Anxiety

I went back to work last week After 4 1/2 months of being off... it was definitely an adjustment. My first day could have gone a lot better. I forgot my breakfast, the coffee shop changed it's hours so they weren't open yet, I turned the wrong way, I was floated to another unit, and I forgot my passwords to chart and pull drugs. By 7:30 I thought I was doomed. It turned out to be a pretty decent day though.

Getting back onto my actual unit was where the challenging part was. Not to be overly dramatic, but that's where I was when I got 'the call.' I get flashbacks of that day. When I walked to my car after my first day all I could think was that the last time I actually walked here... Todd was perfect and healthy. I'd like to hope that it gets easier... hoping that it's sooner rather than later. I try to walk out with people now so that I'm not alone with just my thoughts.

 I don't mind people asking about me, how I'm doing and how Todd's doing. It's definitely nice to have adult interaction and actual conversations. But when the conversation isn't focused on me and the only thing I have to add has to do with bringing Todd up, I feel awkward. I literally have nothing else to talk about. I don't want to sound like a broken record and I don't want to be all depressing. Overall good first week back to work. I have amazing coworkers :)

The next topic of conversation becomes the wedding... it's the only other thing going on in my life. Even that gives me so much anxiety though. I feel like I get criticized for continuing to plan it and go through with it. I'm terrified of upsetting people. I'm terrified of fighting with people. I feel guilty that I take time away from Todd to do wedding things like go with my mom to buy her dress or go get a slip for my dress... but this is the one and only thing I have to look forward to right now. I don't see why I should have to give that up. Yes, some things will have to be modified, but it doesn't mean it can't still happen. He's not acutely sick anymore. He's stable. He will be there and he will participate. Not to mention... a lot can happen in 4 months.

I want to feel happiness again. I want to get excited again. Perhaps I'm overly sensitive, but I feel like every time I find a light during all this darkness someone finds a way to dampen it. I also feel that I have a right to be sensitive. Not forever, but it hasn't even been 5 months... we haven't even been living at home for 2. I deserve time to adjust and process all of this. 

Hoping this emotional roller coaster will someday become much less jerky. 

Non Pity Party Post

I set up this blog so that I could vent/release my feelings out into the world and people could 'choose' to read or not... I think I may have turned this page into a pity party for myself. This was not my intention, but I do find myself more willing to write when I'm sad and depressed rather than when I'm happy and energetic. 

As of lately I just feel drained. I wake up tired. I go to sleep tired. I try to push myself to do things for myself, but I'm just exhausted. I'm exhausted, but then I find myself lying in bed, restless and awake. 

I have frequently visited the thought of 'what if he didn't make it' or 'would it have been better than having a brain injury' .... the conclusion I have come to is that being able to cuddle with him and build a fort over him and watch him laugh as my shoddy fort comes falling down on top of us is much better than visiting a grave... any day. He still brings so much happiness into my life. He laughs so easily. He smiles at me. He shows me that he loves me. No amount of pain in the world can trump the feeling I get when he smiles at me. 

Last night, as I mentioned earlier, I built a fort. Just like blankets and chairs, but none the less a fort. I was underneath it with him while we watched a movie (Tangled, I think)... I started telling him 'I love you' ... he started trying to mimic my mouth motions and blew air out at somewhat appropriate times. You could tell he was trying. 

Yesterday morning, we had physical therapy. They placed him on a ball, shaped like a peanut, and had him facing it, leaned over it, on his knees. Hopefully I gave a good description of the position he was in. I had Frozen songs playing to try to provoke him to hold his head up. Although at times I thought it was spasms as his therapist kept telling him to push/rock etc it seemed to become more consistent. She would tell him to then he would. I try not to let myself read too much into these things because I don't want to be disappointed... Todd was following commands the day after his arrest... then a few days later he wasn't. I don't want to get my heart broken again. But this is encouraging. He also initiates some pedaling on the bike. 

Things he does seem to be more purposeful. At the same time... I know he is aware. Just because the therapists and doctors can't measure it doesn't mean that I don't believe it. I know when he recognizes something I say, or a joke from before, or an event from before... but, is this utter torture for him? To know who he was, what he could do... and to know how limited he is?

I got to take him swimming. He loved that! We will continue to do this and hopefully he starts relaxing more with it. I miss this kid telling me jokes and annoying me at 7 o'clock on a Saturday morning... what I wouldn't give for those days again... but in the mean time... I love how much of him I have now :)

Hope for the Future

I've had a lot of different things inspiring this post.

