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


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.

Thursday, July 2, 2015

We Interrupt Your Current Program....

So I am sitting in the hospital bedside with Lily. Currently. Like right now. I thought hmm I have time I could do my next post from spinal fusion, but I thought nah. That would take way too much energy.

So I am going to write about this hospitalization. Like the one going on right now.

Yesterday when I came home from work Lily's caregiver Marrisha said she had a couple seizures and was shivering and wasn't eating. She wasn't Lily. I touched her head and she was on fire. She was running a fever of 103.2! Yikes! I gave her fever reducers and put her on the couch and she flinched whenever I touched her, even when I sat on the couch next to her. She obviously wasn't feeling well. We were conflicted with what to do. If it were our other kids we'd ride the fever out a little bit at least. With Lily we don't like to ride anything out at home. So I had to run the kids to karate and drop Andi off at church, then Andrew calls and says I think we need to take her to the ER, now. He says her tummy has a lump on it and it is obvious her pain is all localized in her tummy.
Thank the good Lord for our friends/neighbors who took the other 2 without a blink and we rushed Lily to a near by hospital, Mercy Gilbert, that just recently added a Phoenix Children's wing. ER was packed but they got her back and in a room quickly. She got X-Ray, cath for urine sample, an IV placed, blood drawn, a CT-Scan and diagnosed and treated for UTI within 3 hours. It was quite impressive.

All the while my most favorite night of the month was unfolding... book club. Waaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
(that's my selfish toddler pouty self letting it all out)

And she got admitted. For a UTI. Ugh. She needed the big gun antibiotics and by 10pm her and I were once again shacking up in a hospital room.

This morning two sweet Doctors came in and said she was really constipated and has an impaction, that is probably why she got the UTI. It is a double edged sword. Poor girl. I had suspected possible UTI because her urine was strong smelling, but never showed any other symptoms so I was just trying to give her more fluids. But I was wrong. Should have called the Dr. sooner. Some times I feel like I should be fired. Life is so busy, I forget what day did Lily poop, how often did she pee? Drink? The parenting self doubt party bus sure does strike and hard when you are already feeling down doesn't it. I should have done better. All I can do is try better from here. And here I am getting non judgmental (at least I hope so) support and help with this messy process and I am taking it and just accepting this hospital stay (that had me missing my book club and leaves 4th of July in Greer up in the air) as God's interruptions. I'm busy. As much as I vow to slow down, I don't. Every day I'm hustlin. Really maybe less gansta as some hustlers, but I really feel like I'm always hustlin. I want every day be cuddlin. Not hustlin.

Don't get me wrong. I started this day GRUMPY McGrumpy Pants! For sure! I actually was 2 seconds short of posting this status "Can I just not have to deal with people today" I was not feeling anything devine about this cold room, enemas, miralax, poop everywhere, alarms beeping, IV's flowing day. Not at all. But I'm here regardless how I feel about it. Andrew took the kids up to Greer, we will hopefully join tomorrow (??), I already set up a dog sitter for us so I don't have to worry too much about the animals at home. It's OK. It's OK. It's OK. Breathing that in and out. Sometimes this life can really wear on me. OK a lot of times it can. I feel like a martyr at times just giving up all I have to everyone and when I do it with a bad attitude what is it all for?

Lily was given to us, God knitted her in my womb. He knew every seizure she would ever have. He knew we'd be sitting here right now. He knows all and he knows me and for some reason he thought this precious girl would belong to me because he knew me too. He knows the selfish, grumpy, I don't want to deal with any people, me, but I guess he also knows the me that could see his interruptions in my life and recognize them and find goodness in them and I know he is telling me I am doing the best I can for her and I will continue to do so.

Currently she is sleeping after a seizure, fever has stayed away, tummy is still tender, swollen and full even after 2 enemas, but I have been reassured she isn't so bad she will require surgery, so that is good. I don't know what the plans are for tomorrow, I know what I want those plans to be, but that doesn't matter. I am trusting this is where she needs to be and will take the advice and care here they have for her and we will go from there.

