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Posts Tagged ‘sick’

My Big Fat Life – Gabriel & Day One

In Uncategorized on April 17, 2014 at 11:13 am

Gabriel took his first colchicine pill this morning. It’s a little purple pill. It’s weird to think how much hinges on that little thing producing huge results. It reminds me of something Gabriel shouted out once, while trying to wrestle with his older (and much bigger) brother, Ben. Keep in mind this was before I knew he had a heart defect. I probably would have offered him a coloring book on the history of non aggressive play, with some soft and non threatening crayolas, had I known before they tried to do all of that play wrestling that brothers do. But I remember it so clearly when Gabriel was standing up and trying to get Ben into a mock head lock. Both boys were laughing so hard, and through the laughter Gabriel shouted out ” I may be small, but I am much bigger than my size!”. Those words were so big to say, as Gabriel has always been much smaller than his older brother despite how close in age they are.  I am hoping that is the case with this  little purple pill as well. I am hoping it is much bigger than its size, because it has a heck of job ahead. I am pretty sure Ben let Gabriel win that day, and I hope that little pill helps Gabriel win again.

When the Rheumatologist first told me about the colchicine, he told me that he had used it in only two other children with pericarditis, and without good results. He went on the state that he had just recently read an article in the New England Journal of Medicine, that says colchicine had showed promising results from preventing/reducing recurrence when used with Prednisone. What they are doing, is keeping Gabriel on the prednisone, and starting colchicine at the same time. He will taper off the prednisone over the course of weeks, until he is on colchicine only. Then we wait. Typically Gabriel starts to get sick within 2 1/2 weeks after stopping prednisone. If he can maintain on the colchicine, then that little pill is doing great big things. If not, then.. well, surgery.

When the Rheumatologist told me about the drug, he gave me a choice between that or methotrexate. The pros of colchicine are that it works much quicker, and Gabriel really needs to start getting better sooner than later. I was concerned that he hadn’t seen promising results though, and I needed more answers. Someone forwarded the report to me, and I was able to find some more after I Googled the study. I had questions about the study, so I emailed one of the investigating physicians in Italy, and asked a heap of questions. I was really worried he might not email me back, but within the day, he answered.

We exchanged emails back and forth for a few days, and he was able to answer my concerns. I started asking as many questions to cover all the basis I could. I wanted to know how many were teenagers, how many had underlying health issues, and so on. Things I felt I needed to know to help me make the most educated choice for Gabriel and might give him the best chance at feeling better, and avoiding surgery. The investigating physician stated that colchicine is worthy of adding to his prednisone treatment, so this seemed to be looking like this might be the medication worthy of a try. Even though the Rheumatologist hadn’t had promising results in the past, we all know Gabriel doesn’t seem to respond typically to a lot of things, so maybe he is the one patient that will turn this around. That is my hope, anyways.

So here is to little, but big things, today.

 

(Gabriel and I, 4-2014. I have no clue why he is squinting. When I asked him why he was, he couldn’t remember either)

Image

 

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My Big Fat Life – Waves

In Uncategorized on December 5, 2013 at 9:53 pm

When I was pregnant with Isaac and Gabriel, I went through a very dark place in time. It was really difficult. I carried death and life with me every single moment. I couldn’t walk away from it, I couldn’t deny it. Every time I looked down, or in a mirror, there it was. I was pregnant with a son who would not live, and a child who would work so hard just to live.

The time I went through was one of the worst times of my life. It took me a lot to make it through that time. I yelled at God, I screamed at people I loved and cared about, and I often struggled with analyzing every single thing I did that could have caused the pregnancy to turn out like it did. Every medication, every food, every breath. It just seemed I couldn’t get out of trying to figure out what I could have done differently. The truth is, there is nothing. I understand that now, but try telling that to myself 13 years ago, was a whole other story.

When I was assured more than once, that Gabriels heart was okay after her returned from the NICU, it took me time to chill the heck out. I watched him breathe, a lot. Every little sniffle was a red alert to me, and I just wanted to be on high alert. It took time for me to get out of that crisis mode. Years even.

When this past June it was discovered that in fact he did have a heart defect since birth, every single fear that lay in hibernation, emerged and with a roar. When I stood out in the hallway and the very doctor that told me so many times before my son was okay, was now telling me that they found something.. my whole world changed. I changed. Not who I am as a person, but how I see things. Things that I used to get really upset over, are now no longer the biggest things for me to stress about anymore. Yet some things I never considered I really thought about, I think about a lot more. Like, if today was the last day I was to live, would I be happy with where my life is? Would I regret something? Would I have wished I didn’t compromise the things I really believe in, just to make others happy?

I also find that I often get really annoyed with some people easier. In me, I know that all people go through things that are relative to them, and while it might seem trivial to me, to them it is a big deal. It’s happening in their life. Yet, sometimes I cringe when I hear people complain about the cold their child has, or they lost a whole hour of sleep because their spouse refused to get up to help. I look around me and I think of the times I wished I had someone in the house to help, or how a cold would be such a blessing in comparison to what my child is struggling with. There are days I don’t even get to change from my pajamas before 5pm, let alone  have a moment to myself to even think about the last time I sat down to eat.

I am also starting to understand why they say some marriages and relationships don’t survive the struggles people face when a child becomes ill. It’s taken a toll on friendships and relationships in my life. Just when I think I can catch my breath, I spend an hour in the doctors office, or the ER, or with a specialist, and I am right back in crisis mode all over again. I ride this constant wave. Some days I just want to turn my phone off, and ignore everyone so I can catch my breath. Some days I just feel incapable of giving to others outside of the boys. That includes myself.

I am not sure when I will finally be able to sleep a full night without waking up to look at Gabriel to make sure he is still breathing, again. I am not sure when I will be able to wear mascara again to a doctors appointment, or when this wave will crest and then crash. I have no idea. I have no idea about anything anymore. I do know that I am beyond thankful for my children, I am beyond thankful for the people who love me. I also know that I am working through so much and I need understanding from those around me as I rise and fall over and over again. I need to be selfish right now. If that is even what it is called. Is it selfish to want to just not think for a day? I don’t know. If it is, I need it. I am not ignorant to the things relationships in our lives to survive. But I also know life brings highs and lows and seasons are not always equal. What we put out isn’t always what we are going to get in return, because life in all of it’s idealistic simplicity, just doesn’t work that way. Sometimes we need to be the stronger one for the other. Sometimes we need to be the cheerleaders. Life is not this perfect balance. I wish it was, but for all the self motivational memes on Facebook of idealistic quotes, it just isn’t. It’s impossible to explain to those around me who have never had a child with an illness. But even then, pain is all relative to our life, right?

In the medium, I would like to say that if you are reading this and you have a little one at home with a cold that has kept you awake all night, know that there are some parents out there tonight who would give anything to be in your place with their own child. If the worst thing that happened to you today is that someone cut you off in traffic and you forgot to get peanut butter at the store, be thankful. If you know someone going through a tough time, be there … unconditionally. For all the things you are feeling, you have no idea what it is like to be where they are. They might appreciate that smile on your face more than you realize, even if they look back at you with tears in their eyes.

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.