IamA father of a quadriplegic 9 year old boy that cannot communicate verbally, is ventilator dependent, and eats only goats milk through a g-tube. AmA

Having a child with issues so large is hard for me to imagine. I feel like I wouldn't want him/her. How bad of a person does that make me?

Maybe I don't know any better because I haven't yet had kids. I dunno.

No I completely understand what you're saying. I felt exactly the same before I had him. But you realize how much stronger you are emotionally after you successfully go through that transition. Some people wouldn't be able to handle it and I would completely understand. I've had my moments, believe me. Doesn't make you a bad person, it makes you normal.

*edit: left out some words

Yeah. I was going back and forth thinking what a natural reaction might be. Would it be normal to love the child regardless, or normal to not want something like that?

But yeah, I guess you're right. I guess it's one of those things you don't understand until you experience it. Hopefully I won't have to. Sorry if that seems wrong to say.

I applaud you on your incredible strength to handle it. Best of luck to you and your kid. What's his name? That's always a nice question.

I wouldn't wish this situation on anyone. I'd be lying if I said that I wish I never had to experience it but you just play the hand your dealt. His name is Joey. :)

Well let Joey know he's awesome, and that there's a whole bunch of people he doesn't know who think he's awesome too.

And of course, you keep being awesome. Best wishes to you and the new lady. I hope she knows how much awesome she's surrounding herself with.

Haha thanks! I'll tell him. My fiancee now is my rock. She's there for all my stresses and heartaches as well as the good times. She is absolutely amazing and I don't think I'd have cine as far as I have without her.

I apologize if this is an insensitive question, but one of my cousins was born with Downs Syndrome and its something I have always wanted to ask my aunt, but I know it would open a serious can of worms and probably get me ostracized from my family.

Do you have any plan in place for when you and his mother pass away? With his condition, is he expected to outlive you two, in the same way my cousin will likely live past her parents?

Very good question. We've never received any kind of prognosis for life expectancy. And to be honest, I've thought about what would happen to him if everyone who loved him would pass away but I haven't put enough thought into it. There isn't any set plan and that is definitely something I need to look more into to. But it's very hard for me to think about that. Only bad images ever go though my head. I imagine him sitting in a group home in a corner somewhere being ignored. This is probably an unrealistic expectation but I can't help that thought crossing my mind every time and it deters me from actually thinking more into it...

As a healthcare worker who has seen bad things happen: sit down with anyone important to his care and hash this out now. It's hard, and it sucks, but figuring out who would care for your child now, if something catastrophic would happen to his main caregivers, is something you need to do.

You do not want him to end up in the hands of the state and/or social workers, plan something out with your family who actually cares for him personally ASAP.

I will take your advice. It'll be hard and I'm not sure how I'll bring it up but you're right. This is something that I need to stop procrastinating about.

Cherish every moment you have with him. My brother who was similarly incapacitated passed away this last Sunday and I would give anything just to give him one last hug.

My condolences. I feel for you. I really do. I'll give Joey an extra big hug for you.

Thanks, I appreciate it. I can tell there's a lot of love there, and in the long run, that's all you need. :)

That's exactly how I feel. And I can tell your brother felt very loved. You're an amazing person to go through that and still have enough wits about you too be discussing it. I envy you.

Hey sorry for this but fuck you, I was on the brink of tears reading this AMA and got to your comment. It pushed me over.

OP I admire you so much you would not believe. Your life is his essentially? Any spare time you thought you had was gone? I'm not religious so I wont pray for you but you have my admiration.
Let your little boy grow up the best he can. Take him places outdoors if you can and revel in the beauty of the natural world around you, and your family. Merry Christmas Joey & family.

o(╥﹏╥)o

I'm not religious at all either. While I do appreciate the gesture of people praying for us, I don't expect it. Just to know that my boy is actually making a difference in the world is enough. Just by existing and me telling his story, he has affected you. That alone is enough to make his life worthwhile. Thank you and Happy Holidays to you as well.

Do you and his mom share custody or how does that work to move him and all the equipment, appointments, etc. back and forth?

I now have him every other weekend and split holidays asking with the other kids. Since I drive a Charger, I have to borrow my brothers van to pick them all up. I have to pack all of his major equipment back and forth each time. I'm working with Apria to get some of his equipment permanently at my house. But until then for just him I pack a ventilator, ventilator stand, oxygen tanks, pulse oximeter (sp?), suction machine, breathing treatment machine and nebulizer, a luggage case with emergency supplies including an ambu bag, extra trachs, the medicine (the name escapes me at the moment) administered to stop a seizure in its tracks; also another bag with his food for the weekend, all of his meds, and I know there's some other stuff I'm forgetting.

What kinds of medication does he take? Anti-seizure, obviously, but anything else?

Has he had emergency hospitalizations before? What for?

Too many to remember off hand. I'm at work right now but I'll come up with a list tonight after I'm off.

Emergency hospitalization? The only major one was when he had his seizure. All of the other hospitalizations have been due to scheduled appointments/surgeries. As odd as it may sound, he is usually the healthiest of all my kids.

Nah, don't bother reporting the list back---that's OK. I was just wondering what types of meds he is on.

Great that he's overall a healthy little guy.

Oh, another questions---what are his interests? What does he like to do?

Well he was into Cars pretty big for awhile. He likes VeggieTales although I'm not religious whatsoever the cartoon is cute for kids. One of his favorite movies is the old animated Charlotte's Web. I always found that kind of interesting as it's a movie about promoting differences and I think maybe that is why he likes it so much. I've got him the Star Wars The Force Trainer and he is surprisingly good at it. Better than me. He likes being read to, doesn't really matter what. I think he just enjoys the closeness and attention. He loves hearing his brothers and sisters getting in trouble. He usually starts laughing when he can hear them getting yelled at lol.

