A father’s breaking heart

I had this great plan to have this video blog up and ready for you all this morning and due to technical issues, that’s been delayed by a few hours. 

I think that it’s still important to watch because I explain in a very emotional way, everything that’s happened over the past two days.  Having said that, I’ll attach it to this post when it eventually becomes ready.
The past two days haven’t even begun to process within us yet.  As most of you know, Gavin arrived at Akron  Children’s Hospital around 9am on Monday for his monthly IVIG infusion. By 9:30 am, he had entered another autonomic crisis and collapsed.  He was unresponsive but Lizze was eventually able to get him up and moving. 

At this point, Gavin was completely disoriented and was walking into walls and even the door jam on the way to get his vitals.

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Next,  he completely lost all of his color.  He was immediately taken to the ER and rushed back without delay.  His heart rate was out of control and he was experiencing orthostatic heart rate and bp problems.

The entire process took about 5 hours to get him stabilized.  I think we were discharged around 2-ish in afternoon and he’s been as stable as he’s going to be since.

He did miss his IVIG infusion because it wasn’t wise to stress his body out anymore than it already was.  He’s scheduled to have it done next week, but now he’s behind.

On Tuesday, we returned to the Cleveland Clinic to see Gavin’s autonomic specialist for a followup and med changes. Gavin did great in the car on the way up and didn’t experience any autonomic issues, which he’s prone to while in the car.

After meeting with Dr. Moodley, we learned a few things that neither Lizze or I had been aware of.

Apparently, Gavin condition is rare.  This much we knew. However, we didn’t know just how rare it is.  Dr. Moodley treats children with autonomic disfunction all the time.  There are many children with POTS or pediatric orthostatic tachycardia syndrome.  However, and this is a very big however. Gavin is the very first child to be treated at the Cleveland Clinic for autonomic crisis.

In fact, this is so incredibly rare, that Dr. Moodley has only ever seen 2 other cases in his career.  He’s treated a child in England and one in Canada. That’s it. 

This is so rare that there is almost nothing out there about this. 

I don’t know what the statistics are of adults with this problem. However, as far as children with autonomic crisis concerned, Gavin is only one of 3 that we are aware of.

The put this into context, the Cleveland Clinic is one of the four best hospitals in the entire United States. People literally travel from the far reschedule of the globe to seek treatment at this hospital. So for Gavin to be the very first child to present with this condition, at the Cleveland Clinic, it’s scary.

It’s scary because there really isn’t enough known about this give any sort of prognosis. 

When I say by we are blessed to have Dr.  Moodley, I truly, truly mean that.  We are incredibly lucky because he has actually treated 2 other kids with this condition. I don’t know we could ever find another doctor that has even heard of this, let alone treated it. 

The other thing that we learned is just how serious this is.  We were already taking this very seriously but we didn’t know just how fragile Gavin actually is.

Basically, every time that Gavin enters a crisis, his life is in danger.  Things could go very bad, very quickly. Once he’s in a crisis, there’s never a guarantee that he will come out of it.  If you think about it, his brain stops working right, when this happens.  It stops controlling his involuntary functions correctly.  His heart rate, blood pressure, urinary and digestive tracts are profoundly impacted by this. Those are just the obvious ones. 

Even worse is that there’s really no way to predict if and when this is going to happen. Just about anything can  trigger a crisis.

With proper medication using the only two medications that are known to help, we can in theory reduce the number or crises he has. 

Making things even more complicated, as if that could even be possible, is the fact that Gavin isn’t living at home. He been staying with his Grandparents because of his extreme behavioral problems.  He was simply too dangerous to have at home. 

Because of just how fragile Gavin’s health is, he has to be extremely closely monitored.  His dietary intake has to be tightly controlled as well as his physical activity and weight gain.  If he misses his meds, he will go into a crisis. If he eats too much, he can go into a crisis.  If he drinks more or less than 2.5 liters of water, he can go I to crisis. 

He’s unable to really do anything that will raise his heart rate or put strain or stress on his body, as this can trigger a crisis.

The list goes on and on.

The only way that we can ensure that these things happen is if he’s home and we do it ourselves.

Bringing him home but everyone at risk but not bringing him home, puts Gavin at risk. How do you choose? There literally aren’t any other options at this point, it’s one or the other.

My heart is completely broken and I’m stressed out beyond anything that I’ve ever experienced before.

