Rhetorical

Most of the questions I pose will be rhetorical. I'm not very good at taking advice. Not that I don't want it or find it helpful, but I find it really hard to execute what I'm being told to do. I usually just have to find my own way and the process of finding it is what makes the solution a success. Like the typical phrase... It's not about the destination - it's about the journey. The answer to these questions is a destination. I'm not so good at arriving at a destination if I don't know or have the experience of getting there. I don't know if that's a character flaw or just part of who I am. 

Hearing 'new normal' has become a very exhausted phrase in the last 3 months. While a very helpful one, it's as annoying as that pop song they play on the radio every other song. I understand this is a new way of life... a new journey, but I'm having trouble getting there. 

How do you go places you went before? How do you do things you did before? How do you reenter the world? How do you simply... live?

Accepting the idea of a new normal was much easier than actually living it. I went to the gym for the first time today. One of the first few things I've done that didn't have a distinct purpose having to do with Todd. He would always want me to wait till he was out of school or out of after school care so that he could go to Kids Club, the day care at the gym. He loved going. My routine used to consist of walking over to that part of the building and signing him in, now I walk into a completely different door. I almost feel like I'm depriving him of one of his truest joys... 

I haven't really had the time to do many things for myself. We've been busy shuffling to and from doctors appointments, going to therapy, giving medications... and to be honest I don't hate it. I actually enjoy this stay at home mommy/nurse thing. I always thought I would lose my mind before. That being said... we've only been home 2 weeks. I'm very good at doing what needs to be done. I go into autopilot. No questions, no wavering - get shit done mode. I feel guilty doing things for myself. I feel like the amount of time I would spend getting my nails done could be spent researching treatments for this, stretching him more, working longer with him. He deserves it. 

I'm supposed to go to dinner with a friend tonight. We're going to a restaurant where the last time I went there was with Todd, Brian, and my grandparents. It's scary. He went everywhere with me. That's how it's always been. Up until 2 years ago when we moved here it was always just me and him. Two peas in a pod. I would say 'Let's still go to dinner and bring him' if I didn't feel absolutely guilty every time I ate something in front of him. Maybe once he's able to eat this will be an option, but until then I feel like I'm torturing him. 

The next milestone will be when I return to work. I'm very nervous about this one. For starters, I will be leaving him in someone else's care for 12+ hours. I can't explain how terrifying this is to me. I've been attached to his hip since the day this happened. Not to mention, I work in trauma. I'm going to be taking care of people that had very traumatic, unexpected things happen to them.... I'm going to have to talk to their families. For one, I do think this experience has made me more empathetic... but perhaps TOO empathetic? I can't be strong for a patient's family if I'm fighting back tears myself because I know what it's like to be in their shoes and the wounds are still so fresh. We'll see what happens with that one. 

I have to reenter the world at some point. I've gotten my toes wet, still not sure what the best method of accomplishing this and desensitizing myself is so that I'm not an emotional wreck every time I see something that reminds me of the past. But, I'll figure it out. 

A day in the life...

I thought I knew what busy was... little did I know what it actually is.

I've juggled multiple things at once throughout my life... I think, since moving to Gainesville, before all of this, that the last 2 years were the least busy of all.

Todd was born between my Junior and Senior year of high school. I was working 4-5 days a week with a 12 hour shift every Saturday most of the time I was pregnant (up until I was placed on bedrest for premature labor) and also going to school all day, completing homework and assignments etc. I kept my grades up. Six of the seven days a week started at 6am and ended at 10pm or later (my Saturdays were a little different, I got to sleep in a bit). He was born on June 14 and I returned to finish high school the beginning of August, on time. Luckily I had stacked up on credits and was only required to go to school from 8-12 and was able to work from 12:30- 5. I thought this was busy. Juggling school, work, a baby, college applications etc.

College was roughly the same scenario juggling a child, studying, class, but this time I was working more like 30-40 hours a week. I was a waitress for the 30-40 hours a week the first 2 years of college. I managed. Once I got into nursing school I knew I wasn't going to be able to keep that up. I switched to a new, less stressful, better hour job... that also had fewer hours a week I was required to work. I definitely needed the extra time for studying. Nursing school is a killer. I thought that was busy.