Of course, my ultimate hope is to have the same Todd back.... this just simply is not going to happen. I have researched and researched and have not found a single success story in which I would be happy with the outcome. 

There are kids that get physical mobility back... there are kids that get thought process and learning back... but no kid gets everything... how do you decide what you think would be best? I feel like mentally, Todd is completely there. The looks he gives us, the expressions... they are all appropriate for the situation. So do I wish he was physically better? Yes... of course. I want him to chase me around again. But, then I hear of these kids that are so mentally altered that they are committing violent crimes against not only their families but themselves too.... do I really want Todd to struggle with this? 

What do I want for Todd? I want him to love. I want him to live. I want him to enjoy himself. I want him to succeed. I was never able to picture Todd as a teenager or an adult... maybe because he was no where near either of those things... but, it makes me wonder. I wanted to give him a future, a life. I worked my ass off through nursing school not just for myself, but mainly for him. I knew that I would always have a job, regardless of whether it was one I wanted or not.... but I could provide for him no matter what. My ultimate goal was to take care of him... and now I feel like a failure. 

How do I stop feeling this way?

Right now... I feel like more of a caregiver than a Mom, a roommate rather than a fiance... I've lost my own personality, my own being. I feel like all I do is support everyone else. I'm not working, so my nursing degree is just sitting there staring at me... Who am I? How do I quit feeling like I fail at everything I touch? 

Todd deserved so much more... he didn't deserve to go through this. 

I don't give up hope because to do that would kill me.... and Todd deserves every chance this world has to offer him. I will fight to find any solution there is to this devastating injury. 

Faith

I recently read a blog written by another Mom with a child going through something similar to Todd. She spoke about how her faith was questioned and challenged. Luckily for her, it seems her faith only grew stronger with what was going on with her child... my experience was somewhat different. 

I started moving away from religion around the time my parents were going through a divorce. A time when we needed our church the most. We were practically shunned. The looks we got. The gossip. It seemed to be just another group of people who were only there for the good times...not the bad. I didn't want to be a part of that. I attempted to attend several other churches, but nothing ever felt comfortable. Even after Todd was born, I attempted to take him to church. The looks and judgement I got for being a young mom... maybe I should have been stronger... but I didn't feel welcome or accepted. I did however allow him to go with his great grandmother to her church every Sunday while I worked. It was important to me that Todd have exposure and hopefully develop a faith of his own.

Throughout multiple experiences I would question how God, this good God, that I was taught about would allow these things to happen. So much pain and suffering. So much unhappiness in the world. This led me to my belief in the universe. A system of balance. I always believed there was something more than just us... but I was struggling to believe the God that I had been taught about. Plus, I struggled with the multiple religions. How could only one group of people know the truth or be right? I believed in the universe. I believed in balance... in cause and effect. 

When this happened... when I was sitting in that emergency room. I prayed for Todd to be saved. I felt guilty. How dare I pray selfishly after not praying or anything prior to this for years. I didn't realize what I was praying for then. I didn't realize that by saving him that he would be introduced into a different life when he came back. Did I really pray for him to be saved just to suffer? Was I being punished for selfishly praying? He doesn't deserve to live like this. He deserves so much more. How is it okay to allow this to happen to a child? Someone so innocent. 

Recently I've struggled adjusting. I feel like I do well during the day time, when we're out and about... but in those late hours and early morning hours... I cry. I miss him terribly. I've started to pray again... again feeling selfish. During one of these prayers I asked for a sign... as I'm sure many people have done before me. I needed to know. I hoped it would be in a way of progression with Todd... it came much differently.

I know this is going to sound crazy, but bear with me. 

One of our neighbors', one of Todd's friends, cat got loose last night. Her mom hadn't told her yet as she was desperately hoping that the cat would turn up before she had to tell her. I was leaving our complex for an appointment and had literally just gotten done thinking, 'How awesome would it be if I could fine this cat for her?' I know the pain of having your childhood animal run away. And I was struggling with feeling incompetent and unable to really do anything right (I always took pride in how well Todd was turning out - so smart, so polite, so fun and loving... but then I even failed at that... I didn't protect him).... It was no more than a second that the thought passed through my mind that I saw this cat. It allowed me to pick it up and take it home. No problems. This was my sign. I know it sounds insane, but it was my sign. My faith may not be what it was... but I still have a little bit left. I can build on that. 

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. 

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.

Exhaustion

We finally made it to rehab. I don't know if my expectations had been built up or if I was simply being unrealistic or it could have just been that it's been an exhausting experience and journey to get here.

