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Posts Tagged ‘Anomalous Left Heart Coronary’

My Big Fat Life – Gabriel Update

In Uncategorized on January 14, 2015 at 4:33 am

I didn’t want to talk about this until I had the appointment, but I finally got Gabriel in to see a pulmonologist.

Since we are now one episode away from the doctors wanting to remove the pericardium sac of his heart, I wanted to make sure that they looked at all things before moving forward.

A friend posted something on Facebook, and the in the comments one of the women mentioned something about pleurisy. It reminded me that one time, early on, one of the doctors said his symptoms were like those of pleurisy. I didn’t think much of it, because I didn’t know much about it, plus it was early on in and I didn’t know a lot about a lot.

The woman provided a link, and I clicked. You know all those symptoms the doctors have told me that aren’t textbook, and baffle them? Well they are textbook, but for pleurisy. This motivated me enough to get a referral to the pulmonologist and get their opinion on things. Since I haven’t been able to shake the feeling they are missing something, this sort  of confirmed my concerns there might be other things going on. At least some very suspect symptoms that are worth looking into.

He agrees that while Gabriel does have the symptoms for PPS (posterpericardiotonomy syndrome), he also seems to have some symptoms of pleurisy. He feels that Gabriel definitely needs a cat scan of his lungs when he gets sick again, to look at things more closely before they even consider moving forward with the pericardium removal.

Hopefully Gabriel won’t have another flare, and perhaps this is all just precaution. At the same time, I have been preparing myself for the fact that he may very well have to have it done, though I pray he won’t. At least we are one step closer to hopefully finding some answers to the symptoms that are baffling his doctors, and stressing his body out.

 

 

 

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My Big Fat Life – Hallways

In Uncategorized on March 27, 2014 at 12:02 pm

Well… I write this as tears spill from my eyes. Gabriel is sick, again. We made it almost 3 weeks this time before the pain started. I took him to the cardiologist the day before yesterday, and an echo confirmed the fluid has started to build up around his heart again.

I can’t begin to describe how devastated I am.

Yesterday we saw the Rhuematoligist who put him immediately back onto Prednisone. He wants to add another medication to the mix, but is allowing me some time to research both of the ones he mentioned, since they will be a longer term treatment. One is a proven treatment (Methotrexate), though there is not a real traditional treatment for Postpericardiotonomy Syndrome. The other (Coholchicine) is showing some help in treatment though it is a fairly newly used drug for what Gabriel is dealing with. I am just at a loss trying to make sense of everything in the midst of feeling just so tired.

Yesterday the Rheumatologist started to talk about some longer term options, and I asked him if we could have that conversation in the hallway. As we stepped out into the hallway and he started telling me his thoughts, I realized that a majority of my conversations about Gabriel have taken place in a hallway. When the Dr first told me that Gabriel had something wrong with his heart, it was in the hallway at Doernbechers. When the news isn’t good, the conversations take place in the hallways outside the room of where my children are sitting. I can’t begin to count how many tears I have shed in the hallways between the hospitals and offices of the doctors he is seeing. When he had his echo this last time, when the Cardiologist said he saw fluid, I quickly excused myself and stepped into the hallway where I proceeded to lose my shit. The Dr stepped out and put his arms on my shoulders as he tried to comfort me in the moment, but even now I struggle with tears and how disappointed I am. I really, really wanted this to be his time to be healthy and not have to deal with anymore of this. I am trying to learn how to proceed with cautious hope, because each time I hope, I seem to really take it hard when things don’t work out.

Gabriel asked me if he was going to die. I can’t even begin to tell you just how hard it is to hear your child ask you such a big question. It just hurts to know he even considers this as a possibility. Yet, I have feared the same thing so many times.  Today he got tired of it all and asked me why he was given a difficult heart, and why God would do such a thing. How can I give answers to something I have asked God myself, so many times?

I need my son healthy. I want my son healthy. I want him to never have to worry or even think about his mortality at the age of 13. I need my child to have a childhood full of happy memories, and life. I need my son to have something positive  happen in his life right now. I need my child to smile.