The Despicable Me movies are a couple others he might like if he hasn't seen them already.

Yeah he loves those too. We saw Mars Needs Moms in the theater and he loved that. I don't think he'd ever seen a screen that big before.

That's an awful lot of stuff for just him...

It is. And I'm sure I left some stuff out. That's why I'm trying to get his medical supplies provider to get me some of the stuff for my house permanently.

Seizure med is probably Diastat if it is inserted rectally. God Bless you and your family.

Yes, that's the name of it! Thank you.

Not a problem! I teach students with autism and unfortunately have a moderate amount of experience with seizures (not my own). I have never had to administer Diastat, thankfully, but have been trained on it.

That was the first and only seizure Joey has ever had, thankfully. I've never had to administer Diastat myself and I hope I never have to.

I really do not know what having a kid is like, and maybe this is just my selfish 21-year old brain working, but I feel like I would have taken him off life support. Is there any chance at the kid having a relatively normal life?

I can relate to how you feel. Honestly after his seizure, the doctors had ran tests but hasn't received the results yet but had told us that he was brain dead. We had discussed the possibilities and we had actually agreed to pull the plug. If he was truly brain dead we didn't want him to be trapped in this shell of a body. We couldn't stand the thought of hoping everyday he would snap out it knowing he never actually would. I remember this vividly. I was a loan officer at the time. I was by myself in the office. I was discussing all of this with my now ex-wife on the phone sobbing through every word. I couldn't believe I had to make this decision. I've heard about stuff like this before but never thought I'd have to go through it. We made the decision to pull the plug, however, I was about an hour and a half away and wanted to say my goodbyes. That was the longest yet shortest drive of my life. So many thoughts and emotions running through my head. When I walked in the room my ex-wife was holding him. His eyes had gone cross from the seizure and his arms were curled up so tight to his chest. It was a horrible sight as a father to see your child like this. I broke down in the room and just cried and hugged and kissed him and told him how sorry I was and that I loved him... I'm tearing up now remembering these thoughts again... But we were ready and when we were going to tell the doctor they said that the test results had come back and they may be wrong that he was showing brain activity and he had a chance to at least somewhat recover. I latched on to that and never let go.

Im at a loss for words, thank you for your response. You are a stronger man than I, that is for certain. Now you mentioned this happened a little while ago, how is your boy doing now?

You'd be surprised what you can go through when you don't have a choice. I'm not amazing or anything close to the sorts. I have a lot of patience and understanding and empathy. That's all you really need and even if you don't have that, once you're in a position like this you develop it.

He's doing well. His hips have came out of socket, again, and were deciding what to do about that exactly. But other than that he's doing very well. Thanks for asking!

Parent of a cancer survivor with many health issues here. I am so glad you wrote this. So many times, people have looked at me and said "I don't know how you do it" I always say "The alternative is worse".

I send you strength and empathy, from me to you, in the way only another parent in a similar situation can.
I will pray for your son and for his parents.

Yes. That statement 100000 times. As hard as it can be at times the alternative is much worse. I like that. Don't mind if I use it myself do you? ;)

This is exactly what I told people when my dad became a quadriplegic. They would always ask how we do it. I always answer with, "We didn't get to decide, we just have to."

Just do it mentality. That's how I feel about it too. No other way to describe it.

If he was truly brain dead we didn't want him to be trapped in this shell of a body.

Wouldn't he be more trapped if he wasn't brain dead? Brain dead people aren't aware of anything, as far as we know.

Well I suppose you're right. I guess if he wasn't there but his body was still alive it would just be a continual false hope and tremendous letdown. That I really don't think I could handle everyday.

But isn't he already trapped in a shell of a body, though, with no way to communicate if he could?

Well he can communicate albeit minimally through other means.

I had the same question. I know parents hold on to their offspring for various psychological and genetic reasons but ... I'm pretty sure this boy is not enjoying his life per se. The parents may be spending a lot of time to maintain a life that will never flourish, when in fact they could be spending that time/energy/$ on other channels - whether it's having a new kid or adopting, travelling, whatever may float your respective boats.

That's understandable. But what makes one man happy makes another sad. I actually enjoy spending my time with him. I don't see it as maintaining something that I reap no benefits from. The smile on his face and knowing that I am one of the very few people that can put it there is with a trip to the Bahamas for me. Maybe not for everyone, but for me. And I'm not lacking in other areas of my life because of him either. I work full time at a decent job that I actually have fun at making pretty good money, I'm going to school full time, I enjoy my life. And Joey is a part of that life I enjoy. It would actually be LESS enjoyable if he weren't in it.

I think that for a lot of parents they would give up all the money in the world just to see that smile on their childs face. I know that I live to see that sweet smile from my boy every day. I almost didn't make it through his birth and I'm thankful for all the time I get with him. I live for him. If he were to ever be in this position I would have done the same as you. You never know how much you can truly love another person until you have kids. It's different than the love I have for my family/friends. His happiness can make even the shittiest days better.

You're right. Only a patent can fully empathize. Non parents can sympathize but until you've felt the love you have for your own offspring you'll never actually really understand. That sounds harsh reading it and I'm not trying to be rude at all but it's the truth.

I read a little further and it seems he has, when combined with his current woman, 6 children. So I could see how the massive amount of time and energy (and money, while not as important) required for the unfortunate child could potentially taking away from his other children. Im assuming like a crazy person right now, so OP please do not take offense to what i'm saying.

So, I kind of understand where you two are coming from, but there's nothing that says this kid isn't enjoying life. Look at the response here.

Also, with medical research being what it is, there is a chance the boy could enjoy more of his life later down the road.

The parents may be spending a lot of time to maintain a life that will never flourish, when in fact they could be spending that time/energy/$ on other channels - whether it's having a new kid or adopting, travelling, whatever may float your respective boats.

