We’re Still Here!

I haven’t written in a long time, as you can see. I’m sure a lot of you check back here a lot to see an update and there hasn’t been anything recent since February.

To be completely honest, so much has happened in our lives, that it’s become so difficult to keep up. SO much so that it’s just so hard to sit down and write anymore. But there is so much always on my mind.

First and foremost, we’ve had a lot of tragic events happen lately. This year has not been the year for us. Heck, last year wasn’t either! But through it all, we try to stay grateful and thankful and we know we’re blessed.

As we’re growing older, things are changing. Our health is changing, our kids are growing up and accidents happen. Ugh! I hate that last part. Sadly, it seems that all to often there’s this big black cloud above our family, that we just cannot seem to rid of.

And to reflect back upon those days of hardship, just make it that much harder. And it’s VERY hard to write about. But that is what I write for…it’s helps release some of the pain.

I will start with the most recent…

We started a family day off with the girls. We went to Home Depot and Costco searching for new plants and trees to plant in our front lawn after our horrible Texas Winter here killed literally all the hard work my husband did last summer. After being gone most of the day, we finally made it home that long afternoon our with the kids (whom were screaming most of the ride home because they were so hungry and tired). By the time we walked into the door, Bobby had already had Juliette strapped into the highchair (car wasn’t even emptied yet) as I was coming out of the bathroom. I pulled out fish sticks from the freezer for Josie to eat and we laughed for a second about how cute Juliette is and how demanding she is about food. Then…BAM!

Juliette kicked herself backwards in her highchair. Full force. Her head bounced off the back of the chair like a basketball. I saw it all. Bobby was facing me. It was a slow motion of helplessness. It felt like minutes to get to her and get her out of that chair. I pulled her out of her seat and tried to make sure to keep her neck in line or lie her flat and then she threw up everywhere (so laying flat wasn’t an option anymore) and within the matter of 2 seconds she was limp and lethargic and then unresponsive. I screamed to Bobby standing only a few feet away “CALL 911!” I was trying to console her as she was screaming in and out of lethargy. I was terrified. Josie was terrified. Bobby and I were both so scared, crying and begging God to not take our baby. I just kept yelling at him to call 911! CALL 911! CALL THEM!! (as he’s on the phone with them). And he just kept yelling back at me, “I’m on the phone with them now!” Emotions were high. Hid Dad was visiting in town. It was a nightmare.

It happened so fast ya’ll. So freaking fast.

You think just because you’ve had one child, that you’re prepared for the second. But the truth is, they are so very different, it’s literally like starting over every single time. That is how it is with Josie and Juliette. They are two very different girls. I think God creates them this way so that they either fight or get along. I mean, look at my sister and I growing up. We hated each other one minute and we were best friends the next. THIS is how my girls are.

Juliette is a strong, strong, strong little girl. She has to be because she’s the youngest. At 18 months old, she can do a lot and has almost more strength then I do.

EMS and Fire Trucks finally showed up (which felt like forever-as usual). Not to mention they drag their feet. I scrambled around to pack whatever I had to, as they were strapping her onto the stretcher. My neighbor and very good friend came over and watched Josie while we went to Texas Children’s Hospital in the Woodlands, just about 30 mins away in the traffic that evening. I noticed in the ambulance, as I sat there and watched her completely calm, bluish tint filling her forehead. At this point, it was as if nothing had happened. She was calm. But little do MOST people know it takes “time” for these types of injuries to show symptoms. That’s why I always say “time is brain!” I mentioned it to the woman that was back there with me but she was about as stupid as a box of rocks. They all are, by the way. The most they can do in an ambulance is CPR. So if your emergency is life threatening, it’s almost worth driving your self-totally not kidding. They aren’t even equipped to administer epipens or even allow you to. But they can administer a drug addicts reversal drug called Narcan to save a junkies life. Don’t even get me started down the road of American healthcare and this sick, twisted world we live in. I know their “skills” because I work with them. I discharge patients to them daily. They make me fill out forms that only make me wonder and my stomach sick. Most of the time they don’t even know how to take vital signs. Not to mention, I’ve dealt with them with several of the 911 calls I’ve had to make for Juliette since she’s been born (there have been way too many!). And when Josie had her near death experience with a food allergy, the man said “I’d just take her home and keep giving her Benadryl (as she’s vomiting and has hives all over), we can’t administer epipens here.” Meanwhile I told his ass to hit the road and I drove her myself to the hospital where she then received 6 doses of epinephrine and recemic epinephrine and transferred to ICU while she limply lie in my arms, hanging by a thread (but this story was already shared years ago on this blog).

