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.

We're supposed to be getting married...

2014 was supposed to be one of the best years yet. We are planning a wedding for December. I can't say that it isn't going to happen. But, things that were going to happen are most definitely going to be different than originally planned.

This wedding wasn't going to just be about Brian and I joining our lives... it was about the three of us, me, him, and Todd. We've already been our own little family for awhile... this was just going to seal the deal. Todd was going to be the ring bearer. There were certain aspects of the ceremony we were going to incorporate him into. Most of all... I wanted a mother & son dance with him. This is the part that breaks my heart.

We haven't had anything as far as planning that has demanded our attention right this second so luckily we haven't really had to make a decision yet. It's still pretty far away. A lot can change. I get a lot of questions about whether or not we're still doing it, how is this going to affect our plans etc. To be honest... I hadn't thought about it until people started asking.

That day is going to be so different for us now. We've now gone through a really hard life challenge. Not one most couples go through before marriage or even early into a marriage. It's definitely eye opening and I can't imagine going through this with anyone else by my side.

As of right now, the only thing that would stop us from having it is if Todd wouldn't be able to be there. Regardless of what condition he's in, as long as he's there... I'll be okay. We will find a way to make everything else work and fall into place.

Exhaustion

I thought I knew what tired was. I was wrong.

We've reverted back to the days where they say, 'Sleep when the baby sleeps.' This is so true right now. We have to get our sleep in when Todd does. For a few weeks getting 3 consecutive hours was an absolute blessing. I managed to get 7 hours total last night! Yes, it was broken up, but STILL!!

With a newborn, typically, you can find a way to soothe them. Whether it be feeding them, changing them, holding them etc. Since he storms, most of any of that would just make the storm worse. Except for changing him, he lets us know when he's wet, sometimes that will help if that's what the problem is. It's so hard to wake up in the middle of the night to one of the storms and not be able to do anything. There's nothing you can do, but you can't go back to sleep. How do you go back to sleep when your child looks and sounds like they are in pain? You have to ride it out.

It's been suggested to me, by multiple people, to go home, nap, rest. When I do go home, which is becoming more frequent, I can't stay there. I go in, do what I need to do and leave. It's uncomfortably quiet and still. Not to mention I already got one awful phone call to rush to a hospital... I don't want another. Not when I know I can be here. On one trip home I did attempt to sit down, watch tv, maybe even nap... I couldn't. I longed to come back. I wanted to be by his side. That's my comfort zone. This is where I am comfortable. He needs me and I need him. I know everyone is worried about caregiver fatigue and that when the time comes that I really am providing full care that I'll be exhausted, but honestly it's more exhausting forcing myself to do something that doesn't feel right.

I will admit that the first two weeks I did not take care of myself. Yes, guilty. I think I might have gone like 5 days without a shower and skipped several meals. But since then I've learned to cope better, I know I need to take care of myself and I have. Brian and I have started taking turns/shifts getting up with Todd, going out, having down time and it seems to be working well.

It's easier to rest when you have an end in sight. When you have a timeline. There is so much going on with him that there is no real way to put a timeline on it and that just makes it worse. It's hard to push through. We're trying to stay positive and trying to hang on to the good moments. Those are what really keep us going.

(working with PT/OT this morning)

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)

Oh, the Places You'll Go!

We've been reading to Todd since the beginning. Hearing is one of the few senses you retain even in the deepest of comas/sleeps. Our hope was that he would hang on to our voice, stay strong through it.

We brought several books from home, some we liked, some he liked. Many people bought us books as well. A favorite of mine is Dr. Seuss's 'Oh, the Places You'll Go.' I've loved this book since I was a child. You can tell by the way the book is falling apart. To be honest, I probably need to buy a new copy. I wanted to read this book to him probably more for myself than for him. It was a book I enjoyed, a book that made me feel better. I had no idea that this would happen.

"Wherever you fly, you'll be the best of the best. Wherever you go, you will top all the rest. Except when you don't. Because, sometimes, you won't. I'm sorry to say so but, sadly it's true that Bang-ups and Hang-ups can happen to you. You can get all hung up in a prickle-ly perch. And your gang will fly on. You'll be left in a Lurch. You'll come down from the Lurch with an unpleasant bump. And the chances are, then, that you'll be in a Slump. And when you're in a Slump, you're not in for much fun. Un-slumping yourself is not easily done."

I choked. Wow. How can this book relate to this situation so well? I wasn't sure if I could keep reading. I wasn't sure that I wanted to. This was a Bang-up. He is in a Lurch. Un-slumping himself is what he's been trying to do. I kept going...

"The Waiting Place... for people just waiting. Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting around for a Yes or a No or waiting for their hair to grow. Everyone is just waiting. Waiting for the fish to bite or waiting for wind to fly a kite or waiting around for Friday night or waiting, perhaps, for their Uncle Jake or a pot to boil, or a Better Break or a string of pearls, or a pair of pants or a wig with curls, or Another Chance. Everyone is just waiting."