Maybe I just need to process and decompress.

Our ICU discharge day/rehab admission day wound up being a 19 hour day for me. Of course I was up much earlier than I needed to be... I was anxious. The long awaited exodus from the hospital. Not to mention... would it actually happen that day? We were sitting on 'Go' for over a week. I had momentarily forgotten how lucky we were that we had been at Shands so long that our nurses 'knew' Todd. It was utterly exhausting to argue with nurse after nurse about how to give him meds, setup his tube feeds, when to give meds etc... I'm still not sure how I contained myself. It didn't help that they do 3 shifts here. So we go through 3 nurses a day.... having the same conversation with each of them...

Oddly enough the nursing is what left more to be desired... the therapists are amazing. You would think I would be more defensive of nursing since it is my profession... maybe that just means I'm overly critical... or maybe it doesn't matter because this is my child we are talking about here.

This whole situation is such a giant roller coaster. I have really good days... and really bad days. Yesterday was a bad day. Simply for the fact that I'm exhausted. I don't have patience to begin with. The little I do have goes out the window when I'm tired.

I know typically, after a traumatic experience, patient's families need a lot of education. Not to say that I don't but, please evaluate what conversations I have had already and haven't. Drilling it into my head that my son has a brain injury and that it will be a long time before he recovers, if at all, is not necessary. I promise you I'm aware.

'What type of equipment and therapies were you using at home before hospitalization?' ... Do your F#$K!N& research! I had a perfectly healthy child before this. READ HIS CHART! It says on the first line of his health summary that he was a perfectly healthy child that went into cardiac arrest. So many people have ASSUMED he had deficits before this. No. No he didn't. He was one of the best students in his class. He was constantly outside running around with other kids. Playing sports. Had no social issues. Maybe too social if nothing else. He was absolutely PERFECT... this causes me to have to go and explain what happened, everything we did to try to prevent this... essentially causing me to relive everything. I'm never going to be able to cope and deal with this if you don't do your homework and at least read up on what happened. It amazes me the amount of health care professionals that will walk into a patient's room without reading their chart.

I am over the neuro storms. I hate the word. I hate the concept. I hate that they exist. I hate everything about  them. We finally got him on an amazing medication regimen that was perfect for therapy. He got his nap in between morning and afternoon sessions and he was alert and interactive during the right times. All of the times got messed up during the transfer and it has taken over 24 hours to reorganize everything. So yes, he is going to be more agitated. His meds aren't being spaced how they were. We were in the ICU for 72 days. Do you know how long it took us to find a good schedule? Yeah... don't go messing that up. Then, before we get everything back in order and you come in and see that he's agitated don't say to me, 'Oh! Is he still storming?' NO. HE HAS NOT BEEN STORMING FOR OVER A MONTH. Yes, he has been agitated. Wouldn't you be if this happened to you? Brain injury or not? So when his meds were given at an inadequate time and the nap he needed got interrupted to recast his feet which is painful and then you want to come in and do a cognitive assessment... of course he isn't going to cooperate as well.

I just want to take him home. I'm so excited about the therapies and everything, but as far as giving his medications, feeding him, activity... I just want to go home.

I miss him waking me up in the mornings on the weekends. I miss the snuggling. I miss him calling me Mommy. I miss the crazy things he used to say. I miss his happiness and energy.

Embracing the Situation

It is really hard to wrap my head around what we have gone through the last 9 weeks. 9 weeks. It has been 9 weeks since this happened. It feels like forever ago but, also like it was yesterday. Those feelings are still so raw. Every time a new child comes onto the unit and I see the family I relive that night. What I felt. What they are feeling. It's awful.

I have many moments of frustration. Anger. Throwing myself a pity party (that usually stays in my head). When ever I go down the pity party road I remember that this is so much worse for Todd than for me. Cue reality check. I've been brought back down to Earth and know that my role is to make the most of this and give him the best care, love, and life he deserves. 

I'm going to 'Embrace the Situation'. 

We have to make a new normal for ourselves. Todd, Me, Brian. Everything will change. Everything has changed. I've searched and searched for the silver lining. For something. They say you can find happiness in every situation. I've been looking. I think I've found it.

Right now, the source of my misery is being stuck in this hospital. They've done what they can do. It's time to move to the next step. Rehab. We've been waiting and waiting for this transition. I've heard such wonderful things about rehab in general and the one we are specifically going to. I am ready for this. I know Todd is ready for it. Poor thing is tired of laying on his back. He wants to sit up all the time and start moving, doing things again. This wouldn't be so bad if I didn't have to support his weight. I can only balance and support him for so long before I start hurting. I know Brian is ready for it. I know he hates being away from us. 