I moved to Gainesville 2 weeks after graduation. I spent the entire summer vehemently looking for a job. My first 2 jobs were absolute disasters and I was absolutely miserable. The second one required 12 hours of over time every other week. I continued my job search just has vigorously as when I didn't have one. The time itself was not the problem, it was the demands and lack of resources I had to do my job. No one would be happy doing what I did... I thought this was busy. I finally landed the job I have now and can't go to the Oaks Mall without thinking about jumping for joy since I got the job offer while I was walking to my car there. Around the same time that I got this job is when Brian and I got engaged. That wasn't too much of a demand since we weren't planning on getting married for a couple of years. I would say this was about the time things started to slow down. For the first time in my life... my life was calm. It was nice.

Then this happened.

I've talked enough about the 3 months we were in the hospital & rehab... we'll skip over that part.

The day we came home I hit the ground running. I had a series of errands I had to run, packages that needed to be picked up, deliveries, home visits etc. Nonstop. The first 3 days are a blur. We've started to find a routine though and it's nice. Tweaking things here and there... it's all coming together.

A day in the life...

Let's say the day starts when I actually get up like it's a new day (6am)

6 am - medications for Todd, change diaper, start laundry, take shower
7am - pack car, check that suction is charged, pack diaper bag, pack for medications needed through the day, eat something
8am - medications again, get Todd dressed, nebulizer if he needs it, brush his teeth (trying not to make him vomit with his sensitive gag), take phone calls
9am - be at or leave for appt, get the wheel chair in the car, make sure the movie is on so he doesn't stare out the window and puke, if he vomits add time for changing and cleaning, take phone calls
10am- medications, hope appt is over, or begin appts, get him in and out of his carseat, in and out of the wheelchair, wheelchair in and out of car, take phone calls
11am - medications, hopefully headed home, it's hot out, hope I have our portable fan with water sprayer and hope the ice cubes haven't melted, oh the doctor decided to draw a lot of blood, crap, I don't have any water or formula with me to give Todd, take phone calls
12pm - medications, give Todd a can of formula, make my list of errands I have to run this afternoon, remember to eat, try to stretch him a bit,
1pm - organzing ducks, running errands
2pm - medications, still running errands
3-5pm - try to do something socially with Todd, walk in the park, around other kids, blow bubbles, walk around the neighborhooh
5pm - medications, think about dinner, grocery store?
6pm - medications, start over night formula, start cleaning the house that I have destroyed throughout the day
7pm - eat? quiet time before bed with Todd
8pm - medications, put Todd to bed, set up camera and monitor, start laundry again, reorganize EVERYTHING
9pm - continue picking up the apartment, fold laundry, put away dishes
10pm - medications, attempt to sleep for an hour
11pm - medications (this sometimes gets moved to midnight to allow for 2 hours of sleep)
12am - medications, sleep
1am - sleep
2am - medications, change diaper
3-5am- sleep hopefully!!!
5am - medications, change diaper - go back to sleep for an hour.

This doesn't take into account that we have multiple doctor appointments in a day and all the fine details that go into executing any of these things. This my friends... is what busy is. And in August I am adding in a full work week on top of it. I think I need the next month to mentally prepare myself for it.

I do also have to say that, even with how busy we've been, it has been one of the best weeks I've ever had. I still have my child here with me.

Assumptions

We all know what 'ASSUME' means.... it makes an 'ass' out of 'u' and 'me'... or so I'm told

I'm a tad bit bitter over this subject simply because I go through this at EVERY doctor appointment, every meeting, every new nurse, new therapists etc.

Please do not assume that my child has been like this his whole life.

One of the most frustrating situations is having to relive and explain over and over again that your child was perfectly healthy up until 3 months ago. That 3 months ago he was running around playing sports, doing well in school, talking up a storm. I'm still adjusting to the new him, the new us, this new life. Some people don't even know that it was a cardiac arrest that caused his brain injury, then having to deal with their shock mixed with my emotions... I'm sure you can imagine this doesn't add up well. For the most part I'm strong and collected (just don't ask the people at Shands pharmacy and lift team guys today, they witnessed a breakdown). Luckily the lift team guys new what happened with my son, the poor pharmacy people thought I was crying over having to pay $12 for Allegra lol.

Anyway...