Juliette keeps me on my toes! She reminds me of me. When I begged God to give me another baby, after trying for 19 long months and 3 miscarriages, he really knew what he was doing. He is really, really, testing me. And some days I start to lose my faith. I really, really do. Is there a God? Does he hate me? Why so much bad stuff happening to our family? When can we breathe?

I knew when I saw her head bounce off the back of the seat like that, that it was a contusion. Especially since she had barely any bump on the back of her head and she hit hard! Hard enough to knock her out and make her vomit over and over again. You’d think anyone at a hospital would put that together (with their education) and maybe think: “hmmm, no bump, but is throwing up and lost consciousness, let’s think about this and do some testing.”

Nope. Not this POS hospital.

Note: if you haven’t noticed by now I am not a fan of hospitals. Mainly because the staff is over worked, underpaid and mostly just don’t give a damn. It’s sad here in America, but it’s true. I LOVE what I do, I cannot imagine those that do what I do and don’t love it. I just cannot understand why you’d pick a career like that and not completely give it your all. These peoples lives are in YOUR hands!

By the time we made it to the local Children’s Hospital, they basically laughed at me for how upset I was and for how scared I was for her. They tried to make me feel better by giving me this bullshit spiel about “oh this happens all the time and you just have to keep an eye on her and she will be just fine. There’s really no lump behind her head.” If she tripped and fell then no shit! I would have totally let it go and moved on. But this was so much more and no one was listening to ME.

WELL DUH you assholes! I just got done telling you that her head bounced! Her brain literally smacked it’s self against the front of her skull! AKA: called a contusion.

They didn’t want to run a single test. No CT, nothing. Which pissed me off! They told us since she is not activively vomiting and seems to be laughing and smiling, things should be fine. For one, SHE IS A KID!!!! They are resilient! and Two, my kid wasn’t drinking or eating, when she normally will eat any and all you give her (again-notified RN of that) and she wasn’t exactly walking around to induce a response that would make her vomit (post concussion dizziness). She was in the bed, in a room, ignored!

The doctor came in and told us that they wanted us to monitor her for 4 hours at home. We could monitor her there in the hospital if we wanted or take her home. It was late at this point. If this is all that they were going to do and they were giving us no choice, we decided we’d take her home and if anything happened, I’d take her downtown to a real hospital in the medical center. They gave us the discharge papers, I texted my friend and told her she was going to be relieved soon because she was watching Josie when we left the hospital.

Well, we only made it a half mile down the road when she started vomiting so much and choking on it, screaming and scared. I made an illegal turnaround, went right back into that ER and screamed that we were back and that they better do a damn CT scan STAT! This entire time they didn’t want to because of “radiation”. I find that bullshit. They quickly then put her in a c-collar and did a bunch of labs/IV and by that time, I had to leave Bobby and Juliette there to go pick up Josie and let my friend go back to her home and family. As I was driving home, Bobby calls me to tell me the results of the CT…

“You were right babe, she’s got a contusion and a brain bleed all at the front of her head (ahhhh-stupid ass EMS lady). And most likely a horrible concussion.”

I felt like I couldn’t breathe.

My world was at a stand still.

Yes, I was driving…

Yes, Josie was in the backseat in her carseat.

I screamed so loud and started to cry. I YELLED at the top of my lungs “WHY?!”

Josie: scared and asking what was wrong. I just couldn’t help myself.

My main frustration is WHY DOESN’T ANYONE LISTEN TO ME? I seriously, really know what I’m talking about. I don’t just do what I do for the money. I do it because I REALLY truly am interested in my career. Plus, I’m a mother! My instincts are REAL.

I work in downtown Houston, in the largest medical center in the world! I work every single speciality! I work in the ER, Stroke, Cardiac, Neuro, Psych, Transplant, Ortho, Epilepsy (etc.) I am a flex nurse. I have about as much knowledge as an NP and I get paid just as much as one. I LOVE MY JOB, which is why it makes me good at what I do. I work at the BEST hospital in Houston. And the BEST hospital in Texas. And I’m proud to be there. People from all over the world come to Methodist! I am a nurse, not a doctor. But I DO know my shit. And I am always, always, always right when it has come to accidents or “what ifs” when we’ve been hospitalized before. My critical thinking brain is on overdrive! And that is one nursing skill I excel at: critical thinking. And when I see a patient (that’s not even mine) take a turn for the worse, I can usually always tell you why. Always. Give me a few facts and I can tell you what’s wrong.