When Todd had the surgery to implant the AICD they had to crack part of his sternum. It was only the bottom part, but he has had to be on sternal precautions ever since. They recommend 6-8 weeks of precautions. Sternal precautions essentially means you have to be careful how you hold him, pull him, maneuver him so as to not pull apart that bone. This has made stretching and therapy somewhat more difficult. The main thing that it affects is his ability to lay on his stomach. He is tired of laying on his back and on his sides. I can tell when I'm holding him and we tilt and roll that he wants to just belly flop onto the bed and stay there. A few more weeks.... a few more weeks and he can. 

This is how I'm embracing the situation.

I am so excited for tummy time. Any of the moms out there know what I mean by this. This is how your child learns to roll over, hold their head up etc. All things Todd has to relearn again. I know this sounds absolutely ridiculous, but I'm ready to be home with him where I have our carpeted floor, blankets, large beds, a couch that I can situate him more comfortably and therapeutically. Tummy time is what I'm hanging onto. He's already holding his head up better and better everyday. But, I think laying on his stomach and being able to stretch out and even roll him around is going to help so much. If nothing else he'll enjoy the stretch and freedom. 

I've even picked out the blankets I want to use. 

It has been hard for me to accept that he has reverted back to an almost infant status in some respects. His only way to communicate is to cry. So I have to guess at what he wants/needs. Luckily he still understands what I say to him (at least I think he does) so I can at least make it seem like I'm not doing all of this just to torture him. But, I used to joke around with him, pick him up like a baby and rock him and say 'You're so big, you're not my baby anymore, what happened?' He would just laugh and laugh. Sometimes make baby noises back at me to play along. Well, I get to have Baby Todd back. Maybe not in the way I joked about wanting, but I do get the baby aspect back to a degree. I get to use all the stimulating baby toys, classical music, educational shows etc. I get to play those ridiculous games with him that teaches him to be aware of his body. The fun things. 

I have managed to get myself excited for this.

I know there are going to be set backs. Hard days. All nighters. Diaper changing. But, I had to find something to hang onto. 

Mommy for the Win

We've had a pretty uneventful couple of days since he laughed & smiled. We got a few days to relish in that :) Of course once he laughed and smiled again... we automatically jump to, 'Hey, maybe he'll laugh and smile all the time now.' Of course this is not the case. But we keep hope that we can see it at least once a day... we did yesterday and that's good enough for me. It's a long road and you have take pride in the tiny moments and accomplishments.... which brings me to the point of this blog.

Even as a nurse, there are only so many things I can do that greatly impact the course of all of this. It is what it is... you have to go though the motions and deal with each step and each event as they come. We've been struggling with him being all congested and having all kinds of junk in his mouth and the back of his throat... his lungs are fine. No matter how many times we suctioned out his throat, nose, and mouth there was always more. I started to worry again that he wouldn't clear his airway and blah blah blah and we would start seriously having to consider a trach again. As Gru says from Despicable Me, 'LIGHTBULB!' He was on allergy medication at home before all of this... perhaps these are all from allergies... Yes, we're in a hospital, but the allergens still make their way in. I believe he got his first dose 2 days ago... I didn't notice how clear he had been all day and all night until Brian mentioned it to me this morning. Wow. That's exactly what it was! Yes, I have to give myself a pat on the back for that one... Mommy for the Win.

During this whole situation it's been hard to talk to people about what's going on. Even other people who have had sick children or kids in the ICU. It's different. A brain injury is so different than anything anyone could ever experience as a parent of said child or even as the person themselves. As I'm sure there are many other conditions and situations I still wouldn't be able to relate to. I found a support group through Facebook specifically for parents of children with brain injuries. Best decision I've made in awhile. These are some very smart individuals that have tried everything and have researched everything just like I've been doing. They have success and failure stories. Not only are we able to discuss different therapies and treatments, but also all the feelings and emotions that go along with this type of injury. It's so nice to know I'm not crazy for having some of the thoughts that cross my mind. I've always heard of melatonin supplements to help you sleep. I've never personally tried it, but I've heard of people who have. Apparently, it's a fairly common medication that brain injury patients take to help them sleep. Todd hasn't been sleeping through the night, he sleeps mostly from around 5am-12pm... not the right time. He's already on Valium, and that puts him out, but we don't want him totally zonked... we need him to wake up and start doing things too. He needs to participate in therapy. Both times we've stood him up he has slept though it lol. I brought this idea up to the team, and of course they were okay with it because it wasn't a narcotic lol. We gave him his first dose last night... All 3 of us slept like babies... it was the first night in a LONG time that we all slept a decent amount of time & Todd woke up wide awake as opposed to still being pretty groggy. Again, Mommy for the Win.