It's hard to tell people how my child used to be because I desperately want that child back and miss him so much. It just brings out so many emotions. I'm already exhausted, I don't need to be on anymore of an emotional roller coaster than I already am. Be sensitive people, please don't assume.

The kicker is that, especially with the nurses and therapists, that they don't know his story... shouldn't you have looked in his chart before our appointment? At least had a tad bit of an idea of what you were walking into? Luckily we have some really great people who have done this... but of course, you remember the bad experiences better than the good ones.

The other assumption that I have encountered frequently is people talking to him like he's a baby... he is 7 years old! & I don't have any test or what ever to prove it, but he didn't lose any bit of his ability to understand. I have no doubt in my mind that he is completely aware of what's going on and the fact that you talk to him like he is a 2 year old and in a baby voice is just insulting. Just because he can't talk back to you doesn't mean he doesn't know exactly what he would say if he could. I can only imagine how it makes him feel to be talked to like that and not be able to communicate back.

I would now like to take the time to thank everyone who has been conscientious and spoken to him like the age that he is and taken the time to learn or read his chart/story.

End rant.

The Many Adventures of Todd!

It has been a whirlwind of activity since we got home! Phone call after phone call. Delivery after delivery. Home visits. Supply buying. Organizing. Shuffling to appointments.

I'm pretty sure I forgot to eat yesterday. Oops. (yes I know I have to take care of myself too...I prepared better today)

Todd is doing great! He sleeps through the night except when he needs to be changed. He wakes up in the morning and just watches tv until we get up. He gets medications at midnight, 2am, 5am, 6am, and 8am. I was dreading having to get up and thought how will I have the energy... it's not as bad as I expected. I'm much happier at home... doing these things myself. I don't have someone barging in and waking me up every 5 minutes.

He's making leaps and bounds! He is starting to pick up and hold up his head so much better. He also is getting some trunk control back (holding his back and body up). He responds so much better to stretching and exercising with me at home. He stays awake for it. He doesn't cry as easily. I think it's safe to say we've settled in for the most part and are all happy to be home! My kitty cat included!

The hardest part about this is transportation. Oh. My. Gosh. We got the okay to leave rehab. I packed the car. Installed the car seat. I was assured that the wheel chair would fit in my car. I have/had a Ford Edge. No problem for a wheel chair, right? WRONG! I pull up to the hospital. Get Todd in the car seat then attempt to place the chair in the back. I almost had a complete meltdown. It took everything in me not to start crying and just sit in the middle of the parking lot and pout. WE WERE READY TO GO! Todd was in the car! How can this be happening? With some maneuvering, extensive disassembly, and a determined Mom and nurse we got it in. Thank God she came down with me. As everyone knows... check the diaper before you leave. Well, I did. It was dry.... 30 minutes into the drive, it was not. Not only was this a wet diaper, it completely soaked his pants and the car seat.... Let me remind you that I am ALONE, in a packed car full of stuff...  AND in the middle of NO WHERE! Todd is very reactive to when he goes to the bathroom. He does not like having a dirty diaper and he sure as heck let me know. I had no way to change him. I had no where I could lay him down. He's too heavy for a changing table in the bathroom of a restaurant or gas station. What do you do? I couldn't change him. He would just have to wait... (to keep him from screaming) I had to make fart noises the whole way home. I sang the ABCs in a fart voice, I sang Twinkle Twinkle Little Star... let me also remind you that we had an hour left in our drive.... Oh, the adventures of Todd.

This was a major fail.

It took a while to disassemble the wheel chair... it took a while to reassemble it. This is not going to work. We can't do this in the rain, in the heat.... not to mention what if he pees again? I gotta be able to lay him down somewhere. To the dealership we go! So I had to buy a new car. I love my Edge... was planning on keeping it, but the world had other plans. Probably the fastest car buying experience ever! Thank you Dad for everything you did on that by the way! :) In the middle of the process I had to run home and grab Todd so Brian could go to work since he is doing overnights at the moment. (This is where the fun begins) Loaded
him up in the Edge, wheel chair and all and headed for the dealership. All was fine doing the last little bit of stuff. Couple signatures... what ever. We go to transfer the car seat to the new car (a Ford Flex by the way - & thank you to everyone who has donated money! Your donations are what enabled me to be able to do this - otherwise I would have been up sh!t creek ) Anyway... we get the car seat in.... I start to unbuckle Todd from the wheelchair.... projectile vomiting.... EVERYWHERE - out of nowhere! These poor guys - a car salesman and the finance guy are the only ones who were with me. Excellent customer service I do have to say. They helped me clean up my child and the wheel chair... vomit and all. Oh, the adventures of Todd!

