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. 

Stages of Grief

So we all know the stages of grief. There is supposedly a so called order to them... I do not abide by this said order. I have fluctuated through them all, multiple times, back and forth, up and down, skipping some.... all in a days time... sometimes in only an hour. 

Denial. I think I skipped denial for the most part. If I went through denial at all I think it might have been when I was too shocked to feel/think anything. For the most part I've been pretty realistic about this whole situation. The second they told me they still didn't have him back when I showed up in the ED I knew. I knew the repercussions of that. I see this everyday at work. Perhaps the only denial I had was before they let me see him. Maybe I tried to convince myself they had someone else's kid behind that curtain. Once I saw him the denial was pretty much gone. After that it was all shock and having to remind myself that this was really happening, but I didn't struggle with that a whole lot.

Anger. This one I think I deal with daily. It didn't start till much later after the event, but it's one of my most common feelings. I have no one to be mad at. No one did this to him. I took him to the cardiologist. I had him checked out. Everyone did everything they were supposed to do. There isn't anyone to be mad at. But I am mad. I'm mad this happened to him. I'm mad that my 6 year old son has been put through hell and back. He does not deserve this. He was one of the most loving and caring people I have ever met. Even when I was having to discipline him he adored me and loved me unconditionally. He is so innocent. Why should something like this happen to him? There are plenty of terrible people in the world that this could have happened to, but no... it happened to him. It's not fair. I wanted so much for his life. He deserves a normal, happy life. Not one with constant struggles which is what this has turned into. 

Bargaining. This one started pretty quickly. I immediately started praying to (bargaining with) God in the ED. I can't remember the actual words I used but I remember doing it. I remember begging. I remember screaming. I remember crying. Anything... anything to save my little boy. Then came the other part of bargaining... the shoulda, coulda, wouldas... I have struggled with this one day in and day out. I should have known. I should have pushed. I took him to the cardiologist to prevent this. There were abnormalities in his tests, but nothing that set off red flags... I should have pushed for further testing. I should have known they did cardiac MRIs. I should have... I could have done more. I keep having to remind myself that hardly anyone knows they do cardiac MRIs... I can't beat myself up over not knowing they existed. I still should have pushed for further testing after the abnormalities. I also know, and it's hard to admit, but I continuously beg for more. I begged for him to live. Then to wake up. Then to still be Todd. Now, I'm begging that he eats and walks again. I just want more. Not for myself (maybe a little bit) but for him. HE deserves to get better. HE deserves to walk again. HE deserves to have fun and run around again.

Depression. I know this started during the neuro storms. There was nothing I could do. Nothing anyone could do. I was helpless. What kind of life was this for him? I begged for him to be saved, but for what? He's going to have a miserable life. I begged for his life and consequently caused him more suffering. What have I done? I went through a few days and I still go through spurts of not wanting to talk to anyone, withdrawing, not saying a whole lot. This can be very isolating. People try to find the words to say and all they do is make it worse. No one understands what you are going through. The only people that have a clue are the ones that have had children with brain injuries to this extent. It's not a very large group of people and none that I knew before this happened. I've been fortunate that others through support groups have reached out to me and told me their stories. Stories that were almost identical to Todd's. It's impossible to understand what I am going through if you have not been in my shoes. People try to compare their problems with their children etc.... it's different. It's not any better or any worse. Just different. When people try to relate or try to tell me to just be grateful that he's here it causes a downward spiral into a further depression. Not only have I beat myself up over everything else, but WOW now I feel guilty for not solely being grateful that he's still alive. Is it wrong of me to want more for him? Is it wrong that I want the best? 

Acceptance. I have accepted that he is going to need a lot of care. I've accepted that his life is going to be much harder than originally planned. I have accepted his conditions and their implications. That doesn't mean though that we are going to be stagnant. I've accepted the difficulties and plan on fighting for him well passed this. He's going to progress and I'm going to do everything I can to make that happen. Acceptance isn't giving up and just accepting that this state I see him in is permanent. This is the new norm. This is another hurdle life has thrown at us that we have to adapt to. I accept that. Yes, I still go through all the other stages sometimes, but I have accepted this new life we will have... and I've chosen to embrace it. 

(these were yesterday before the G tube surgery)

Mother's Day

I desperately wanted to ignore the fact that this weekend was Mother's Day. It didn't feel right, not having Todd able to talk to me, us still being in the hospital. I thought that if I didn't go out, I didn't do anything, and stayed holed up in the hospital that it could somehow bypass me. I was wrong.

I got emails, messages, texts, phone calls etc wishing me a Happy Mother's Day. At first I was a little bitter over it... I just didn't want to hear it, but after a while it felt better. I needed to hear it from other people since I couldn't hear it from Todd. For what ever reason I felt like there was nothing to celebrate... at least not me. I did tell my mother's (all 3 of them) Happy Mother's Day... I didn't ignore them, but I didn't want to have anything to do with it being about me. I guess part of me feels like a failure or that I did something wrong. 

I was reminded that this was not the case.

My soon-to-be Mother-in-Law said to me, 'if you haven't proved that you are a wonderful mother through this then I don't know what will'.... or something along those lines. It kind of hit me that even though I don't feel like I've been doing a whole lot of 'mothering' the last 2 months I am doing what a mother should. 