Again. Really? We've been here 37 days... 5 weeks and 2 days. We've been waiting. Waiting for surgery. Waiting for him to wake up. Waiting for answers. Waiting to go home. Waiting to go to rehab. Waiting for progress. This book was published the year I was born... how could it relate so much? I cried. I tried to choke back the tears, I didn't want Todd to hear the tremble in my voice. I wanted him to hear confidence, love, and strength. These are the things he needs most right now. It took everything in me, but it was important that I finished this book. He needed to know that you can't give up. Even, when things are hard, even when they hurt, you have to keep fighting. 

I finished the book in tears. I wanted so badly for him to wake up. For him to read the book to me. This is the part where he is supposed to look at me and say, 'Mommy, it'll be okay.' 

We'll continue to read to him and all I can hope is that one day he will wake up and tell me he remembered it and that it helped. 

Dreams

I'm  usually not one to remember my dreams and even if I do... I don't remember them quite so vividly.

Since we've been in the hospital I've had multiple dreams about Todd. I would like to say that some of them have been good. In theory, yes, they are good dreams, but when you wake up to reality afterwards... there is nothing good about them.

The first two dreams I had were terrible. These must stem from my fear of having another child after all of this. In both dreams Todd had a brother, very close in age. I don't remember the specifics, but there was a child that was hospitalized (like Todd) after the same event and we were going through what we have been going through with Todd. The other child was not so lucky. He had the same condition, but he didn't make it. In the dream these events were happening at the same time. I was going through the loss of a child as well as not knowing if the other one would survive or not. I do have concerns about having another child. I think if Todd makes a full recovery I would be more okay with the idea, but depending on his recovery... and how much care he might need, I don't know that it would a) be plausible to have another child or b) be fair to either child. Yes, I know these thoughts are premature, but none the less still scary and uncomfortable.

The next few dreams I had were the 'good' ones. I say they were good because Todd made a full recovery in them. To wake up after a dream like that is absolute torture. We don't know much of a recovery Todd will make. All I want is for him to talk to me and laugh, smile, and play again. Todd can't communicate with us right now, he hasn't even opened his eyes after his surgery 9 days ago... so sometimes I think, maybe there is this subconscious connection you have with your child and that's his way of visiting me... communicating with me. You'll tell yourself anything to make yourself feel better.

Before the surgery I saw Todd come out. I saw his personality, his fire. That was reassuring. I haven't seen it since that morning when we dropped him off in the OR. He's been very sick since then with going into congestive heart failure and spiking fevers etc.

I wish I could take these dreams away. I don't enjoy either type. If anything, I'd rather have a dream that serves as a premonition... one that actually tells me how this turns out. I know that won't happen and even if it did... I wouldn't know that was what it was until it served to be true.

(Falling asleep anywhere in 2009)

Emotional Roller Coaster

It's called the 'ICU Roller Coaster.' I've prepared family members for this occurrence many times. 'It'll get worse before it gets better.' 'There will be good days and bad days.' 'Prepare yourself.' 

It's completely different when you're on this side. When it's your family member. When it's your child.

We've gone from days of being touch and go, not knowing if we'd make it through the night to laughing and smiling. 

How exhausting. How miserable. 

We've been here 5 weeks and 1 day. Todd's had multiple complications. 

1. Pulmonary edema, pleural effusions, pneumonia...
2. Cardiac arrest, bradycardia, congestive heart failure, increased BNP, fever
3. Lethargy, neurological deficits, unable to follow commands
4. Constipation, impaired gastric motility
5. Ascites, fluid overload, 3rd spacing
6. Impaired kidney function, inability to expel bladder, increased creatinine 

& many more...

I treasure the days when he used to smile. When he used to laugh. The days when he looked at me and I knew he recognized me. He hasn't woken up since his surgery 8 days ago. I keep reminding myself he's on a lot of medication, but he already had neurological deficits before that. 

I try to stay hopeful. I try to stay positive. I hang on to those moments. We were lucky enough to capture some on camera. It's hard to get excited when he's doing well. It's hard to keep from getting pessimistic. Then you beat yourself up when you slip up and have pessimistic thoughts. It's hard to not feel utterly defeated when we've had a quiet couple of days where we've been moving in the right direction and then all of a sudden something happens. Something unexpected. 

When people ask how he's doing it's hard to answer. He's not fine. This isn't normal for my child. He won't be fine till he's home, laughing, running around and playing. At the same time, you can't say that he isn't doing good. People jump to the worst conclusions. What do you say? The question itself sends you on a roller coaster. How do I REALLY feel about how he's doing? Am I being overly hopeful? Am I being optimistic or unrealistic? One thing goes right, but then four more go wrong. 

At one point we thought we'd be in rehab by now. Rehab isn't even on the table right now. Too many complications. 

There isn't much you can do for yourself at this point. You just have to finish the ride. 

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!

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

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.

Motivation

Fundraiser

Soon to come! A friend of a friend will be making these and charging $20 a piece as a fundraiser for Todd. We will get $15 per necklace/keychain and the other $5 goes towards supplies needed. Will keep everyone updated! 

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. 

Photo journey...

These are just a few of the pictures from the last 5 weeks. A lot of forward steps with some backward steps... but we'll get there.