I had to try to keep it together because my 3-year-old was in the car with me…but it was hard…very hard. I just kept crying. And Josie just kept asking what was wrong and what was wrong with baby sister Juliette.

I was told by Bobby to drive straight to downtown Houston medical center because they were life flighting her there to the Texas Children’s Hospital (next to my work). She needed to see neurosurgery and the small hospital by us didn’t have that team (insane!). How can a hospital NOT have at least one neurosurgeon? At the last minute (I guess a larger emergency happened), they switched it to EMS. It took them forever to get there and pick up Juliette. We were already on our way downtown. Josie and I sat in the basement parking garage forever waiting for them. Then we decided to just go in and waited even longer for them to show up.

Once she got there…

It was a shit storm ya’ll…

I felt like I was in a code. It was absolutely the most terrifying thing I’ve ever seen my child have to go through. At least THIS child. Let’s just note that all of this, everything from here on forward was and is great birth control. We cannot possibly fill our hearts with another child. We are complete as a family of four. We love these girls so damn much it hurts. It hurts so much that it’s driving me crazy.

They took her in this room and strapped her down. Within a matter of seconds, there were people everywhere. Everyone had a task and it was incredibly organized and calm. People were yelling out her pupil sizes, her strength, each bruise she had on her body and yanking and pulling and poking and prodding. And I just lost it. I fell to the floor in agony. I just wanted to hold my baby. I wanted to tell her I was there and she will be okay!

This protocol they do (which is amazing, and very well put together and incredibly professional-I might add) took about 5 minutes but felt like an eternity. And after it was done, they scattered like mice and I crawled onto the stretcher with her. I held her as much as I could, given the risk of broken neck bones and such with the c-collar on.

Just writing this and reflecting back, is making me want to throw up. I can’t even travel back down this road because the vision of her fall is with me forever. I’ll never let it go and I’ll never stop blaming myself for it. One way or another, It’s all my fault.

Thank GOD we have cameras all over our house, inside and out. We were able to pull up that video and show every single person that questioned us and the story. Which I totally, completely understand and sadly, we live in that type of world today. But oh my God. I could not help being frustrated when all I wanted was answers and I wanted to hold my baby and I wanted her comfortable.

Things started to get bad…

When you know what I know (because you’ve seen it all) and you are also the mother of that child, you turn crazy. I know that I turn crazy. And if you don’t listen to me, then I get even more crazy. Because I know I’m right. I turn crazy in the sense that I want answers and I want them NOW! Don’t make my child with a brain bleed sit for 15 hours before seeing a physician.

We sat in a triage room with two chairs and a stretcher from the moment we got there until the next morning. 15 hours! Bobby slept in the bed with Juliette. I stood up all night pacing and Josie slept on the bare dirty floor…

To make an incredibly long story short (er-because this is already long) our experience was awful. And totally not surprising. I expected this. Honestly, I really, really, did.

When they finally got us a room “upstairs”, it was the next morning at 5:30am. They told us that we absolutely had to use the crib (cage) because of doctors orders and I told them that I refuse. The nurse gave me a huge attitude. “Well this is the doctors orders and we have to follow them.” Then I unloaded. “It’s 5:30 in the morning lady. I haven’t slept, while these three did on the dirty ass floor of your hospital. Are you really going to stand here and tell me that it is doctors orders or what? I, as the patient, have the right to refuse and I’m telling you right now that I refuse to have a crib. I want a bed. I want to lie with my baby, assess my baby, listen to my baby and be prepared when she throws up because I know damn well that unzipping that cage isn’t going to be fast enough. And I also know damn well that you won’t be in here assessing her like I will be. Oh! And I’m also a registered nurse myself. So don’t you dare tell me that I don’t have rights because I do. I have the right to refuse anything! I am not ignorant nor will I let you force me into thinking or doing anything I don’t want to. Give me the waiver right now to refuse it. And while you’re at it, please get me your charge nurse, page neurosurgery (because I’ve been trying to get ahold of them all night. By all means, PLEASE call them, I’d LOVE to see them considering the EMS just dropped us here and we have yet to get any answers, tests, etc. So please, leave our room, go grab your charge nurse and page neurosurgery and tell them that yes, I AM refusing the crib. If they want us to leave, we will. Discharge us and we’ll go to Memorial Herman. I’m not putting my baby in that cage.”