I guess this all comes back to guilt. Of course, Todd isn't being punished for something... he's 6. What 6 year old deserves this? Obviously, something/someone is punishing me. What did I do to have this inflicted upon my child? Was I not appreciative of him enough. Did I not pay enough attention to him? What did I do to cause this to happen to him? Was I that selfish? It's so hard to get these thoughts out of my head. I know they are wrong, I know this isn't punishment... it's life. Bad things happen. I guess I just want someone to blame... and there isn't anyone. 

Yesterday turned out to be a day that everyone explained to me just how great of a Mom I was and all the things that I have done during these last two hard months have been the epitome of a good mother. Mother's Day could not have come at a better time. I needed the reminder. I was sinking into a hole of depression and feeling bad for Todd, feeling bad for myself, feeling bad for dragging Brian into being a part of this family. The day greatly exceeded my expectations. 

Thank you to everyone that reached out to me. I greatly appreciate it :)

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. 

Heartbroken

I went home today to do laundry and switch out some of our clothes. The friends watching our dogs are out of town this weekend so we brought them home. This was the first time they greeted me when I came home since the night before this all happened. Heartbreaking. It was bittersweet. I loved seeing them. I knew they were happy to be home, but it wasn't the same. I'm supposed to say hi to them, say hi to Brian, and then Todd is supposed to be there. 

His room is still clean from when I went through and put things away. I didn't want it to look like a storage space (it was beginning to with all the boxes and gifts we've received). Too still. Too quiet. Everything exactly where I put it. That's not how it's supposed to be. Everything is supposed to get messed up 5 minutes after I clean. You can see the animal hair from where they have been curling up on his bed. This is their spot when he isn't home. This is where they wait for him to come back. 

I decided I should finally fold the laundry from a few weeks ago that has been sitting in the basket since coming out of the dryer. I figured it would all be our clothes and maybe some towels and sheets. His clothes were in there. His sweaters, his jeans, his socks and underwear. How long has it been since he actually wore these? He's been in the hospital for 6 1/2 weeks.As I was folding them I noticed some of them were ones he had just grown out of and I thought, 'Oh yeah, I need to go through his clothes and donate.' I donate all of his old clothes. As soon as this thought crossed my mind, I was frozen. Even though it's something I do several times a year, I can't make myself go through and throw his stuff out right now. Even if it doesn't fit. It's too soon. It makes it feel like he's gone. No. I'll save that for another day. 

Before I headed back to the hospital I took the dogs for a walk. Again, this is the first time I've walked them around our neighborhood in over 6 weeks. It was already a gloomy, rainy day, this just sealed the deal. Everything just feels so lifeless. So still. There are always kids outside playing... at least there were before this happened. No kids. I was almost home when all of a sudden I look up and see Todd's friend standing in his doorway... I tried to look away at first, but he noticed me. As soon as he figured out who I was he shouted, 'Todd?!' ... it took everything in me not to hit the ground. I wanted to tell him he was home. I wanted to tell him I would send Todd out to play. All this child knows is that his friend is in the hospital... he has no idea. I told him that Todd was still in the hospital and that we'd let him know as soon as he was home. I quickly made it back to our place. I got in the door and lost it. I just want things to be normal again. I want them to go back to how they were. It was perfect. I want our family back. I want our routines back. I want my child back. 

Guilt

Of course I feel guilty. Guilty for all the times I said no. All the times I lost my temper. All the times I raised my voice. I was by no means a perfect mother. Guilty for not spending enough time with him. Guilty we didn't go more places. Guilty we didn't go to his beloved McDonald's one more time. People tell me I did my best. What if my best wasn't enough? I had all these plans for us. For once Brian got out of school. Once I went back to school and graduated. Once we had more money.
         Todd has been begging for a sibling, specifically a sister, for a while now. I even feel guilty for not doing that... although that's not very realistic at the moment, nor has it ever been.
         There are so many shoulda, coulda, wouldas....
I wasn't supposed to be at work that day. I had switched shifts with someone so we could go to my Mom's the weekend before. What if I had been off. What if I had picked him up from school like he always asked. He wanted to be carpool pickup randomly so many times, but I also knew he would miss going to O2B. What if he had been with me?
          All the times he asked me to sleep with him. All the times he asked me to cuddle with him after work and I was so exhausted I just wanted to shower and go to bed. There are so many things I would have done differently. He doesn't deserve this. No child does. We tried to avoid this. We had him followed by cardiologists from the time he was born. Did we do enough? When they saw him in August there were some abnormalities, but nothing that shouted 'I have a cardiomyopathy.' We even did a holter monitor for 24 hours. Should have I pushed more to look into the abnormalities?
          Every time I manage to get out and make it into a store I get these feelings. You know the typical child, looking at all the candy right there by the register. All the toys and fun things. He always wanted something. I could have given him that bag of cheetos. I could have given him that Hershey bar.
          We were still learning how to ride a bicycle. He hadn't quite gotten the hang of the 2 wheeler. I should have gone out with him more. I want him to have the childhood he deserves... the life he deserves. This isn't it. This is so much less. I want to make him smile again. Make him laugh again.
          It's hard to not feel guilty when you are responsible for someone. He adored me. He wanted me all day every day. Now he has that, but not for the right reasons. I should have given him more of me sooner.

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.

Necklace & Key Chain Fundraiser

To get your necklace or key chain: message Amye Morris on Facebook with your order!

https://www.facebook.com/amye.morris.52?fref=ts

Mail checks to:
Amye Morris
415 Sandleton Way
Evans, GA. 30809

Make checks payable to The Good Spur.

Please include $3 for shipping

$20 for necklace 
$15 for key chain