We had to go back to Jacksonville today for an appointment to check on Todd's AICD. Everything checked out, hasn't had to fire, capturing well, his heart seems happy! If you can imagine the amount of 'stuff' I have to tote with me for him. Medications - since he gets some every 2-3 hours... of course the ones today were the ones that had to be refrigerated so I had a lunch box with ice packs. Diapers, wipes, change of clothes. 3 ring binder of all his medical information that I have had to put together. The transportable suction canister and machine. Oh, did I mention he threw up on this trip as well? We've determined that a) he doesn't need to be given meds and then thrown in the car b) I had to buy a car dvd player because he stares out the window and makes himself nauseous. (again, all thanks to your donations!)

This is definitely a huge learning experience. Lots of trial and error. But, the whole thing is an adventure and one I'm not alone on! I have Todd! & a wonderful support system! All of you with your donations and encouragement. My family. My fiance.

Until next time...

90 Days

Tomorrow will be 90 days since this all started. It feels so much longer and so much shorter than that all at once. So much has happened, but there has been so much waiting.

All three of us have celebrated birthdays... we've celebrated Mother's & Father's Day... it's time to go home. 

It's amazing how quickly your life can change. It only takes a second. One complication. One mishap. 

It'd hard to think back on that day... on March 18th. It feels like a lifetime ago. But, I get more of my child back everyday. I don't have to work so hard to make him smile anymore. It used to take hours of Brian and I beating up each other with stuffed animals to get even a grin... now he grins when I talk to him about something he likes. He smiles when something he likes happens on t.v.... This is huge. 

When we came to Brooks they had to go though their typical admission paperwork. The same stuff I go through with my patients and families... Do you worry about abuse? What was your baseline abilities before this? Do you have a living will or advanced directive? ... Wait? What? Excuse me... Did you just ask if I had an advanced directive on my child? Yes... yes I do - FULL CODE! I was in absolute shock at this question... once I thought about it for a minute I did realize that some people do have these on their children. Some children are terminal. Some children don't even have the quality of life that Todd has. It was humbling.

He has the capability of being happy. He can show me that he's happy. There is a HUGE difference between not being able to tell and knowing that he can be happy. It's hard to admit to this, and I have before, but there were days... very dark days, I believe while he was still having the neuro storms, that I thought.... I begged for this? I prayed for him to be saved... for this? My prayers were answered only for my child to suffer further? To have an empty life? This is most definitely NOT the case. His sense of humor is fully intact. I have no idea how, but it is. This was one of the things I love most about my child. Always saying the most ridiculous things and finding HIMSELF absolutely hysterical. Even on hard, awful days... he could always make me laugh and smile... without even trying. He moves his mouth more purposefully everyday. He's moving it in different ways... hopefully those muscles are waking back up. He's making great strides with chewing/eating/swallowing... I have no doubt we will be feeding him orally in the near future. He's making different noises and exploring his voice with different tones/pitches/cries... All good things that lead to talking. It can only go up from here. & I know once we're home he'll have a lot more motivation to progress. 

From what I've learned is that a lot of families choose to hide their child from the world when something like this happens. Whether it be it's hard to handle the looks from people, the questions, the difficulty of getting place to place, but I have absolutely no intention of doing that. We were a very active family before this and I intend on upholding that say lifestyle to what ever extent I can. Todd loved going places with us. I'm not going to stop him from that now. He needs the stimulation. This kid gets bored so fast. I should know... he's got my personality. We can still go walk trails... his wheelchair is designed to go outside. We can still go to the beach... I will find some kind of apparatus to hold him up. His life is not ending here. He is still going to be the ring bearer at our wedding. No matter what. I'm determined. 

So many thoughts. So many emotions. You'd think I'd be about to explode, but I'm calmer than I've ever been. I'm ready for this next step... this transition. 