Lizze and the boys have been traumatized by Gavin over the years and the very thought of him moving home sends Lizze into a panic attack.  Gavin has been diagnosed with reactive attachment disorder as well and essentially, that means that he’s unable to bond with people.  He’s incapable of feeling remorse and truly doesn’t care who he hurts, as long as he gets what he wants. 

RAD kids target the Mother and no one really knows why. 

I’ll just say that you can read our back story to learn more.  This is just one of those things you have to accept, even though it’s so difficult to believe. 

I’m truly at a loss as to what we do.  Lizze and I had a huge fight over this yesterday because we are so emotionally entrenched in this and no matter what we do, someone will pay a price.

We are being torn apart by this whole thing and I truly do the know what to do. 

Lizze’s physical and emotional health and is so fragile that she can’t cope with Gavin coming home and neither can the boys.  However, Gavin’s life is in danger and if we don’t bring him home, there is no way to make sure that what needs to be done with him gets done.

On top of this, we have everything else falling apart around us. We have until the 10th of March before our heat is shut off, we’re behind on the mortgage and the car.

I know that it may appear that we are irresponsible parents for letting go things get out of hand.  I’ve had that pointed out by some people.  However, I would like anyone…………anyone to walk a mile in my shoes, deal with the crises that I’m managing daily, do it alone most of the time because your spouse is chronically ill, have two other special needs children that need your constant attention, run this website, work and still manage to give back to the community.

I’m not patting myself on the back at all.  In fact, I view myself as a failure much of the time because I can’t always provide what my family needs. The only reason I even said those things was because  it only are they true, but it may also help to give anyone else prone to judgement, a bit of perspective. That’s all. 

I’m not bragging because I don’t feel that I have anything to brag about. 

I truly wouldn’t wish this on anyone.


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. 😉

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rmagliozzi

Rob, you are definately not a failure. I have no idea how you hold the whole family together, but you do. You do whatever you can to take care of your family. your circumstances are extraordinary, and most people could not deal with everything you have on your plate. I will keep Gavin in my prayers.

Tara

I’m new to your blog and to your story, but I stumbled upon it while reading Autisable. It especially caught my attention because my niece, Haley is also at the Cleveland Clinic. This is her second time there. They help her tremendously. The hospital is such a miracle. I hope that they will be able to work miracles with your child as they have with Haley. Praying for your strength and that things will start to fall into place for you. Hope things begin to look up soon.

lostandtired

@Tara It’s so nice to meet you. Thank you for your support. The Cleveland Clinic is absolutely amazing. I don’t know where we would be without them. I truly hope that your niece Haley is doing well. 🙂

KathrynRogers

Will say a prayer for the family, don’t give up hope.

lostandtired

@KathrynRogers thank you 🙂

SarahBolier

I wish there were the right words to say, but what I just read gave me the chills. I wish there was something I could do to help. I don’t have much but I will give what I have if it will help. I pray for your family everyday along with mine and all the others who need a damn break and for things to not be so crazy every day…you are strong for what you do along with Lizzie and it takes special people to raise these kids! The nurse at my sons school this morning said “I don’t know how you do it, it must be hard” Well I said yes it is  hard I don’t know how I do it either I just do. Makes you feel different from others, almost excluded. My son Colton is 10 and has autism, adhd, and is struggling every day just lie everyone else to make it.

lostandtired

@SarahBolier Thank you so much. Your thoughts and prayers are more than we could ever ask for. Thank you so much. I can soooo relate to what you are saying. For me personally, when someone tells us they don’t know how we do it, it almost validates us and in a weird way, it feels nice. 
 
Your also right in the fact that there is little in the way of help out there and getting a break is a foreign concept for most of us. My heart breaks for you because I can relate to what your going through. We need to form a club or something. A place for all of us to go and not feel so alone. I have the support forums but that’s kinda slow going. 
 
I’m going to try to figure something out because there are just so many people out there that could find comfort in connecting with others in a similar situation. Stay strong and know that you are an inspiration to  me. 🙂

SarahBolier

@lostandtired
 🙂 I think your blogs and page is like a club for us all to talk about whatever is going on in that moment because we can understand what each other is going through and to know someone cares and you are not alone. That makes a big difference and is very helpful! I also agree there should be more resources out there for us parents and our kids. It’s like trying to find a needle in a haystack…

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