SO, this does strike me as really insensitive. I know you're being honest and questioning, but it sounds like you're saying, "Why don't you throw that useless kid away and get a new one...or travel or something."

Of course, I'm not the OP and am just some other poster sticking my nose in...

No, I want people to "stick their nose in". I want to answer the hard questions. I want to spread the knowledge I have.

I've looked a lot into bci to see how close are to interpreting brain wave activity to speech. We're on the right path for this technology but we're a ways out. Probably post Joey's lifetime unfortunately. I could be wrong though and Joey would be a very good candidate for trying technology like this out. I would die for the chance to hold a conversation with him.

What if that conversation led to him telling you to end his life? I would have to think that would be the most feared response to a conversation. Not to mention the fact that he has been trapped for the last x years in a non-functioning body, that very well may be his response.

Have you ever wished that the scan came back showing no brain activity? So the decision that was made earlier in the day would have went through? I'm sure it was the hardest decision ever, however how much of that decision was because of the glimmer of hope vs. if you were in his shoes, you would want to live?

You know I've thought a lot about that. What things would be like if the test results came back completely bad. I could think myself to death over what ifs but I'm glad the decision was made the way it was. However, I had said goodbyes already. I hade come to terms with it. I was emotionally distraught still the time but I knew what I had to do. Things would be... different. I wouldn't say easier because emotionally I'd be torn up literally every time I got to thinking about him too much. I think that would have been worse.

As for him asking me to kill him, I honestly don't think he would. I may be assuming too much but I think at this point and with his condition he wouldn't be aware of what suicide or death actually meant. I can definitely see the possibility of him being depressed about his situation but putting myself in his shoes knowing that I finally have a way to accurately communicate with someone after so many years would make me feel like my life had started over again. He's happy and laughing his strange laugh and smiling all the time so I really don't think he's depressed. I think he views his life and what things make him happy different than the rest of us.

I have to thank you for bringing a new side to looking at this topic. I have never considered the fact that, because a person is brain damaged, they may thoroughly enjoy life in a different way than I ever could. I mean, I love blowjobs. Maybe Joey getting to see outside is orgasmic to his brain. Pure elation from something most of us deem insignificant and mundane. I think I could live that life if that were the case.

Exactly. I couldn't explain it better myself. Lol

Hah, none taken. We're very good at managing time amongst kids. It's all about group activities.

How do your other kids deal with this? Do they take a certain pride in the fact that their brother is disabled, I mean if my brother were disabled he would for sure be my hero. And also, how much to they help out with taking care of him?

The 10 year old step sister and the 5 year old step sister are very new to this type of situation and are a little timid about him which is very understandable. But they've shown him nothing but love and asked questions out of curiosity as kids do. Also the fact that they are only around him every other weekend doesn't help to quicken the pace of them getting used to him but they are very sweet to him.

The seven year old sister is very open about his condition to everyone and doesn't shy away from questions from other kids about him. She treats him like she would a puppy. Sounds kind of demeaning but it's the best way I can think of to describe it. She's always kissing him and rubbing his legs or head and telling him how much she loves him. It's very cute actually.

The 5 year old brother is protective of him. He's always making sure that his big brother is always included in everything. We're going to the park? He reminds me to make sure I pack Joey's wheelchair. We're playing a board game? He wants to make sure Joey gets his turn. We're getting McDonald's? He always wants Joey to get chicken nuggets like him (even though Joey can't eat chicken nuggets lol). If Joey's alarms go off because of a low or high pressure in his ventilator tubing, he's always quick to run in and see what's going on.

The 2 year old sister adores him. She always wants to lay with him to watch movies and play games with him. She always wants to help suction him when he needs it.

That's absolutely adorable. This cynic's heart grew three sizes today.

I'll post some pics up them later tonight. :)

<3

Kids, man.

Ikr?

sounds like you got a group of super kids and I'm so glad that all of your kids are helping to make the next generation a little more accepting of differences.

I've taught them from the beginning of their lives to be open and understanding about stuff like this. They don't see him as their disabled brother. To them he's just their big brother.

I have a brother with complex needs. We are a little more than two years apart and are now both adults (he is 22 and I am 25). In short, he has severe cerebral palsy, is non-verbal (uses his eyebrows and mouth opening and closing to communicate), has multiple seizures a day, feeding tube without being able to orally intake anything orally, no purposeful movement. That being said, ever since being a little girl, I have absolutely been in love with him. I am very protective and am a huge advocate for him. I don't shy away from the tough questions and will ask my parents anything I need. Now that my parents are aging and I am married and have started my career,I have asked my parents to make me his legal guardian should anything happen to them. This is not a decision that I took lightly, but I have such a deep love for him that I want what is best for him. He also brings so much joy in my life and in the life of others.

That is amazing. Its a lot of responsibility to take on. Very, very admirable. I wouldn't wish the responsibility to fall on anyone's shoulders but mine even though I know a time will come where that won't be the case anymore. I just hope that someone that cares about him after I'm gone to be able to take him under their wing. I don't like thinking about having to push this onto someone else, but it will happen. I hope someone like you is around then for him.

What are your thoughts on euthanasia given your circumstance?

In his current condition, absolutely not. Even if ask funding got cut off for medical coverage I would find a way to make it work. If that would result in doing things in a less than legal manner I wouldn't be above it to keep my son alive if I knew he had a chance of at least a happy life. I'm completely against the idea of euthanasia unless it is requested from a person of sound mind that actually has a legitimate reason for it. If my son were to request it of me, I'd have to have a serious conversation with him and I'd would consider it. I'd show him that there is a reason for him to live and how so many people loved and depended on him for his strength. This is all hypothetical though and reality may differ.

Thank you for the honest reply.

You're very welcome. Thanks for the honest question.