I need some good news. I need kind words. I need hugs. I need people in my life to remember that I am not always as strong as they think I am, and sometimes I need it recognized that I have moments I feel very weak and vulnerable. I need to keep focusing on the positive and remember that there are people doing everything they can for my child. I need to feel protected right now.

Sweet Jesus…… I need to feel protected right now. I am not even sure what that looks like, but I know that is exactly what I need right now.

I need my son to heal.

I need answers.

I  need to spend less time in hallways.

Gabriel Echo 19

(Gabriel during his echo on March 19th, the one before last)

 

 

My Big Fat Life – Here We Go Again

In Uncategorized on December 1, 2013 at 11:02 am

One of the few things people know about me, is that I have to listen to R&B when I write. I have never been able to figure it out, but as I sit here I have Toni Braxton blaring into my ears. I have to say she makes me feel I have my groove this morning, and I can tackle just about anything. Perhaps that is the connection.

Gabriel is sick again.

 

He was off the steroids and seemed to do really well for a couple of weeks, and then he started getting sick again. I knew the signs, and as soon as I saw them I took him back to the cardiologist. Long story short, he was dismissive and told me that Gabriel probably just had muscle cramps. I had seen this four times already in Gabriel. He starts to hurt, and within 3 days he starts to run a fever. We saw the doctor on the third day in, and later that evening the fevers started. Finally his pediatrician ordered blood work and sure enough his lab results showed he had high numbers indicating inflammation. I would not give up taking him in to be seen until someone listened to me. I find it really annoying when you are a parent, and you are dismissed when it comes to your children. We are the parents, we know out children. I also know Gabriel never felt like this until he had the surgery. I have no idea why, but every time he starts to get sick now, he gets this pain in his right shoulder blade. Before you know it, it moves around and the fevers start. Soo when the cardiologist told me that it was just muscle cramping (and I didn’t know what I was talking about) that just made me push that much harder. In defense of Gabriels cardiologist, it wasn’t his typical doctor. He was on holiday, and so this was a doctor that was filling in. 

The pediatrician put Gabriel back on a high does of steroids, and by the next day my son was up and dancing around in the kitchen. It was nice to see him feeling better. When his cardiologist came back from holiday, we went in to see him and talk about a game plan here. Gabriel can’t live on steroids the rest of his life, and so I wanted some answers. He decided that adding the care of a rheummetoligist might help, since they deal with inflammation of the heart sac, which is where everyone seems to think this is where the inflammation is taking place.

We were so late for our appointment. I was trying to get out the door and the key broke off in the lock on the way out the door. Then finally on the road we were stuck in traffic 4 lanes wide, and backed up for over an hour. By the time we got there, we were already so late. Before we left, the dog sneezed on my tea. It was probably a dog curse.

The doctor was really nice in a quirky sorta way. I saw the potential for the God complex that I have over the years when working with specialists, but he seemed genuinely interested in wanting to help as much as he could. It wasn’t so reassuring when he told me that he had only seen one other child post op who presented with heart inflammation, and that child responded first treatment. We are Gabriels 4th. He told me that all the people he sees with heart sac inflammation are not post op, so not related to a surgical procedure, and some of those people have to have the sac removed from their heart in order to make it stop. I already knew that was a resolution for some of the cases, but I have been really keeping that to myself. I still don’t like speaking that out loud, because I refuse to even go there in my mind yet.

So we left with yet another round of extensive steroid treatment. On Friday I spoke with the cardiologist again and he told me that Gabriel is stubborn in healing, and he is hoping that another treatment, with a very slow taper, will give more time for his heart to heal from the surgery and hopefully by the time he is off of it, he will be just fine. He said healing in total really takes up to 6 months. I asked him about what the other doctor said, and I talked about my concerns that maybe the inflammation could be from somewhere else in his body, related to the surgery. I asked him at what point we could have a cat scan and heck things out. He told me that if Gabriel doesn’t respond to treatment this time, that he will do a cat scan. While right now we have no answers, and I am riding this wave of emotional of worry, I feel good that we have a plan. The cardiologist also assured me that they will now listen to me next time, and when I come in knowing my son is ill, they will be sure to not be so quick to dismiss it. This is a good thing, because watching my son in pain until they decide to take action, is just wrenching.

