Surgery

Todd had his tonsils taken out today. Something I have waited YEARS for. I think that if this were to happen before this year I would not have had near as much anxiety, but with everything he's gone through any type of surgery and any type of sedation scares me. But luckily he came out quite stable and quite comfortable. So far we've had no pain issues... Even with all the coughing from the respiratory infection. This kid has been such a trooper. He is honestly the strongest person I know... And not that he has much of a choice but he has been so brave through all of this. I've often struggled with how could I allow my child to live like this. I would never want to. I thought that I pushed so hard to keep him here with me for such selfish reasons and that in all reality I was just torturing him and condemning him to a painful unhappy life. I would think that I'd be a miserable unhappy crabby person if I lived in the type of state he is in... But this amazing child is far from that. He is the happiest person I know. So easy to smile. So easy to laugh. Recovers from a fit in half a second. Only cries when he actually is uncomfortable or needs something. He has always been the most loving kind and generous child.... And that personality is still here with us today. Again I feared I made the wrong decision to push this tonsil surgery. I know the risks are minimal but we've been through so much it's hard not to think about worst case scenarios. What if I pushed this so hard and he didn't make it for what ever reason? I knew this surgery was what was best for him. The doctors agreed with me, but I don't think they would have agreed with me if I hadn't pushed for a sleep study and actually video taped him sleeping myself. There was a moment today... When they let me go back to the OR room with him, all dressed up like a smurf... They let me walk him in. Hold him on the OR table and even hold his hand and be right next to him until he fell asleep. Before hand, like I said, I had all these worst case scenarios and what if he didn't make it, what was my last moment with him going to be like. Ever since the day he arrested, I think about that morning, that quick hug goodbye before I ran off to work... He was still half asleep. That could have been my last moment... And I had no clue. Even though I know his body went limp from the anesthetic gas it still almost felt like the life draining from him. I didn't realize that I would have felt and reacted the way that I did. I was holding his hand and I felt him let go and his hand get heavier in mine. (With my own patients this is generally when I let out the sigh of relief.) I don't know that there is anyone on the planet that could love me the way this child does. Nothing against Brian or my parents, but his adoration and unconditional love and trust for me has surpassed anything I ever could have imagined. Even though he can't talk. Can't nod his head. Can't blink yes or no. We communicate on an entirely different level. I know he feeds off me and I most certainly feed off him. Before the injury if I was ever upset about something or stressed out about school or what ever he would come up to me and hold ME and tell me it would all be alright and that he loved me. He has the most precious soul I have ever been privileged to meet and I am so thankful to be able to call myself his Mommy..... I must have done something right.

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. 

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)

The Lion Hat

          I guess at some point I should explain the 'Heart of a Lion' & 'Lion Head/Hat/Heart' terms... I guess some people know already. It wasn't even anything I did, but it grew, and it spread like wildfire... and the definition of lion heart? Oh, too good to be true.
          Todd has a hat with matching gloves that he wears when it's cold.... and for kickball games in the middle of March. I still, to this day, do not remember who bought it for him, it certainly wasn't me. I thought it looked ridiculous at first, but then it grew on me. Todd loved wearing it so what could I say? He did look rather adorable. He would come home from school and say someone told him his hat looked ridiculous... I asked him, 'Well what do you think?' He would say, 'I don't care, I'm going to wear it again.' That's my stinker. 
          The hat became quite popular with the staff at O2B. It was like Todd's recognizing feature. There are so many kids, but he's the one with the Lion Hat! All kids get nicknames whether it be from parents, other kids, or counselors... this one came from them. Every day we would pick him up they would say something about that hat. Lion hat turned into Lion head pretty quick. Todd loved it. Todd loves nicknames. He's given me more than I can remember. 
           Todd tried out for and made the JV Purple Hornets kickball team. When they were first having games and practices it was pretty cold so he would wear the hat for its meant purpose. Then they started asking him to wear it to games. He became not only one of their players, but almost a mascot too. These kickball games were quite the event. I first one I was able to make it to was the Friday before all of this happened. They had referees and even a PA system with background music and announcements. When Todd came up to bat/kick they said, 'Next up, Todd 'Lion Head/Hat' Miller!' It was amazing. I felt like I was watching a legitimate adult sporting event. Might I also mention that it was extremely hot that day and in order for Todd to not get too hot he chose to wear nothing under his jersey so he could wear the hat. This kid. He amazes me. 
          The following Tuesday, March 18, is when he went into cardiac arrest. He was at O2B, outside, on the kick ball field. They were getting ready to practice. From what I understand he had the hat on and was ready to go. Later, the staff told me they were all fighting over who got to hold onto the hat and bring it to us since it didn't make it in the ambulance. This little hat, this piece of cloth.... it was so important to so many people. At this point Lion Head/Hat became Lion Heart.
          The next week the staff was busy at work doing stuff for Todd. They made this enormous poster for him with tons of signatures from the kids and staff and they made Lion Heart ribbons to wear. The name continued. O2B also decided to use one of their events as a fund raiser for Todd as well. The term was just fitting. They had stations to color a heart for Todd. They had posters saying Heart of a Lion on them. It was amazing. I knew my child was loved. I knew how much my family loved him, his friends... heck I knew how much I loved him, but I had no idea just how much these people loved him. 
          We've made several room changes since being in the Pediatric ICU. At one point, we were in the Lion Room. I felt, after all of this, it was very fitting. 
          The term 'Heart of a Lion' is an idiom referring to someone who is courageous in the face of adversity. Someone strong a brave despite how hard the situation might be. It means you are passionate about life. That, Todd was. He is all of these things. Especially now, now that he is laying in a hospital bed fighting for his life. 
          This hat deserves a shrine. Once he's up and moving I'm sure I won't be able to get it off of him!