I'm completely against the idea of euthanasia unless it is requested from a person of sound mind that actually has a legitimate reason for it

Don't forget the "from an adult of sound mind..." part...

Ah yeah. Sorry. That's what I mean but I was assuming it was implied. But you know what they say about assuming. Lol

What is an average day like for you and him?

Well, we wake up, eat breakfast, do some exercises, watch some TV, play some games, his therapists or in-home teachers will show up at different times throughout the days each week. He has a pretty normal routine except that there are just extra steps and different ways of accomplishing those tasks.

Why goats milk?

On top of everything else, he was allergic to corn, soy, dairy, just about everything. I think he's staying to grow out of that now though. He's been eating stage 2 baby foods mixed with his goats milk for about the past year now and hasn't had any issues.

For whatever reason, goats milk was the only thing he could keep down. We tried just about everything else, literally.

I was diagnosed with a corn allergy when I was preschool-ish age, so I know how rough that can be. Pretty much everything is sweetened with corn syrup, so all that stuff is out of the question. Thankfully thats the only real allergy I've got, but I hardly ever see or hear about anybody else with it. If nothing else I can appreciate the difficulty in finding foods and drinks that are ok for him to have.

Yeah it's tough. He can tolerate very small amounts of stuff by mouth. He loves cotton candy. But we can only give him so much. But that's alright cause he likes to share with his dad. ;)

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Well, the pregnancy was perfectly normal. We didn't know anything was wrong until he was born and he wasn't breathing regularly and his apgar score was 0 and then 1. We later found out he had congenital CMV (cytomegalovirus) which caused a lot of problems from birth. One of which was his phrenic nerve was paralyzed. He was put on a trach and ventilator after about a month of trying other options. Amongst a host of other issues, he suffered a seizure when he was about 1 1/2 that lasted 12 hours. He had to be put into a chemically induced coma to stop the seizure. This caused massive brain damage which is why he is a quadriplegic and has low muscle tone and cannot communicate now.

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I'll be honest, he was my first child and I was scared shitless. I kind of collapsed inwards and was very, very depressed. I thought I was a complete failure. I was stuck in this horrible mental spot for awhile. I loved him more than life itself but I felt like I was being punished. Until his first surgery. At that point I realized that it wasn't about me anymore. I could mope around and feel sorry for myself all I wanted but that wouldn't do a single damn thing for my son. I needed to get involved and help him as much as I could. So I gave myself a boot to the ass and started being more of a father for him. He came a LONG way after his 16 month long stay at Riley's Hospital. He was very much a normal child except for the fact he was on a ventilator and even that was supposed to be temporary. But seizures is one issue related to congenital CMV. I wrote a poem for him when he was first born. From my heart. And that actually helped me cope a lot. After his seizure I added on to that poem because the doctors told us that we needed to make a decision whether or not to keep him on life support because they assumed he was going to be brain dead. That was another all-time low.

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Hah, well it obviously survived, 3 more children later. Will I have any more children? Not with her. Came home from a deployment in Afghanistan to find out she was pregnant with her ex-husband's baby. However, the woman I am with now is a much better person than she was. I would very willingly have more children with her, which we plan on doing. She has two of her own so together we have 6. She is very supportive. I seriously would lose my mind due to stress if it weren't for her. She is learning a lot about Joey's care and her help is invaluable.

Edit: spelling

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lol yes, diaper changing gets old, but I'm really really good at it by now.

My son is 1 1/2, that post terrifies the shit out of me.

Don't let worries or fears of what could happen hold you back. It's completely normal to feel that way. It's terrifying but chances of it happening is very unlikely. There was about a 1% chance of the way things played out for us would happen. So don't worry so much about things not under your control. I'll provide source for this info later tonight if you wish.

I'm really hoping not, but has he been subjected to any form of bullying/judgement? How do you deal with protecting your child in that scenario? How does this affect his social abilities & relationships with other children?

I apologize for the large content of questions but I respect you so much for refusing to yield to adversity for the sake of your son.

Well he is pretty sheltered. Doesn't get out in public much but when he does we get a lot of stares and questions. The questions I actually like. The stares can get annoying but I take it with a grain of salt because I know it's an unusual site to see a little boy in a big red wheelchair with a ventilator and oxygen tank hanging on the back and a Cars license plate hanging on the front. I have never had anyone actually say anything negative to us in public before. I'm somewhat passive aggressive so I would be polite to any negative feedback at first but sarcastic. Keep it up and I'd have to drag you behind the wheelchair where Joey couldn't see you getting your ass beat lol.

Other children generally avoid him. But I absolutely, honestly love the ones that come up and ask questions. I'll introduce them to him and explain what everything they ask is.

*edit: added more info

I hate when people stare. My SO's mom has MS and is paralyzed from the neck down. In the last yr they had to put a trach and feeding tube in. When we go places (even hospitals) with her and people see her in her chair and with the medical equipment on it they always stare. I've been with my SO 6yrs but it's only been for about the last 2yrs that she's been able to go out so seeing people stare is new to me. It's just rude and annoying. Thankfully it doesn't keep her husband from taking her out to places to see live music and such so she can get out of bed from time to time.

Yeah, you can't run and hide them from the world. That's one reason I started this IAmA

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Decent job with pretty good insurance coverage. Medicaid as a secondary source. My pocket as a third source. :)

How do you communicate?

This is a very hard subject. His methods of communication is very hard to judge sometimes. He'll flutter his eyes or move his jaw up and down sometimes. But I'm not 100% convinced that it's always intentional. He has a eye tracking device on a touch screen computer fixed to a stand in front of him. He just has to look at a particular area of the screen for so long and it'll "mouse click" there. There are boxes set up with different sins and words associated with them. He's still training with that. His eye movements seem sporadic most of the time as well. We don't really have a full proof method of communicating with him. It's a lot of judgment calls. Paying attention to his heart rate is another good indicator too. I'm going for some better bci (brain to computer interface) devices to be developed to help with his communication.