 He got to eat some birthday cake!!

 Last shower in the hospital!!!!

Bittersweet

We finally have a discharge date! Given that everything is set up and ready to go we will be going home Monday!!! I'm so excited to finally be back home and sleep in my own bed. But, the reasons we're leaving are not quite as 'joyous'.

Todd was admitted under a certain program essentially to monitor his responses to the environment. If he progressed during the initial 2 weeks he would be able to stay longer. Unfortunately (& I say this with mixed emotion) he did not progress. 

Yes, of course I want my child to get better. Perform better. Show everyone what he's capable of. But, that's just not happening here. He shuts down in therapy. Pretends to sleep through it. The second we leave the room he wakes back up. It's frustrating. He does a lot more than what they can document because he simply won't do it for them. He responds much better to me, to Brian, to his family. Not to mention, once we get home we'll have a better medication schedule. I've fought a hard fight to even get the medications where they are now, but it's still not perfect. Once I can manage his medications and make sure he gets them exactly when appropriate I think he'll do much better. Plus, I think just being at home, in his own environment will help. He's just not benefiting from being here, even though a lot of kids do, I think right now is just not the right time for him. At least not until we get rid of a lot more medications. 

I absolutely love all of our therapists. They have all been amazing and wonderful and I've learned so much from them. Although I don't look fondly on this experience, I definitely will remember them and what I learned. 

We will continue therapy on an outpatient basis and I will also work with him at home. Although I am not looking forward to getting up in the middle of the night to administer medications, it is worth it. I'll hopefully being going back to work in the next few weeks. This is when we start reshaping our lives, our routines, defining our new normals. It's not going to be easy, but I know we are all ready to be back together as a family in our own home.

It will be much easier, however, to take care of myself from home. When we were in the ICU, Todd was so closely monitored that I could leave him unattended at times to run home, take a shower, pay a bill, meet a friend for lunch. But, there is no monitoring here. They aren't on any vital monitoring except the 3 times a day they check it. If I were to leave him it would be like leaving him home alone to run to the store. That's just not acceptable. I have all my own stuff at home. My towels. My body care. My clothes. I've lived out of a suitcase for almost 3 months now. I'll be able to go back to the gym. I definitely need that. To be able to carry this 50lb child. I'm going to need to be in better shape to protect my back and other muscles. 

Anyway... bittersweet circumstances. But, I think more sweet than bitter. 

Parking Lot Fight - (foul language)

I figured this would be a funny story to share. 

My family is visiting this weekend and I was convinced to get out and have dinner with my mom and brother. I was asked to drive since I was more familiar with where we were going, but I was offered in my mom's car. We get in. I start the car. I look around.... no back up camera. I'm pretty sure I've forgotten how to drive without it. Needless to say... we then got into my car.

Of course it is going to be busy and parking is going to be a pain. It's a busy shopping center and Saturday night. Lucky for us the first lot we pulled into had someone pulling out.

This is where it gets interesting.

Did I notice there was a car in front of me with their blinker on? Yes. Did I think they were waiting on this spot? No. Why the heck would you PASS THE SPOT if you wanted it? I figured there was someone else pulling out in front of them. 

I pulled into the spot and as I'm completing the turn I notice this man has stuck his head out of his window at this point. We stayed in the car for a minute waiting for him to drive off... He did not. He then proceeds to APPROACH MY WINDOW! Are you freaking kidding me? It's a PARKING SPOT! He immediately starts yelling me about how he was waiting on this spot and how rude I am blah blah blah. Given the circumstances of what I have been through and am still going through this man is lucky to be alive. Every ounce of me wanted to take all my anger, pain, and sadness out on this man. 

Yes, I got defensive. Let's start with the fact that you PASSED THE SPOT. He claims he was going to 'back into it.' I understand for a lot of people it is much more convenient to back into a spot... but technically it is ILLEGAL. You are not supposed to. If it's not busy and you have the opportunity to do it... fine. But, this was not that situation. If you are determined to back into a spot at least wait in the appropriate place for the car to leave... THEN PASS THE SPOT to back in. How the hell am I supposed to know that's what this man wanted to do. He was a good 4-5 parking spots passed where this car pulled out. 