Yes, I did say all that.

Within a matter of seconds the charge nurse came in, the neurosurgery resident (oh! hey! Finally!) came in and the RN was standing there. I began to explain to them exactly what I had just told the RN. And the charge nurse and the neurosurgeon both said “okay, that’s fine, just give her the waiver to sign that she refused it, that’s all.” Took less then a minute. Done.

So as this cage sits in the hall, us four stand there waiting for the RN to come back. 15 minutes pass, we don’t even know where the call light is to turn on the TV to entertain Josie. They just left us. So because I am a nurse and I’m familiar with the (call light-I knew where it was but I was proving a point!) I walked over the the board on the wall and pressed “staff assist”. You wouldn’t believe how many people came running. Then the RN yelled at me and said “I am in shift report/change of shift. You cannot just press that button.” Then I went on to tell her that her ass just dropped us in this room and we have no bed, nothing. “Are you going to orient us to this room? Tell me where to sit? Should we make a cot on the floor?” She claimed she’d be back, but she wasn’t. It was a new nurse because of shift change. Whom then finally found us a bed and blankets.

This ordeal makes me sick to even type. To even go down the road of ignorance in our American healthcare just makes my stomach turn. Why can’t people just use their brains? You cannot pick a career like this and expect to do bare minimum just to get a paycheck. You can’t!

It was again hours before neurosurgery came to talk to us about a potential “plan”. I just kept telling the nurse “time is brain”. I want to know, I want to see the results of the CT scan of her brain. I want to know where the bleed is! I want to see it! Of course they all say the same thing “I’ll go page neurosurgery. And I don’t hear of see them again for hours.

Not one person once told us we needed to weigh any potential diapers she may have. Or that her intake and output needed to be measured. Because even I, as a neuro nurse, know that these types of things are important. Not one person asked is she has vomited (which she has). And I never saw a morning nurse come check on us, write on the board or introduce herself until I pressed the call light at 9:30-10:00am asking for Tylenol and Zofran because my baby was puking from be tossed around by the neurosurgery resident that came in and scared the life out of her.

So when he did finally come in he told us that her brain bleed is pretty extensive. And to expect cognitive and neurologic deficits temporally. And to expect the vomiting due to post concussion. I mentioned IV fluids since the vomiting (loss of electrolytes) and the lack of a wet diaper in 24 hours and they just disregarded me. As again, my child continued to throw up.

I fought for hours and hours to get just basic IV fluids in my child because she refused to eat, drink and had only one wet diaper in 24 hours. Every single resident kept refusing. Or the nurse would say “oh, we can page the Neurosurgeon again.” and walk out the door.

They’re plan was that they wanted to starve her long enough to get her to want to feed herself. Well, I’m sorry ya’ll but that just wasn’t happening. My child is sick! She is dizzy. She doesn’t feel like eating and drinking. She was starting to get lethargic and then started throwing up and shaking. I knew right away that it was her blood sugar in addition to the concussion. She needed some dextrose. I desperately tried to give her apple juice but it was a fail. Finally, enough was enough and I called the patient advocate and director of the unit to do something. My daughter needed something IV and something NOW. She needed dextrose and electrolytes. She was barely arousable and slept until 1:00pm. This is not like her! But no one listened! NO ONE LISTENED TO ME!

It took Bobby going out in the hallway (to sit in a rocking chair to calm Juliette) to alert a neurosurgeon that just so happened to walk by (that the nurse claimed she paged all day long) and let them know what’s going on with our baby. Because no one has yet to see her or see how she has been. Neurosurgery seemed thrown off guard. “No one paged them.” No one told them anything about what has been going on with Juliette. And mentioned that they never got the page. Even so…why haven’t they come by to assess her at least? After all, we left the Woodlands to come there for a HIGHER LEVEL OF CARE. We didn’t come there to sit there. We wanted answers. A plan of care. A road to recovery…

Again…be your own advocate people! Don’t trust anyone!