*edit: wrong word

Doctor here (not a pediatrician though).

What is your son's code status? Is he DNR (no not resuscitate) or "full code"? Has he been able to communicate enough to explore his wishes on this issue?

I ask because adults who are kept alive with very poor physical and mental status via mechanical ventillation and g-tube usually expressed some sentiment along the lines of "I want you to do EVERYTHING" to their spouse or doctor. In these cases, while it is unclear whether "doing everything" is the right decision, at least we honor that person's right to self determination. In pediatrics it is more vague since parents often make decisions for their dependent children. Seems like a hard issue to wrestle with.

Not 100% positive what you mean but I'll answer as best I can. If you mean whether or not to give him CPR then the answer is no, he is not DNR. Not sure what you mean by full code. And no I don't think he even thinks about that kind of stuff let alone understand what it means. I don't think a child should be allowed to make that decision. If there is some type of good prognosis then I'll take every chance I have to make sure my son has a fighting chance. He deserves at least that.

No questions here. Just wanted to say that I'm so sorry life threw you and your kiddo a curveball, but you sound like the best kind of person and you're lucky to have each other. I hope modern medical science makes things easier on both of you as the years go by!

Thank you and I share the same hopes with medical technology. Still keeping my eye on the bci type technology to interpret his brain wave patterns into audible speech. It's there just not there enough yet.

Is goat's milk nutritionally complete? Do you have to give him supplements or other items to make sure he is getting the nutrition he needs?

We have to supplement with a daily multi vitamin. He's also just recently had stage 2 baby foods introduced that he's doing well with. A jar is mixed in with 6 oz of goats milk every meal time.

Is he bed bound or can he use a wheel chair?

He is bed bound. He has a wheelchair for when we take him out to the park doctors visits, or just out in general. I move him around though. He's not always in his bed. Someone's I'll set him up in the living room on the couch or love seat or recliner so he can be apart of our daily lives as well.

Not implying you would, but is it possible for you to have his ventilator removed (euthanasia) if that is what you and his mother wanted?

Well I would completely disagree with it until I was able to accurately communicate with him to find out what his wishes would be.

How much do you love goats?

In all seriousness, I don't have a good question, but it's awesome that you're so open about your son. It's people like you who help further knowledge of disabilities and dispel ignorance.

Haha well considering goats are one the primary reasons my son is here today I must say I have some feelings for them. No-beasto.

That said, goats milk is pretty disgusting to me.

Did you know he was going to be born with such complications?

Nope, had no idea until he was born. And when he was born and want breathing and had apgar scores of 0 and 1 and rushed him to a different, better equipped hospital... One of the scariest moments of my life. More than the deployments in Afghanistan by far. I didn't get to hold him until he was 16 days old.

I want to hug you. My son was born not breathing and having a seizure. His apgars weren't as low as your son, but he still was rushed to the NICU, a Level IV. We couldn't even talk to him, he was on a cooling bed and hearing voices might raise his metabolic level. I didn't get to hold him until he was a week old. My husband held him the next day. I'm so sorry that you had to wait even longer.

It's a fleeting memory now. That time seems so distant but the lessons it taught me will stick forever. I'm glad you're there for your children. You sound like an amazing parent yourself

Thank you, that means a lot coming from an astounding parent!

How old is your son now?

Eighteen. If you ask him. In actuality, he's 3.5. He dreams big :)

Hah our 10 year old is the opposite. 10 going on 17. But I'm glad he had you around.

Question 1: if you were given the option to humanely and legally euthanize him, would you? What if you lived in a society where euthanasia for the terminally ill or severely brain damaged/disabled was perfectly acceptable. Question 2: Is there anything about your relationship with him that is satisfying to you? Can you please tell me about that?

Thank you!

No to the euthanasia because what if he wanted to live but just couldn't communicate it properly. I couldn't live with myself if I had him killed and wasn't sure that's what he wanted.

The biggest satisfaction I got from him recently was the fact that I think he was attempting to verbally communicate with me while I was talking to him trying to urge him to talk. He mostly just grunts and groans but the last weekend I had him I was just watching a movie with him, Finding Nemo actually, and he started making these moans like he occasionally does. Now I'm not 100% sure if this is what he was actually trying to do but I started talking to him and helping him physically move his jaw while he was moaning to change the pitch and sounds that were coming out of his mouth to try to show him that basic function of talking. For the first time ever he looked me dead the eyes stated doing it by himself. It may have been nothing but he seemed to actually take my command and tried to communicate with me. Something as little as that made my heart pump with excitement and satisfaction. You ever get so excited and happy that your eyes tear up just a little? That's how I felt about Joey moving his jaw while moaning. So yes, the satisfaction comes from the little things.

*edit: grammar

Great answers. Thank you

Thanks for asking!

Was you child born like this? If so at what point the the doctors tell you that something was wrong?

Born with congenital CMV so he was only born with a paralyzed diaphragm which caused him to be on the ventilator. His sucking reflex was non existent so they had to start tube feedings. He has a few other complications at birth but other than that he was normal. He had a seizure at 1 1/2 years old that lasted 12 hours which caused his hbi (hypoxic brain injury) which caused the physical paralysis and the permanent need for the ventilator.

Does he have any ability to move his hands or fingers? Probably not... But I was just wondering if he is able to hold a controller and play video games?

I suspect not.. But just curious...

Unfortunately no. There are adaptive buttons we've tried with him without much success like a very pressure sensitive, big button under his chin. He just want consistent enough with anything like that to prove useful.

I saw earlier that you said he was seizing for 11 1/2 hours and then put in a coma, do you think if he was put in a coma earlier that maybe he could have been (god this is mean) normal? Or was it the chemically indused coma that hurt him?