Puppies!

I got to see my puppies today!

Hooper & Brody have been staying with friends for the last 5 weeks.

I miss my child...

How can you miss someone so much and them only be three feet away?

I didn’t realize just how much you could miss a personality, a being, a soul. I can lay in bed with him and still feel so far away. He isn’t awake. For whatever reason, be it the brain damage or the drugs. I keep trying to remind myself that he is on a lot of medication to keep him comfortable through the storms, but at the same time I worry he’s never going to wake up again. He’ll never be Todd again.

                Is he ever going to say ‘Mommy’ again? Is he ever going to run and jump on me the second I walk through the door? He was perfect. This perfect child. Yes, I found fault with him, he is a child after all. But, the best child. I beat myself up every day for not being nicer, not being more patient. There are so many things you would do differently if you knew. If only you knew what was ahead.

                I’ve gone through so many emotions: angry, sad, mad. It’s really hard to be angry and mad when you have no one to direct it to. This isn’t anyone’s fault. So where do you lay the blame? Where do you pass the torch? I know this isn’t my fault, but I have nowhere to displace the anger. I just want to hit something… or someone. I want to explode.

                I miss him so much. I just want my child back. 

Why... the eternal question

I find myself asking ‘Why?’ a lot. Why this child? Why my child? Why him? Why the child that put up with me during nursing school? Why the child that says, ‘I’ll just get over it’? He’s so resilient. This leads to a lot of unanswered questions. There isn’t an answer. There isn’t a reason. It just happened. Eventually I make it to another thought. If this was going to happen, if this had to happen… it happened in the best way possible.

                Brian got out of school in the early afternoon that day. He considered picking Todd up from O2B early, but Todd LOVES it there. He will get mad if we pick him up before 5. So, Brian decided to leave him there. Thank God. What if this had happened in the car? Or at home? We probably would have just thought he was asleep. We never would have known.

                The staff at O2B know CPR. Thank God. From what I’ve learned over the course of this, not every day care/after school care requires that the staff know how to perform this. Quick acting on their part made all the difference. Without the staff knowing CPR, Todd would not have made it long enough for everyone involved to do what they did. They gave Todd a chance. They gave him another chance to live.

                I don’t know all of the details of the paramedics/EMTs story. I have a pretty good idea of what probably happened. I’m a nurse in Trauma ICU. Our patients are typically brought to us stable or with an entire team of people including doctors, nurses, and respiratory therapists attempting to make them stable. They don’t have that luxury outside of the hospital. Our environment is very controlled. Theirs changes based on where this particular call is. I know they got an airway on him, I know they attempted to revive him, and I know they transported him to the hospital. It takes a very special person to be able to do that. I can’t imagine. They were able to get him to North Florida Regional Medical Center (NFRMC) which, conveniently, was located across the parking lot.

                There was a special group of people at NFRMC that day. I was able to personally see what they were doing for my child. Everyone from the doctors to the nurses to the chaplain to the crisis counselor did their job beautifully. This is where we finally got a blood pressure and heart rate/rhythm back. Without the actions of these people and everyone before this would not have been possible. My world was turned upside down. They took care of me and Brian  as well as they did Todd. I was begging to see him. All I wanted was to lay my eyes on him. I know they were worried I would throw myself over him and get in their way. With the support of one of the staff (I won’t name this person since they helped me barge into the room uninvited), I maneuvered my way in and laid eyes on my child for the first time. I’ve seen many people in that position, in a code, looking so lifeless. I had tried to prepare myself for what I was going to see. I knew he wouldn’t look like ‘Todd’, but I realized that as much as I tried to prepare myself, I was expecting to see a different person lying on that table. A different child. They must have made a mistake. But, there he was. We were taken to another room to wait to speak to the doctor that had been working on our child. They were very straight forward with us; already had initiated transfer to Children’s at Shands. We were lucky enough that one of the ER doctors that was off that day happened to be there and rode with Todd and ShandsCair to Shands. ShandsCair took the time to introduce themselves to me and explain what they were doing etc. Again, another set of amazing people. Todd got a multi police car escort to Shands since it was 5 o’clock traffic. He is going to be so mad that he missed it.

                Once we made it to Shands we were taken to a separate private room from the rest of the pediatric ED. A social worker came in and spoke to us and assured us the doctors would be right in. The two doctors that came to speak to us were some of the best I have ever met. They were calm, collected, and most of all reassuring and straight forward. Todd was very sick. He was very unstable. We eventually made it up to the Pediatric ICU where there was a long wait before we could see him. They were still trying to stabilize him at this point. It was very touch and go. The nurses were very meticulous with his care. We’ve slept at the hospital every night since that first night, although, we didn’t do a lot of sleeping that night. Luckily for me, Shands was already my home away from home. Maybe not this unit, but everything was so familiar. This made everything so much easier.

                In the days to come our world continued to turn upside down, inside out, and completely change. Everyone around us came together and supported us. I have never felt so loved and cared for in my entire life. I could never express my gratitude to everyone. I don’t even know some of the people who have attempted to help us. All I can say is thank you… from the bottom of my heart.