manage pain. She has been febrile at night but cultures have all been negative and we are hoping it's just due to lung issues but treating with antibiotics to cover it all. Tomorrows X-Ray will tell us what's our next move regarding her lung and respiratory issues. She's still on the vent, she has the folly out, she is getting feeds via NG tube, she hasn't had a fever since early this morning and EEG is off her head and her hair is pretty again - of course least of our worries but it's a small comfort for this mama. We never imagined being still in the PICU on day 6 but we are thankful for the wonderful care she is receiving and all the life rafts that are being thrown to Andrew and myself to keep on swimming. All those prayers are heard and she will be OK. I can finally comfortably say she will be OK

They did a Bronchoscopy that day and said there wasn't too much in her lungs so that was good. Her fluids were all around her. She wasn't still passing any tests to get extubated, still too sleepy. They were pumping her full of lasix on the day they removed her folly and that was awful. She was wetting the bed all the time and it was so hard to change her. Oh those days were so rough! We had some visitors, family mostly. The weekend was more on the quiet side.

Monday April 13th:
Our goals were to get her to pee and poop. Andrew' brother Josh and his wife Carrie flew in and spent the day with us. Carrie was a huge help to me (poor girl) as we were trying to figure out how to change her diaper and not have pee and poo everywhere. And also not hurt Lily. Not fun. At all. But she was going and going a lot and she was loosing the fluid built up. Also that Monday Lily and Andi's youth Pastor, Matt, came by with our friends Josh and Cara and they laid their hands on Lily and prayed with us for her.

I'll stop here. I'm tired. Should be able to finish up the rest in the next post. Things finally started moving in the right direction. We had so many people near and dear to us visit, send gifts, send cards, our neighborhood started up a collection of gift cards for our family, people dropped off amazing take out, brought up Starbucks, called us, texted us, messaged us, people were our jam during this season. I would have told every single person not to come. Not to bring anything. Not to give us anything. So I am glad they didn't ask me. Or they did ask me and told me to knock it off when I said no. The time was excruciating. Painful. We didn't even have the TV turned on until the next Tuesday. If you know me you know I like my TV. If anything tells you how worried we were that would be it. No TV. The time was awful but what I remember was how held up we felt. I can't imagine walking this journey without the people God purposefully placed in our path.
I'll finish this up soon.
Thanks for hanging in there with me and writing this. It is not my best writing but I am OK with that. It is serving the purpose.

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