Exhaustion

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

Maybe I just need to process and decompress.

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

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

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

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

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

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

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

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

Embracing the Situation

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

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

I'm going to 'Embrace the Situation'. 

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

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

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

This is how I'm embracing the situation.

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

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

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

I have managed to get myself excited for this.

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

Stages of Grief

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

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

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

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

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

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

(these were yesterday before the G tube surgery)

Mother's Day

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

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

I was reminded that this was not the case.

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

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

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

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

Situations

No situation is ever easy. If something can be called a 'situation' that pretty much means it's complicated. 

Todd currently can't walk. Can't move anything purposefully. We'll be going to rehab, but there isn't any way to gauge how much he'll get back or how soon/fast. 

We currently live in a townhouse... Todd's room, of course, is on the 2nd floor. Right now, we can carry him up and down the stairs... not the safest idea in the world. Not to mention that he will grow, he will gain weight... at what point is this no longer physically possible? In the grand scheme of things... we are going to have to move. On top of everything going on right now with him medically, we have to deal with this. It's not fair, it sucks. We LOVE where we live. We love the school district. We love the friends Todd has in the neighborhood. For the time being we can convert our dining room into a bedroom. The problem with this is that I know I won't be sleeping in my bed if this is the case. He's too far away. I'll either be sleeping in the bed with him or sleeping in the living room on the couch. This does not seem very ideal either. Plus, we'd be eating off our coffee table in the living room. 

Frustrations. 

We have to give a 60 day notice to our complex. Technically our lease is up on July 20th.... that means we have to give notice in the next 2 weeks... but we don't have time to look for anything. Not to mention, how stressful is moving? VERY. We JUST DID IT. We moved this last time in the hopes that we wouldn't move again until we moved away from this city. Why can't things just be simple? Simple answers. Simple solutions. Aren't we dealing with enough?

Our next 'situation' is insurance. I have amazing insurance... through my job... that I'm not currently working at. I have to go back at some point to ensure I can keep it. We applied for Medicaid, but as of right now, he only qualifies to be on it so long as he is 'in a facility.' So the second we bring him home... no more Medicaid. When we bring him home I need to be there to take care of him, not at work. Home care, equipment, supplies... this all adds up. Simplicity if a foreign term to me. Oh, and just let me tell you about SSI. If I go back to work I make, in their terms, 'WELL above the poverty line,' on my sole income. I need to go back to work to keep my insurance like I said. If I don't go back to work, we qualify, but we can't live off that amount of money. The woman I actually met with was actually very nice and did everything she could for me. However, Mr. Security Guard almost had a come apart when I walked in with a water bottle. Excuse me, when did it become a federal offense to drink water? He could have politely showed me the sign that said no food or drinks instead of pretty much verbally assaulting me. 

Can we just catch a break? A little one....?

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. 

Breaking the Habit

Apparently most (all) of my blog posts make everyone cry. Well, maybe this one will make you cry, but hopefully for happy tears rather than sad. 

Todd smiled. He smiled and he laughed. We weren't sure we would ever see that again. He did it 2 1/2 weeks after the initial event, but hadn't done it after his surgery 2 1/2 weeks ago. We were so worried that we had a major set back. 

He still looked pretty groggy and tired all day. Then, all of a sudden, (I think I burped) Brian called me a piggy in front of him and he lost it. He cracked up. Big, giant, grin & then come the shoulders.... bouncing up and down. He was not only smiling, but LAUGHING! After that it was all bright eyes, looking around, re-exploring. My child is back! 

I was getting so tired of the sad tears and the heartbreak after heartbreak. I needed this. We needed this. All of us. We needed to know there was a light at the end of the tunnel. Such a wonderful ending to my weekend and beginning to my week. 

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. 

Future children

I know this thought is completely premature, but it's something I can't help but think about when people ask if Todd is my only child. Will we have other children? Do we want other children?

Given Todd's current state... he is going to need a lot of time devoted to him. Is it fair to take time away from him? Would it even be feasible? After watching him suffer, are we sure we want to bring another child into the world?

On the other hand, as I've been talking to people in support groups... it may be helpful. Interacting with another growing child could possibly be beneficial to him. He always did want a sister. He could relearn things with this other child and they actually might have a relationship.

Would it be fair to said other child? To be born into a world where so much attention and care is focused on your older brother. If we did have another child, they deserve our attention. They deserve just as much focus. But with these circumstances... how do you balance that?

I know a lot of other families already had multiple children when this happened to their child. They didn't really get a choice. And that's okay. You do what you have to do. You split your time the best you can. You have no choice. I have a choice. We have a choice.

Would it be a tease to have another child, finally give Todd the sibling he begged for, and him not be able to fully interact? I know he is aware enough to understand that he had a sibling. He may not be able to communicate with us, but he understands his surroundings.

This decision obviously isn't going to be made until several years from now... but it's a recurring thought. Especially with the dreams I was having those first couple of weeks. I'm 99% sure I know where Todd's heart condition came from (which is not my genes)... but what if that 1% is me. What if I do carry some god awful gene that helped cause this? I don't want to do that to another child.

(this is Todd with one of his best friend's baby brother, he'd make such a good big brother)