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.

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.

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.

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. 

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.