It took five minutes to tell them what has been happening with Juliette and this downward trend she’s on of unsteadiness when standing, refusing to walk and vomiting. They finally put in a CT STAT (done within minutes) and started her on IV fluids only because I BEGGED them to and threatened them that I would go to my work (next door) and pull a bag myself if they didn’t administer it to her.

What sort of hospital doesn’t start IV fluids on a patient that is actively throwing up, not eating, not drinking and completely lethargic?

THIS ONE does apparently.

We ended up getting everyone involved. And it was a shit storm. The managers, the directors, the patient advocate, the surgeon and residents, the nurses…everyone. I wanted them all in the room so I could share with them my thoughts, my anger and frustration on how they are (aren’t) taking care of our baby. I looked them in the eye and asked them “what would you do if this was YOUR child laying in this bed?”

After that “STAT” CT scan was done, we of course heard nothing. For hours! And I kept asking the nurses over and over and over again. What is the point of something being STAT if no one tells you a thing? Oh! It’s another way for the hospital to make more money! Anything STAT is expensive. Super expensive!

I just so happened to open our door in our room to see the neurosurgeon leaving with his jacket on, when we stopped him and asked what the CT showed and if he was going to alert us about it. He had a discheveled look on his face and I said: “Oh God please tell me! Can you show me the CT please?”

Thankfully the blood around her skull had absorbed (most of it). Which left her with (unfortunately) with TWO blood clots.

I aked him I (of course working with adults and not children personally), what about blood thinners? This is usually the method of treatment (in adults). But not in toddlers because they’re toddlers! They fall, it’s natural…it’s impossible to start them on blood thinners. So if not that doc, then what was the solution? What do you suggest? He then told me IV fluids. Lots and lots of IV fluids. OVERLOAD her on IV fluids. I stood here like a deer in headlights. Pissed off. Ready to scream.

We had only been BEGGING for IV fluids that ENTIRE DAY! He told me that IV fluids would help break up those blood clots in her head and hopefully everything will be okay. Worst case scenario: stroke.

I was sick to my stomach.

Stroke in my 18 month old baby? He then said yes. So it’s very important that I keep a good eye on her, watch for neurological changes and keep assessing her. And hydrate her non-stop! Do not stop the IV fluids no matter what.

Well, duh! I was going to do that. But wait? Was I all of a sudden an employee there? Because it sure the hell felt like it. Regardless of their plan or what they said to me, I know what I wanted and I knew what needed to be done and it took days to get it. Unacceptable. Days in the hospital = lost days of money made at work and hospital bills adding up.

I just needed someone to advocate for me to get it done. So sad and disappointing that I had to have the director go down to pharmacy to pick up the IV fluid when it was ordered because the nurses didn’t. It was ordered but wasn’t started for a day later. So I contacted who I needed to to get the answers I needed. And most recently, we received this letter in the mail:

I call bullshit to all of this. A meeting to talk about what had happened and how they can make it better? How about education? How about going back to school. How about COMMON SENSE!?

Only because I work for a huge hospital, I know how this whole thing goes down. NOTHING is every done. Nothing every changes. It’s the same old story. But each and every time that one of my children is admitted to the hospital and what needs to be done is not done, you better damn well believe from here on forward, I will do it myself. I am their nurse and advocate for life.

Juliette woke up every single morning in the hospital throwing up. Sometimes after the resident came in and flipped and flopped her around and sometimes it was in the middle of the night right before they came in at 6:00am to startle her. They never even gave her a warning. They scared her each and every time by picking her up and moving her around just to quickly get in and out and move on to the next patient.

When we were discharged home after that third day of her throwing up, she ended up throwing up three times after we put her to bed in her crib. We changed her sheets twice and finally moved her into bed with us. After she threw up a third time, I paged neurosurgery in the middle of the night (from home) and they called me back immediately. My main concern: should I bring her back to the ER? He then told me that they would just to IV zofran and IV fluids. But that this was a normal response to post-concussion. I stopped frantically packing for the hospital and allowed her to play on the floor with toys for a bit. She seemed a bit dizzy but over the following next few days, she perked up more and more and has become more of herself.

Thank you Shelby for being such an amazing friend and helping to take Josie overnight and for a day. You’re kind heart never goes unnoticed. I promise. We love you so much girl. You will never know how important this was for us and how much you mean to us.