I don't mean to brag too much, but I have to feel like I'm doing something. So often I feel like I'm just sitting, waiting around. I felt so productive. So accomplished. 

The rep from the rehab hospital, Brooks, came by on Monday to see him and talk to me about their program. Luckily they came during therapy. They saw him at one of his best moments. They sounded very optimistic and said they would go ahead and start reserving him a spot. He's on the border between the 2 programs they offer. He's a level 3 on the scale right now which only qualifies him for 2 weeks of therapy then home until he 'emerges' more, but if he will start doing things more purposefully and follow commands he is automatically a 4 and qualifies for much more therapy. I feel like he could be a 4 if we could get him off the Valium and some of the other medications that sedate the snot out of him. Fingers crossed. 

Mama Lion

I have an alter ego. Brian has named her 'Mama Lion.' She comes out whenever I am tired, frustrated, angry, irritable, determined, or overwhelmed with any other negative emotion. She has been around for awhile, but I think ever since we have been in the hospital she has been more of a constant in our lives.

I believe Brian chose the name based off the book ' Mama Llama.' But since Todd is a lion, lion head, lion heart.... that makes me Mama Lion. Not to mention I kind of act like a wild lion...

I am a very passionate, feeling, extroverted person. Once upon a time I was ashamed of it and often had people complaining about it, but I choose now to embrace it. This type of personality is what got me through life. I have a problem with thinking that my way is always better and getting irritated when people do things differently (even if they are just as efficient). Brian is a very smart person as well. He has learned to do things in different ways than I have. Naturally... we butt heads. Luckily, he is a very passive, go with the flow, roll with the punches type of person. Otherwise, we would either A) not be together or B) have killed each other by now. I do end up apologizing in the end... normally.

Now that we have been in the hospital, which, for the sake of keeping with the theme, is my natural habitat, I am a bit overbearing at times (most of the time). We do a lot of the hygiene, cleaning, daily care etc for Todd. When it comes to doing these things, since this is what I do for a living, I think I know best and I can be very critical. Unfortunately, Brian usually ends up being the one these critiques are aimed at. Fortunately for me, he attributes my fits of rage over not putting the diaper on correctly or laying down the linen perfectly to my Mama Lion personality. He brushes it off... How did I find such an awesome man?

Then there are the times where he gets lucky. My fits of rage get directed at the nurses or medical team, not him. Mama Lion comes out to play when I don't agree with something or when I'm sitting here watching my child's condition deteriorate. No, I do not work in pediatrics. No, my specialty is not cardiology. But, I know my child and I know ICU nursing. That's all I need. Yes, the regular Lauren will ask questions and make suggestions first. But when that fails... all bets are off. Mama Lion comes out and takes care of business.

Mama Lion has been quite productive with making sure Todd gets adequate care, but she's also caused me to have to apologize to a number of people. Most of which have been pretty understanding (thank god).

I have fought hard to give Todd the best life I can. I fought through the end of high school. I fought through college. I fought through nursing school. I fought through some pretty crappy beginning of career jobs.... & I'm going to keep fighting for him.

Educate yourself.

Everyone has asked whether or not my knowledge of what's going on is a good or bad thing because I am a nurse in an ICU at this hospital. It's a double edged sword... at least for me. For Todd it's a blessing. 

We are all people. People are not perfect. We make mistakes. We under perform. We miss things. We overlook thinks. We over analyze things. No one person can be blamed or held accountable for not being perfect of for anything I'm about to say. It is simply the truth. It happens in every hospital, with every nurse, doctor, respiratory therapist etc. It happens in non-medical fields. You make decision on your best judgement, with the information you have in front of you. That decision may not always be right, but you have to make one. No one would ever get better if you waited around to make a decision. Every person has different experiences that lead them to their own decisions. I trust my child with the team here. I trust their decisions, but that doesn't mean that I blindly agree with everything they say. I think about it. Go through my own experiences. I ask other nurses and doctors that I'm friends with what their opinions are. I research. Even medications/conditions I'm very familiar with... I've researched. I've educated myself.