Well the seizure caused a lack of oxygen to his brain, which already breathing was an implicit issue for him. The issue I had was we weren't fully informed that seizures were a possible and drastic possible side affect of congenial cmv so we weren't prepared for it. I was actually at my uncle's birthday party when I got a call from my mom telling me they were life lining Joey to Indianapolis. My heart sank. Just that morning before I left he reached up and have me a huge hug. That was the last "normal" memory of him I have. I have lots of others but that one is the strongest not only because it was the last one but because he never initiated hugging before. It was like he knew something was up. I'm sure that sounds impossible and dumb but that's how I like to think of it.

Do you believe in god?

Not in the Christian sense. I believe there may be a higher intelligence of some kind, that it is a possibility. But I don't believe in the bible as a literal translation of past events. CERTAIN parts of it can be a good way to show how to live a wholesome, moral life but I don't believe in the concept of god as most religions do, no.

What about afterlife?

I don't really have an official stance on that. I mean I've personally witnessed some weird stuff in my life that has made me wonder.

Seeing your responses and the questions here... I have to wonder how your kid would see the world. Is he completely incapable of processing the surroundings and actions, or is it something similar to the protagonist in Johnny Got his Gun?

I had a surgery some years back and was in the OR for about 5 hours or more. I remember slowly coming awake in recovery with a dull ache in my abdomen, a desert-dry throat and eyes seemingly impossible to open. It took all my energy and at least three tries to just crack open an eye, and then everything was just very blurry. I could hear the surroundings, but couldn't even move my head. I was able to crook a finger with all my effort, but the button to the nurse's station was somewhere out of reach.

I was very tempted to panic. About the only thing that kept me from flipping the fuck out mentally was that this was temporary and likely a result of the anaesthesia and would pass. It did, but I can't tell you how long it took. It could be 20 minutes, or 10 hours. I had no way to tell that time was passing aside from counting my heartbeats. That had the extra benefit of keeping my mind occupied and away from the pain intensity that was steadily rising and to keep the panic that was around the edges at bay.

I can't tell you how long it was until a nurse came by with a cup of foam sponges in cold water to put in my mouth. It was one of the best sensations I had ever felt.

Logically, I'd say I spent maybe 2 hours total in that state before I started gaining movement in my limbs and be able to focus my eyes. But it felt like fucking forever, and because of that experience, I signed a DNR soon after, since death would be a blessing and I do not want to be forced to live a life anywhere close to that experience.

Well, I can't say with 100% certainty how he feels. He does move his arms and legs but very, very, very little. I'm pretty positive as an involuntary impulse. Like, I can't tell Joey to bend his knees and he will. He sits motionless for the most part except his head. I know I can't keep my legs sitting in the same position while conscious for more than a few minutes. But I wonder after having been like that for so long if the sensation of needing to move fade away. He will express pain and discomfort when he needs to. But he rarely does. And because I put myself in his shoes so much I tend to be moving him around all day. Sitting propped up by pillows, laying on his back legs straight, on back with knees bent under pillows, arms flat to the sides, arms raised and slightly bent on pillows, rolling onto his side with a pillow between his knees, etc. I try to constantly be moving him around and hopefully that helps ease the uncomfortableness if he does in fact feel that way.

Are you familiar with "Team Hoyt"?... http://www.youtube.com/watch?v=roZrT_tciKA

I have and they are amazing. If I still had the endurance I used to have I would definitely do something similar. However the swimming part wouldn't work so well with a ventilator lol. But l really admire the fathers dedication and determination and I would love to do something like this for Joey. I'd have to hit the gym like I was in the military again though. Lol. But we have other runs here like the color run. That would be so much fun for him... you've just inspired me! Thanks!

Goes to show that there's often a lot more going on in the brains of people like Rick Hoyt and Joey than doctors might think. Does he respond to music?

I haven't noticed so much of a physical response. I usually put on music in the mornings when I'm doing his morning bath and care and he seems to enjoy that. I'll have to pay more attention the upcoming weekends and see exactly how he responds to music.

I know this was a few days ago. Just getting back to it. I'm interested if you've tried this. Try headphones if you have them and Joey is okay with them to make the music the only thing he's hearing.

Well the next time I get them I'll see how he responds. Their mother put out a bogus protection order against me so I couldn't have them for my scheduled visitations for the holidays. She's got some mental issues, but that's for another day... Thanks for the ideas!

Where is the mother in all of this? I saw you wrote ex-wife.

Right. About that. I could do a completely different IAmA about that. She's the children's primary custodian but that may very well change in the future... she's not a very nice person. I'll leave it at that for now.

Nothing to say except my thoughts are with you and your family. You are a stronger person than I will ever be. Hugs from a random Internet person.

Never gotten a random internet person hug. Thank you, now I can mark that one off my bucket list.

Didn't see this question, read through most comments.

If he cannot talk how do you know that he is truly happy and wishes to live this way. I did see the question about euthanasia being only 24 myself I couldn't imagen living like that or having to take care of him. You sir are truly a great person and I wish the best for you and your family.

I know he is happy by the way he reacts to the world around him. He may not be able to verbalize with words, but he does have his own funny sounding laugh. I'll have to try to catch it on digital sometime and upload it. He smiles all the time and when its time for me to pick him up from his mom's you can see the excitement all over his face.

That's awesome, I would love to see that. I know someone asked about a photo of him, did you post one yet?

Yup. Should be on an edit at the top. :)

Where do you see his future taking him?

That I have no idea. I've often wondered this and debated what to do about it myself. It's a topic I really need to focus on. I'm not really sure what we can do about it for now except take care of him and love him the way he is.