Monday, June 29, 2015

Spinal Fusion Post 3

My Facebook status post 4/7/2015 sometime late into the night:

They say she won't remember these days. I wish they could say the same for us. After a successful surgery things post op took us for a loop. After multiple complications they realized Lily was rejecting her own blood they gave back to her in surgery. That caused a whole lot of problems all leading up to her being ventilated. We thought she'd be off the vent by now but seizures came fast and hard and then a plethora of medications that weren't doing anything for the seizures. I think I can safely say she is resting peacefully now and we might get a little rest but because she is so sedated she can't come off the vent. I am clinging to my knowledge that joy comes in the morning. I am clinging to knowing this needed to be done and knowing we are not alone. And I am praying she has an uneventful night and we make a plan and all goes well tomorrow. Thanks for praying. Trying to keep folks updated but it's hard. This is hard. Parenting can be the most heartbreaking job on the planet.

Our nurse that night was Amy and she was in our room AROUND the clock. I don’t know if she even had another patient. Lily was top priority and because of her I was able to close my eyes and sleep.
Many people would say “try to get some sleep” or “I know it is hard but you need your rest”, kind words somewhere along those lines but here is the truth. I slept. I pretty much slept every night we were in the PICU. It may have not been 8 hours resting on luxurious 1000 count Egyptian cotton, but there were at least 5 - 6 hours each night where I was rolled into a fetal ball and I slept.  I don’t know if it was God’s sweet mercy on me, I don’t know if it was pure exhaustion, maybe it was the amazing nursing staff I was comfortable leaving in charge, whatever it was, I slept. So that night when I finally laid down, I slept.
I was up early of course, found myself the coffee machine in that big nice waiting room we neglected to find on the day we needed it, but it took me several days to find the cream (IN THE REFRIGERATOR!) seriously, that was a huge stress for me. That first morning I had to wait for Andrew to get there (which was early) so I could go down to the hospital coffee shop. Eventually (a couple days later) I found the creamer and that made life easier for me on the 6th floor. But geeze. Maybe a black sharpie saying CREAMER HERE IN THIS DRAWER IN THE FRIDGE would have been more helpful.
But again these memories are probably not necessary for our story. And I realize some of you are planning an intervention with my coffee addiction. You are wasting your time. I will flee.

Here we are Wednesday the 8th:
I am relying heavily on Facebook and Instagram for these details. I can tell you we had visitors but unless those photos are posted I won’t know what day it was or what we talked about. I probably won’t mention the visits for the most part because I will for sure forget someone and I’d rather not hurt any feelings by making visits seem forgettable because they weren’t. We were so loved on during this time I know it is what kept us afloat. We were carried through this time by friends and family. If anyone asked me to visit I would pretty much say not today, but others just came anyway and it was refreshing and re-energizing. So thank you friends and family. Facebook posts, private messages, texts, calls, visits, gift baskets, gift cards, food drop offs, those were all life savers, we were told to keep on swimming and we did, but those things held us up like a life boat when we couldn’t muster the energy to keep on swimming.

OK back to Wednesday the 8th, Andrew came back early and never left. Lily was intubated and during those morning rounds we looked at her x-rays which I already shared in last post, reminding us why we did this, and our plan was for her to wake up, get the vent out and manage her pain. New nurse, Gina, came and we were blessed with for 3 days. She was amazing and funny and another shining moment from those dark days. Throughout the day the Respiratory Therapist would come in and check on her and do coughing tests with her. His name was Jamie and we saw him a lot over those two weeks. He was opinionated and a true expert in his field. 

And he pissed me off.

Let me say Lily has never had respiratory issues ever, OK well she had gotten RSV as a baby while on vacation in Colorado where they threatened to air flight her Children’s but we talked them out of that and she recovered just fine with treatments and steroids and then in November 2013 she developed pneumonia but we caught it so quick she didn’t even require hospitalization so her past behaviors were our best indicators for the present, right? So I kept saying, she can breath on her own, she is a healthy kid. I was sure she wouldn’t wake up because she hated the tube in her throat and was for certain she would wake up once we got the tube out.
Jamie disagreed. He tried these cough tests and kept saying she was failing. So he said she could not be extubated on Wednesday. I was so annoyed with Jamie.