Shortly after extubation, Todd was not coughing. He showed no signs of even a minor cough. This is potentially a very serious problem because he isn't protecting his airway. If you can't protect your airway your lungs are not safe. You are at risk for aspirating saliva, vomit, blood etc... anything that may wind up in your mouth. This leads to further lung complications. The fix for this would be a tracheostomy. They would cut a hold and place a tube directly in through the neck/throat thus bypassing this area. He would breathe through this hole. In Todd's case, he wasn't coughing because he had something called 'laryngomalacia.' This is where the opening to your lungs is soft and not functioning properly. This was confirmed by the ENT team. They requested that we wait a week and see if it improves before we start talking about a tracheostomy. I was okay with that. I didn't like the idea of the trach, but I knew we might potentially need it. Later that day I was approached by another doctor that had a different opinion. He did not think we should wait a week. He did not think that he would improve. He attributed this problem to possible nerve/brain damage from the hypoxic hit Todd took during his cardiac arrest. This was on Tuesday, he wanted the trach placed on Friday... I requested to at least have the week that ENT wanted. He granted me that (even though they still kept Todd on the OR schedule for it). In my head, I figured the problem was due to trauma to his throat during intubation. He was traumatically intubated in the field. Then the tube was switched out at the next hospital and then we also had a failed extubation with reintubation. Todd's throat went through a lot. I requested to speak to Neurology. I wanted to know what they thought. They met with me the next day, Wednesday. They agreed with me. It was due to trauma That was enough for me. The next day... Thursday, Todd coughed. The nurse and I looked at each other. We weren't sure what to make of it. It only happened a few times that day, but it did happen. Friday... the day they wanted to put the trach in, his cough was stronger than ever. This was also the day that he smiled. This was a sign to me. He was getting his motor function back... he was getting the cough/gag reflex back. Saturday... he laughed. By the time the following Tuesday rolled around and ENT was back to assess the situation Todd had significantly improved, but we still needed to know. ENT used a scope to actually look at Todd's throat. They would be the ones to give the best idea of what was needed. They said the trach was not needed. I have never been so relieved in my entire life. Todd still does not have a trach. That was 3 weeks ago. 

We had a series of unfortunate events, but that's life. The next issue that came up was Todd's feeding tube. He hasn't had a surgically placed one yet, but has one going through his nose into his small intestine. To make a long story short, the tube was not functioning correctly, but no one wanted to consult the team that places them because it would flush with water. Todd wasn't getting his medications. They were backing up into the feeding bag and the line would explode and there lay his medications in the floor. We couldn't give him another dose for risk of overdosing... we didn't know how much  he actually received. This was not okay. We had his neuro storms under control. We had a great couple of days. They started to get worse again because he wasn't getting his medications. We finally convinced someone to call the team and the tube, in fact, was not functioning properly. They replaced it. 

According to the literature, neuro storms are fairly common in brain injuries. I've had brain injury patients, but I never experienced this with them. They are also very hard to control and treat. It is a very delicate balance of medication and it has to be individualized for each different patient. I don't know all of this because I'm a nurse... I know this because I did my research, because I'm playing Mommy right now. I looked into every possible solution. Every possible medication. I brought my concerns, questions, and suggestions to the team. They used some of them. They worked with me. Todd no longer has severe storms. 

Todd has a cardiomyopathy. He is a cardiac patient. Cardiac patient's have issues with fluid. I don't work with many cardiac patients, most of mine are other injuries associated with trauma. This is not my area of expertise by any means. I had to do research. I had to learn a few things. Knowing your child is one thing you trump the doctors/nurses on. You'v known your child. You know what they normally look like. You know when something isn't right. Something wasn't right. Todd was getting puffy. His face was swelling, his belly was swelling, his arms were swelling. He didn't look gigantic, but he didn't look like Todd. The only thing I could focus on was his fluids. I could tell he was getting too much, or at least that it wasn't staying in the right place. As a nurse you have to advocate for your patient... as a mother, you have to advocate for your child. He needed his fluids cut off, he needed diuretics. He was going into congestive heart failure. Luckily we had an amazing nurse that night that was specifically trained in a cardiac ICU. She jumped right into action the second I said something wasn't right.

Having knowledge helped me understand what was going on so much better. It helped me understand the terminology. It helped me in my research. It helped me advocate for my child. It helped Todd. Educating yourself, being involved, asking questions, researching... these are all things any parent needs to do. As a nurse, it's kind of the same. We are with this patient for 12 hours straight, we are constantly in that room. The doctors only get a snapshot when they round. It's the same thing. Yes, the nurses are in here a lot, but as a parent... I'm at the bedside 24/7. I notice the subtle changes that maybe someone else might think was him just being a chunkier kid. 