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He is a very integral part of our family cohesion. And no problem for sharing. He loves attention and when I tell him about this he'll no doubt be very excited.

The healthcare system here has its ups and downs. Overall its been a good experience. But sometimes you get nurses, doctors, therapists, etc who seem to be reluctant to have any kind of positive future prospects for Joey. This doesn't happen often but when it does it can be very frustrating. I've dealt with healthcare systems from four different states. Indiana, Illinois, Kentucky, and Tennessee. I'd have to say we've had the biggest problems from Kentucky. It took them over 3 months to approve some prescriptions for some of Joey's medical equipment that was supposed to be changed out once a month. This put him at a huge risk of infection and as much as we pleaded they refused to give us medical supplies for him because it hadn't been approved yet. Too much red tape.

I do not get any kind of financial support due to Joey's condition because I am not the custodial parent. His mother, however, does.

Not really sure what bubble tubes are but we've tried lots of different therapy techniques with Joey. He seems to respond well to visual stimuli better than sound. I don't know a lot about the different types of therapies and usually just go with what the therapists tell us. The few we've had have been very knowledgeable, kind, and easy to understand so I haven't really questioned much of their advice.

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You too! Happy Holidays!

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Communication is hard. I'm unsure of it sometimes but I just go along with our whether I think he's communicating or not just in case he actually is. He'll answer yes and no questions sometimes by moving his eyes up and down or side to side or by moving his jaw up and down. He has a communication board but that thing is bulky and not efficient at all. Never use it. He has a touch screen flat screen computer on a stand in front of him with eye tracking hardware and software on it that senses where he is looking and after a given amount of time at looking at the same spot on the screen it will automatically "mouse click" for him. We use this with specialized software to click on set boxes with pictures on them to soak out loud for him. His eyes move around so much though it's not really accurate. I'm not sure if he can't control his eye movement completely or not though.

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Yeah but he's having a hard time using it. He's been getting better but his eye movement seems sporadic at times too. I just hope that with time he'll get really good with it. It amazes me how far technology has come. Can't wait until bci devices allow him to talk out loud by just reading his brainwave patterns.

How much does he communicate, and how (since you said he can't communicate verbally)?

Very little. Mainly yes or no questions to which he responds by either moving his eyes side to side or up and down or moving his jaw up and down and to be honest I'm not even sure how accurate that is. Like is he really trying to answer me or is it just a reflex. The optimist in me says of course he's communicating with me while the pessimistic me thinks that it might only be a physical, involuntary action. But just in case, I treat it like he's really answering me because if he is, I know I'd hate to be questioned and unsure of if that was my only form of communication. I really wish there were a more positive way to be sure how he is communicating. If you can think of anything let me know! Great question!

Would you say your son was in any way responsible for your split from his mother?

How much additional stress did this cause to your relationship? Is there anything you'd do differently? How do you afford all the medical bills? Do you have a rough estimation of how much this has cost you?

Is your child ever curious as to the world around him in the sense that... does he realise he's "different" and ask questions about this? If so, how do you deal with telling a child this?

Does he display an awareness of his life and unhappiness? Or is he basically 'taking every day as it comes'?

And the last one - and probably the worst to ask - is his life expectancy in the 'normal' range? If so have you and your ex-partner had to plan for when either of you become too old?

Apologies for all the questions, my somewhat large group of friends turn to me a lot for advice and they're starting to have children now. I'd like to know somewhat how a person whose lived with this deals with it :/

No problem. I'll have to answer three when I get off work tonight as I can't see all the questions as I reply on my phone. But I'll get back to you asap!

*edit: Joey had no affect in my relationship with his mother. Her getting pregnant with her ex-husband's baby is the primary reason we split. At first, it was all new and we didn't know how to handle it properly so it was causing stress on us. But after we adapted it wasn't a big deal anymore. He was just like taking care of any other kid but with a few extra steps.

Medical bills, I have an ok paying job, not the greatest (especially after shelling out child support every two weeks...) but it has pretty decent medical coverage through Blue Cross Blue Shield. On top of that he has Medicaid due to the fact that he is disabled. A rough estimation of how much it costs? Hmm, its hard to say. He was in Riley's Childrens Hospital for the first 16 months of his life and if I remember right it was around 12k-15k a day there. Now that he's home he has almost daily nursing care, medical equipment; some changed daily and some changed once a week and some changed once a month. His once every few months visits to neurologist, pediatrician, orthopedic, physical therapies, occupational therapies, etc. I have no idea how much all this stuff costs but I'm sure its not cheap. Out of pocket expenses? I have no idea how much. For whatever reason there are some things that certain doctors don't accept certain insurance for and that stuff has to come completely out of pocket. For some stuff there is just a co-pay. I've never really kept up with how much it has cost me.

I'm sure he realizes he's different but he's never expressed any concern or questioning about it. I think he just accepts it and doesn't dwell on it. If he ever does inquire about something like this, I'll just have to break it down for him and let him know that although yes he is different, he is no less special and loved than any of the other kids.

He does express emotion. He laughs and cries appropriately. When I'm talking to him, sometimes he'll roll his eyes at me. Not sure if its a involuntary reaction or if he's being a snot lol. Problem is, he might realize that its hard to tell the distinction and uses it to his advantage. I know I would if I was in his position. :) And yes, we take every day as it comes. He has planned out routines but I like to be spontaneous with him too.

Life expectancy has never been a discussion with his doctor. In terms of overall health, he is actually usually pretty healthy. But when you have monitors on you 24/7 telling what your heart rate, oxygen level, rate of breath as well as getting daily vitamins and preventative medicines then I'd expect no less. And unfortunately the discussion of what happens to him after me, my current fiancee, and my ex-wife can no longer care for him hasn't came up yet. This is really something I need to work on. All good questions. If you got any more, lay em on me. :)

How does he survive off goat's milk...? Am I missing something?