That day Lily slept. Andrew would pace the room, touch her feet and see no reaction and go back to pacing. His worry wore on his face and on his feet. He should have worn one of those things that track how far you walk in a day. I realize those things have a name but at the current moment it has not come yet to me so I am saying a whole bunch of words to fill the space of one tiny word. 


Fitbit! Yes! Fitbit, thank you brain, you can be slow, but you do show up. Eventually. (editor note: I was almost done with writing this when it came to me)

Andrew paced and I am not sure what I did. Watched him? Look at magazines. Yeah.. not sure. I  think a therapy dog came by that day. And sweet friends, sweet friends came by and we prayed. Our moms were there and I am sure we walked to the cafeteria for something to eat. I don’t really know.
Andrew would play Slumber by Needtobreathe on repeat and we prayed some how those words would sink in.
Wake on up from your slumber
Baby, open up your eyes
Wake on up from your slumber
Baby, open up your eyes

Come on
Sing like we used to
Dance when you want to
Taste of the breakthrough
And open wide

April 8th nighttime post:

Sweet girl is resting too hard still for vent to come out. Trusting in his timing even though it's hard. Not much to report. She's sleeping hard and stable. — with Andrew Nothdurft at Phoenix Children's Hospital.

Lily sleeping with her beautiful gift we were given before getting to the hospital. That gorgeous blanket was admired by everyone

Thursday April 9th
We slept the night before (did I say we? Oh yes I did, Andrew and I bunked up in the tiny couch and we slept like honeymooners all cuddled up as tight together and as comfortable as two very tall people can manage sleeping on the width of about 4 feet can sleep comfortably. Neither of us were leaving her and that was that). We had nurse Megan and we had her for 3 nights. Thank the Lord. She was wonderful. I said “Megan, we are really tired, we want to go to sleep, is that OK? Will you wake us if anything happens?” She assured us and we slept. We woke up with a heavy blanket lovingly tossed over us and I thought man Andrew’s mom is here early. She always covers those who sleep with a blanket. Then I rubbed my eyes are realized it wasn’t Cheryl, it was the X-Ray tech throwing a lead jacket on us and taking an X-Ray of Lily. My bad. I liked my initial thought better. They had to check her tube to make sure all was well. This was how we continued to wake up for many, many mornings. Except for the mornings they forgot to cover us and I am probably now sterile forever.

It was a new day. 

There is something us crazy Christians like to say and it is his mercies are new every morning and it is such a beautiful and comforting reality for me. Nighttime is dark and fearsome. At night I am weak and feel defeated, but each and every morning I wake up to his light and I am powerful and brave and ready for a new day. I am filled with Hope and the incredible thing about waking like this every morning from the 6th floor at the Children's Hospital was this is what we saw every time we looked out our window.
This is the reminder we had that we will all wake to a new day:

Our view right outside our window - Phoenix Fire Department
I feel like I should explain why Andrew and I were able to be with Lily around the clock. One simple answer, Grandma’s. My mom would sleep at our house get the kids to school and come to the hospital and then get back there before they got home from school. It was a great plan and we were able to get meals and walk around the hospital when needed because we always had Grandmas there. Grandpa would come too sometimes, but Grandpas aren’t super hospital people so it’s more Grandmas. We had it covered with support and were able to not have to worry about our little hearts beating away from us at home.

After rounds on Thursday morning we found out her hemoglobin was really low, she was on a low setting on the vent, she was still sleeping and still unresponsive.
The intensive team wanted her extubated and that was the day's goals.

I thought well damn, give her some blood. Then she’ll wake up. Right? Something. We had all the Doctors come in and check her. Dr. White always came in with a smile and told us to hang in there. The resident was so sweet and wonderful and always answering questions and had wonderful bedside manner. Dr. Nelly, the Fellow on Lily’s case was hard to read. She seemed a little tough at first but ended up being one of our most favorite people we looked forward to seeing every day.