I am so grateful that I went into nursing, that I work here at Shands, that I work in the department that I do. All of those things combined helped me to be a better mother for my child during this. You don't have to be a nurse though. I hope to anyone that reads this, to anyone that ever experiences a family member in the hospital that you will participate, educate yourself, advocate. You have no idea how much you can actually help. 

(for my Dad in reference to the game today)

Leaving

I didn't leave the hospital for over two weeks. The most I did was walk outside or walk to the other tower where my unit is. I couldn't leave. I couldn't be that far away from him. I was told to go home. Get some rest. Sleep in your own bed. Shower in your own bathroom. Go home? That isn't my home anymore. They say, 'home is where your heart is.' My heart was not there, not in that building. My home is with my child, my fiance, my dogs, my cat... my home is now in this hospital. Luckily for me the hospital wasn't a foreign place to me. Yeah, it was a different unit, but the equipment is the same, the processes are the same, and I was treated like family by the staff. I was one of them, one of their own. I already got the call once to come rushing to the hospital, I didn't want to get that same phone call again. I'm more comfortable here, more relaxed... at ease. Fortunately I've learned to tune out half the alarms. Something called alarm exhaustion. Lucky for that.
         Once I could tolerate the idea of leaving I went on several errands with Brian: to the bank, to pick up food etc. I wasn't ready to get back in my car. I wasn't ready to see the dumped out bag and complete mess that I had left from rushing to the hospital. I didn't want to see his car seat. There was still sand in my car from going to visit my mother that weekend at the beach. I knew I'd get upset. But, I started going places on my own. Not far. I went to the bank on my own. I went to the store. I gradually got stronger and braver.
          I knew at some point I would have to go home. I knew it would feel empty. I knew how I'd feel when I saw his room. At first I decided I wasn't going home until he was with me. After 3 weeks... that didn't seem very plausible. At some point I needed to face it, I needed to face the feelings. I didn't know if I wanted to do it alone or if I wanted someone with me. I didn't know if I wanted to spend time there or if I just wanted to run in and run out. I was already planning to go to the bank that day and on my way out one of Todd's nurses encouraged me to go get my nails done. To do something nice for myself. There was a nail place across from the bank, I figured I could manage that. Just as I was leaving I got a burst of courage. It was time. I needed to do this and I needed to do it by myself.
          It felt emptier than before we moved in. So still. So lifeless. Todd really did bring the life into our home. My cat has still been staying there, she's very self sufficient, she probably enjoyed the vacation from the dogs. She came rushing to the door to greet me. I laid in the floor with her for a few moments. She's a very affectionate cat to begin with, but she was so loving, so comforting. I carried her with me upstairs. I went straight into his room and sat on the bed. So still. I burst into tears. I allowed myself to feel what I needed to feel. I let myself cry. I let myself reflect over the past three weeks. All that has changed. All that has happened. What was to come. I was overwhelmed with thoughts so I geared my focus on what I wanted to bring back to the hospital. There were a couple things I had asked people to get, but no one could find. I found them of course.
         I told my cat goodbye... poor thing, I only spent fifteen minutes there. As I drove away I felt somewhat liberated. I was no longer scared to go home, I was no longer avoiding it. It's not a place of comfort right now and I can accept that. It is what it is. It houses our things; ready for us to pick up where we left off.
         I've been back several times since then. Sometimes just to grab things, switch out clothes, check the mail, see my cat etc. Each time I'm able to stay longer. It still won't be home until he's back in it. He's that magic ingredient. He's the last piece to the puzzle.