I will be the first to admit how irritating it is for people to steal a spot you have been waiting on. When you've been sitting there with your blinker on and they take they're sweet time leaving and someone from the other direction sweeps in and takes it. It INFURIATES me. Still... I do not approach peoples' cars and start yelling at them over it. 

He then proceeds to point out how I'm getting angry and claims that this is because I knew I was stealing it. No... I'm pissed as hell that you approached my car over a parking spot. You are obviously an able bodied individual. You can certainly walk a little further. I considered moving for a second because If he honestly was waiting for it I did feel bad. Although I'm not entirely sure he was... His car was still moving forward as this other car started pulling out. I think he just noticed it right after he passed it and then decided he wanted it. 

Sorry sir. It doesn't work like that. I am the queen of passing spots right as people start pulling out. It is extremely irritating. But nothing I'm going to get my panties in a wad over. 

I MIGHT have considered pulling out a little more seriously had he not yelled at me. After that little performance... I think not. 

This man doesn't have a clue of all the pent up anger and energy that I have boiling inside of me. It won't take much for me to just let it all out on some asshole over a parking spot. Lucky him not having anything going on in his life that he can get so focused on a parking spot. 

Whatever. So we then proceed to walk to the restaurant. He drives around and approaches us again and starts yelling at me AGAIN from his window. Are you kidding me?! Pull the giant stick out of your ass dude! At this point I was still so mad that he approached my window that I looked him directly in the eye, with a giant smile on my face and said 'I'm sorry' and continued walking. 

Lucky for him I wasn't alone. Had I been alone I might have had more of a 'scared' factor going on. Who knows how violent this man might have gotten. Adrenaline was already kicking in. Or if I had Todd in the car. Who knows what I would have done to him. I still wish I could have somehow gotten a punch thrown in there. 

I was expecting my car to be keyed or window busted when I got back.... It wasn't luckily. He was definitely mad enough to though. 

I did however enjoy my P.F. Chang's and lettuce wraps :) I wonder how much he enjoyed his evening? 

After everything that has gone on with Todd it makes you realize what's really important and what really matters. A parking spot is not. 

Snoring

My child is the loudest sleeper... I take that back. The SECOND loudest sleeper. Only second to my father of course. If this is a genetic trait then I would like to take the time to thank you for passing this down our bloodline to Todd. Although it has hindered me from having a good nights sleep at times, it has helped me rest easy more times than not. Even when Todd was a baby I never had to do the whole 'get up make sure the baby is still breathing' routine... I could hear him from across the room.

I still can.

Tonight happens to be one of the nights that it's keeping me awake. Oh well, I'll be thankful for it again once we get home and Todd starts sleeping in his own room. And yes, I plan on making it back into my own bed at some point.

His snoring reminds me of so many memories. Memories from when he was a baby. Memories from him falling asleep in public places. Road trips. So many memories to choose from.

This kid could fall asleep anywhere. In my lap. In the car. Under a bench on the concrete. Half way under a rug. Sitting up in the high chair in the middle of chewing his food. Sometimes I wouldn't even notice. I would turn around for a few seconds and then all of a sudden I would hear the snoring. I remember when I was a kid, we would go on long car rides and my parents would always tell me to go to sleep because it would make it go by faster. I never really slept well in cars. This never really worked for me. But, Todd. Oh, Todd. Fifteen minutes into the drive he would say, 'I'm just going to go to sleep to make it go faster.' He was too funny. He was such a good child. Yes he threw his tantrums, but he was so polite and so easy going. When something didn't go his way he would say, 'I'll just get over it.' Where he got these phrases from I couldn't tell you.

We were looking into getting his tonsils removed prior to all the chaos we've been going through. Even the ENT doctors said they would probably want them out, but he's been going through so much that's pretty far down on the list of things we're worried about at the moment. Nurses would ask me how I could sleep with him being so loud. Honestly, as I said earlier, it's comforting. I don't have to get up and check that he's breathing. In the hospital he was attached to monitors so I could just look up at a screen and know. It's not like that here at rehab. It's not like that in the car. It won't be like that at home. Although the sound is comforting to me, it isn't so comforting to our nurses. Until they got to know Todd several were convinced he was struggling to breathe or in respiratory distress and I would have to wave them off and tell them to leave him alone.

I miss this kid so much.