Goats milk and supplements grounded up into a powder added to the milk. We've recently started adding stage 2 baby food into his milk as well and he's tolerated it a lot better than he used to.

Was your family and Joey in Disney world in the summer of 2009? I vaguely remember seeing a boy there that looked the way you are describing him.

No he has never been to Disney before. He's been to Disney on Ice in Indianapolis though and loved that. I make ok money where I work but after child support and bills, I barely have enough to get by so until the time comes I have a means to save up enough money we won't be going to Disney any time soon. lol Although I'm sure he'd love it, I need to look into how much tickets are and start saving up some money. That'd be a great birthday gift for him. Thanks for sparking the idea! :)

Is he suffering? Are you sure he wants to live?

He suffers sometimes. Just like any other person suffers sometimes. I don't believe he is suffering more than an average person does. He seems to have a positive outlook on life. Laughing and smiling. I'm not sure he doesn't want to live so at this point, yes I'm positive he wants to. Can you remember when you were 9 years old? Did you think of life and death at that time? I'm sure he understands the concept but I don't think he grasps what it actually means. I've never talked about what death means around him so I'm not sure he does know. But unless he explicitly tells me that he wants to die, I'm going to assume he wants to live. That's all I can do.

I volunteer at a place where some kids can't communicate verbally. What is the best way to communicate besides sign language?

Honestly, getting to know them on a personal level. Everyone has a different way of communicating and unless you get down to their level and understand what this movement or that sound means noone will ever truly understand what they are trying to get across. A lot of it is judgement calls. For example, I'll pick three dvds and show them to Joey one by one and ask out loud which one he wants to watch and repeat the name and hold the case in front of him. I'll watch his eye movements to make sure he's tracking first and paying attention to what I'm putting in front of his face. Sometimes he'll close his eyes or move them side to side. That means no. When he moves his eyes up and down or his eyes flutter around really fast or his jaw moves up and down that means yes. If he just closes his eyes and doesn't open them for a prolonged time that usually means either he doesn't want to watch any of them or he doesn't want to watch a movie at all. There's more to it than that but someone that doesn't know Joey wouldn't be able to make heads or tails of what he's trying to say. Without experience there is no knowledge.

Hi there!

I don't have a question, I just wanted to say how inspirational to hear how loving and committed you are to your son. I read that you and his mother are divorced? I think to have to go through the challenge of joint custody is hard enough, but to do so under more difficult circumstances like yourself is very admiral.

So thank you for doing your AMA and it's nice to see there are fathers like yourself out there!

Well thank you! The good father's don't get enough recognition. I appreciate it. I'm not trying to be egotistical or anything but I've seen and experienced dead beat dads and I made it a personal vow to NEVER be like that towards my own children. I know I'm a good father, regardless of what picture their mother tries to paint of me. But that is neither here nor there. Thanks again!

Is there any hope of a normal life for him?

Depends on your definition of normal. He won't be a contributing member to society through any conventional means but I'm hoping his condition will help teach people about different aspects of life they normally wouldn't consider.

Very few people make some major difference in the grand scheme of things, and many that do (and this is all subjective and relative of course) are not recognized. Every human being adds something to the world, and what you described in your son I think is no less legitimate than anyone else's "contributions" in their lifetime. We're all the same, so no one human being is in a position to judge whose "contributions to society" are more valuable than others. I admire your positivity and have confidence that your kid will make a difference in the world on some level, just like the rest of us.

Well as of typing this, this thread has 222 upvotes and 68 downvotes. Joey has obviously affected at least 290 people today alone. That's a pretty decent size contribution for a 9 year old. :)

I'm pretty sure less than 5% of reddit traffic (millions of unique hits per day) is from logged in users. Fewer than that upvote everything they see. A lot more people than that have been reading this.

Hadn't even considered this. Everyone has some sort of purpose, even if it doesn't seem like much to one person it can mean the world to another.

I hope that in my life I mean a lot to a few people. That's all anyone can really do, and it's all that matters in the end.

I'm sure you already do. I'm interacting with you personally now via Joey so now you've had an impact on my life. And with your kind words it was definitely a positive one. This was my first AMA on Reddit and I was actually pretty nervous about it. Wasn't sure what kind of reaction it was going to get but its been an amazing experience so far because of people like you. Thank you so much.

Excuse my rather direct question, but I'd really like to know what sort of life he has - I mean, living in a vegetative state - is that living?

He's not vegetative. He responds to stimuli, he will directly focus on the tv screen when a movie is on wants to watch. I'll kinda rough him up by shaking him a little and he'll start smiling. He likes it when I play fight with him. I'll take his wrist and make him punch me or his siblings and he smiles and sometimes laughs out loud. Not a normal laugh but a Joey laugh. More of a prolonged squall but you know when he's laughing. It's contagious. He's overall happy. Smiles and laughs a lot. When he's in pain his face contorts to a face in pain and he'll cry. That's the worst. When I know he's in pain because he cries like a normal kid but the sounds he makes are just different but he can't actually tell me what's wrong and I have to go over his entire body trying to figure out what's wrong while he's like this. It's hard not to cry myself when I see him like that.

It's totally alright for a biz professional eating lunch at a busy airport to chop onions, right?

Depends, red or green onions?

wtf happened him? If you knew this was going to happen before hand, would you/your wife talked about an abortion? Thanks for the AMA!

We had no idea that this was going to happen. We were completely blind-sided. Now, if we knew it was going to happen beforehand? That is a tough question. One that I've never really put a lot of thought into because I haven't had to make that decision. I don't know for sure, but I would probably be against an abortion. I know he has a disability but he is happy and that is what is important. Everyone's reality is a perception of their own so to say he would be suffering and miserable would be your own opinion. Its some extra work but I'm very willing and happy to deal with it.