Community Support

Not that this is the way you want to make acquaintances and life long friends, but I have to say that everyone has come together for us. Even people I least expected it from. I don't know if it's just a country music song or if it's an actual saying, but 'You find out who your friends are' is one of the truest phrases I've ever heard. When something tragic like this happens, the real people, the good people come out. Not just the ones that you expect, but the truly good people out there.
        I used to be a fairly pessimistic person with a poor outlook on the general population. I felt like everyone was only out to better themselves or their situation without a care in the world as to how they were affecting others. So many people have proved me wrong. I've never been so happy to be wrong in my life. I am also wrong on other accounts. There are people I expected to be here that aren't. People that I thought would be there no matter what. Again, you find out who your friends are. I don't dwell on that much. I have too much support and love around me to let those few people get me down.
          We still have doctors and nurses from the first hospital texting and calling us to find out how Todd is doing. He was at that hospital less than an hour. These are truly good people. Some of the paramedics are keeping up with him through my Facebook posts. The staff at O2B have come by in mass, called, text, and even thrown fundraisers for Todd. Friends of friends are donating money to us to help pay our bills and medical expenses. Who knew there were still good people out there?
          There are people that check in with me on a daily/weekly/biweekly basis now that I hadn't talked to in months or even been very close to. I don't know what I would do without these people now. I look forward to their questions. I look forward to hearing from them. Though some of them I know so little about their lives, mine is an open book right now and it doesn't bother me.
          There are kids that Todd knows that want to do fundraisers. Twin girls that he is friends with are setting up a lemonade stand for him at their mom's garage sale, their idea! Another friend of a friend is making necklaces to sell to give us the proceeds, this woman doesn't even know me. My father works at Ford Motor Company at the headquarters in Detroit, MI. They held a bake sale for us. The profits were tremendous. I've never met half of those people. There are truly good people in the world all the way from the Elementary school to the older generations.
          I work with a lot of people, from nurses to respiratory therapists, to techs, to doctors, to PT, OT, etc. So many of these people, some I rarely talk to, some I thought didn't even like me, have reached out to me. If there was ever a time to feel alone.... this is NOT it. There are still moments where I feel alone, lonely, small, and insignificant... but, I think that goes with the situation. You're just going to feel like crap sometimes. But those crappy times don't hurt as much, don't happen as often, because I have all of these people around me. I can never thank everyone enough. When I'm too exhausted to focus on Todd, his illness, his situation... I'm able to focus on all these people. All these actions. Thank you.

The Other Side

I'm a nurse. I'm an ICU nurse in the same hospital that my child has currently been for the last 5 weeks. Today marks 5 weeks. The familiarity of everything has been a blessing, but also a curse. Everyone keeps saying, 'Oh! It must make it so much better that you know what's going on.' At times, yes, this might be true, other times... this is simply not the case. 
          When oversensitive alarms go off or some minor equipment malfunctions - no I do not jump and go running for the nurse. No, certain things don't alarm me or scare me like they would someone not in the medical field or not familiar with this equipment. In that sense, I am less on my toes. On the other hand, when discussing complications and potential problems - I've seen the worst. I know how that road goes. I know what that means in the long run. I know worst case scenarios. 
          When we were told that it took 8 doses of epinephrine and multiple shocks to get a heart rate and blood pressure back on my child & almost 30 minutes of resuscitation - I knew what that meant. Yes, it's scary for any parent, but the longer it takes... the worse off you are. When the doctors start throwing lab values around and test results that they don't expect you to begin to understand, but you do, it's scary. You know what that high potassium means. You know what that high creatinine means...  All you want to do as a parent AND as a nurse is advocate... advocate for your child - advocate for your patient. You know the motions, you know what to ask for... but you can't. Your brain isn't functioning. You are overwhelmed. All that medical knowledge is there, sitting in your vocabulary. You can still comprehend it. You just can't process and make decisions. It's hard to not try to play nurse in this situation, but it's hard to at the same time. It's hard to take a back seat. I've been lucky though. The team we have has worked very well with me and made sure I was comfortable with all of their plans. There has only been one time that they strongly felt like they wanted to do something that I was whole heartedly against and they respected me. I can't ask for much more than that. 
          We've done the typical 'ICU Roller coaster.' The one I have to explain to my patient's families all the time. 'It will get worse before it gets better, there will be good days and there will be bad days.' I was always confident in telling this to my families. It's so much different on the other side. First of all, I can't even look at these as good and bad days. I'm living moment to moment. Storm to storm. Hour to hour. Two weeks after this happened Todd was smiling and laughing. This past weekend he looked almost as bad as when he first came in. It's hard to see so much improvement and have it taken away from you. I have to remind myself of this roller coaster, but it's hard. This is my baby. This is my child. He isn't an adult like my patients. He's different. No, no he's not. He is going to go through the motions just like everyone else. It's a struggle. 
          The other part of this double edged sword. Since I work here, since it's familiar, since I know all the medical terminology, since I know the general idea of what the next course of action should be... everyone turns to me. I have to again play nurse and translate things down to a level non-medical people can understand. Terms my family can understand. My attention and focus is being pulled in a million directions and I was already in over drive. 
          This has been one heck of a roller coaster. I've learned a lot about myself, my limits, my needs, as well as a lot about pediatrics - oddly enough they are very different than adults. & I will most definitely be sticking to adults after this.