We had a new respiratory therapist on this day, but she was sounding a lot like Jamie. I was not happy about that. I thought give her blood, take the tube out. You will all see, Lily will be back to Lily. This is where I realized my gut isn’t always 100% - hope all the while is a good thing most of the time, it can also block your brain from reality. It’s a side effect of parenting I think.

It was in the afternoon and our Pastor Palmer and his beautiful wife Veronica came to visit right when they decided to extubate. Great timing for them. We all stood and watched them remove the tube. I was nervous but thrilled, they’ll see I thought. She’ll be Lily again.

Andrew asked the RT if she thought it was OK to extubate her and she gave him a look and walked away. She was angry. She was so obviously angry that she was extuabting a child that was not ready for extubation she couldn’t formulate one word. RT was mad, Gina (RN) was mad and I thought what is happening. Fellow and Attendee said pull it out. They knew right? So then Palmer and Veronica put their hands on Lily and we all prayed.

Once Lily came off the vent we were able to close her door. I didn’t want her door closed but Gina said they were bringing in a patient from life flight and it will be a trauma situation and we won’t want to hear it so she closed the door. I don’t think she realized my favorite shows all have to do with Doctors. But whatever we closed the door. Trauma was unfolding next door and not before long trauma was unfolding behind our closed door.

Lily had on only a nasal cannula after being intubated for over 48 hours, it didn’t take long before we saw her shaking, and her nostrils were flailing and she was trying so hard to breath. I thought she is in pain, medicate her! She is in pain! She wasn’t breathing, it was chaos in the room as all the monitors were beeping. Her heart rate was in the 140’s and her breath rates were in the 40’s-50’s. We open the door, hit the nurses button and ran out to find Gina. Found her and then she was yelling to get an RT in our room, but it was shift change, no one was available, she said "Get someone in here now!", it was chaos. I don’t think I was breathing as I watched our baby girl struggle for each breath. Oh my heart aches remembering what I have tried so hard not to remember. She was fevered, she was trembling, nostrils were flaring, monitors were screaming and I thought one more step… I physically cannot take one more step emotionally. I cannot do this. I wanted to run from that room and write a wish you were here post card. Thank God he swept in and took the steps for me. I had lost any will left in me, he was in control. I was broken and my pieces were all over the floor. God held me and therefore I was able to stand there and watch our world come undone. Finally got an RT to put her on bipap, she got pain meds and seizure meds needed via NG tube. I am not even sure when that was placed. I think Tuesday night I am sure. Then again she was resting peacefully and we sat down.

I don’t remember what night it was but I was talking with Megan (our night RN) and I was telling her how I can’t imagine working all night long and she probably believed me as she saw I am able to sleep no matter what area of space I am limited to and she was telling me how it isn’t that bad and I joked about how she probably doesn’t have to deal with parents as much during her shift  and she said that it was true and she said “I love the families but sometimes in there (PICU) it is hard because people don’t realize how sick their kids are”. And even as she said those words I thought oh yeah I bet you’re right. And she had to be so right because I had no idea she was referring to kids in Lily’s condition. There we sat in the most critical area of the PICU across the way from the nurses station and I was thinking she must be talking about some other poor chumps with sick kids. Because that is the reality of life. We don’t see what is right in front of our face because seeing that would mean believing it and that was something I wasn’t prepared to hear, see, nor believe. Our daughter wasn’t breathing on her own. Breathing is pretty much an essential of life. Therefore Lily was really really sick and Megan was right. We had no freaking clue.

April 9th evening Facebook post:

Sweet girl hasn't tolerated the vent out well and needs bi-pap to help her breathe. It's been a scary evening. Pray Lily will wake up. She is still pretty unresponsive.

I want to go into Friday the 10th, but that was her hardest day of all and I don’t want to keep going if I have a ton left to go with. So I promise to come back soon. And you all must admit this was a quicker turn around than last time. See doing IS proving!

Popular Posts