Gabriel is starting to feel weary from the constant ups and downs of feeling like shit. He told me the other day that he feels like he missed out on his whole summer and having fun. I feel awful for him, because I know he is right, he has. He wants to go have fun so badly, all of the boys do. I try to think of things we can do, but I also have to be careful not to take Gabriel into some major crowded areas where everyone and their dog are coughing. I really feel for the kid. He needs to have some serious fun. I’ve got to some up with ideas.

In other news, I filed a complaint with the Department of Education in regards to removing my other sons aide from his IEP. You would think this IEP team has better things to do, than try and bully a Mom who has other things going on, but I am starting to feel like they are taking advantage of fact that I have my head wrapped around other things at the time. Which, I must admit, just pisses me off more. When I am stressed out, or I am faced with something, I tend to fight that much harder to push through it all. Defeat is not in my vocabulary. If things don’t work the way I believe, then I simply feel that maybe that is divine intervention leading me another way for whatever reason, but I do not back down to advocating for those I love and doing what I believe is right.

That all being said, I must also confess I would seriously love a hug right now. Less telling me how strong I am, and more hugs are absolutely in order. I could go on some wave of how difficult this can be at times, but I am pretty sure you have figured that out already.

Someday I will wear mascara again. I believe this.

 

 

My Big Fat Lesbian Life – His Heart

In Uncategorized on August 15, 2013 at 10:29 pm

I’m writing this from a hospital room where I have been for a week now.

Gabriel had open heart surgery a week ago. The surgery went smoothly, but the recovery has been really difficult to watch, as a parent.

When we arrived for surgery, I was so anxious. My son was going to have surgery and I needed to trust his life to people I barely know (which, is actually why the surgery didn’t happen sooner. I’ll share more after he’s home, but I decided not to have the hospital who diagnosed the defect do the procedure). I was actually able to stay with him and walk the halls all the way until they wheeled him into the operating room area. I watched them past the doors until they were no longer in view. Noting can describe the feeling I had at that moment. Nothing. So I won’t even try.

I made my way to the family waiting area, where I proceeded to hold his clothing he’d worn to the hospy that morning, in my lap. I kid you not, the moment the surgeon came to tell me the surgery went well, I wanted to hug him (and I did).

I was able to see him after they’d situated him in the ICU. He was asleep and on a ventilator. The relief of knowing the surgery went well, collided with the stark truth he needed a machine to breathe for him. Tubes everywhere. My little dude was just there, sleeping, and unable to breathe on his own. I stayed by his side, refusing to move from the chair, because even 1 foot away seemed too far away. It’s the utmost feeling of helplessness to see my child in such a state, and lack all capability to help him.

When Gabriel finally started to wake up, the look in his eyes of realizing he had tubes breathing for him, was so wrenching. He laid there unable to talk, trying to signal to me that he wanted the tubes out. Out of instinct I handed him my cell phone and told him to text me. He texted he felt like he was suffocating and couldn’t breathe. I had to try to assure him that the machine was breathing for him and he’d be okay, but then he started coughing and choking on the phlegm that was accumulating in his throat and tubes. His eyes wide, and there was nothing I could do. At one point he started throwing up while on the ventilator, sending me into the hallway screaming for help. After he had been on the ventilator for a day, my rock star son grabbed the suctioning wand from the nurse and did it himself. I think he was tired of feeling like they weren’t getting it all out of his mouth.

So fast forward from those terrifying first 48 hours (they really are)… Gabriel still has fluid around his heart. He has two JP tubes emerging from his abdominal wall to drain the fluid from around his heart, and two pleural caths, one from each lung. They started him on steroids yesterday, in hopes it will start to dry things up. It has a bit, but not enough to remove the tubes. It’s scary. It’s a reminder that we may have taken some big leaps, but we’re not out of the woods. I haven’t left his side yet, and I honestly don’t think I can. I’d rather spend all the time he needs to up here, if it means that when we go home we can go with the peace of mind that the fluid is where it needs to be. I’m still worried. I really want my son to be okay.