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Posts Tagged ‘heart’

My Big Fat Life – What? Me Worry?

In Uncategorized on December 9, 2015 at 9:57 pm

Dear People Who Love Me and Who I Love,

Yesterday I had read an article about a new treatment for children like Gabe. A medication that physicians were prescribing to people with pericarditis, that was showing promise. It isn’t a cure, there is no real cure, just a treatment that is proving to keep a flare at bay.

Of course I wrote his medication specialist right away, and asked the nurse to please speak to the Dr. about Gabriel being a candidate for this treatment. I was disappointed when she responded that she had spoken to the Dr. and he felt Gabriel wasn’t a good candidate for this treatment, because it’s a daily injection, and Gabriel already has severe anxiety surrounding needles. Just to get a blood draw requires sedation, and even then sometimes it takes three of us consoling him as he moves through the process. It’s heartbreaking to watch.

I responded back the nurse and asked her if she could then ask the Dr.  if he really felt that the procedure to remove the sac of his heart was truly the end of our road and if possibly there was any other medication we could try.. anything. Instead of responding through email, a few hours later the nurse called me. She pointed out the obvious, that I sounded anxious in my email and she was wondering if I was getting scared about the procedure. I told her that yes, I am. I need to know without a doubt that we have exhausted all other possibilities, all other options, all other chances that we might be missing something that could help avoid this surgery. I want Gabriel healthy, I want him to have a wonderful life, and know what it is like to get old. I just don’t want to have to put him through such a big deal, if there is something out there that can help him achieve all those things I want for him. I asked the nurse if she could please have the Dr. call me back and just assure me that we are doing the right thing. She said she would pass my request along.

Hours passed and I was forced to make a store run because while people in my house like to use toilet paper, letting me know we are out of it is somehow a telepathic message that I just keep failing to receive. While I was standing in line, the Dr. finally called to talk to me. I explained to him that yes, I am getting nervous and I just need to hear from him that this is exactly what needs to happen. I told him I would never be able to live with myself if something happened to my son during surgery and not checked every option, every possibility to know that I did everything I could to advocate for the right thing for Gabriel. The Dr. told me that there were medications they could try, but he feels it’s just putting off what needs to happen, because in the long run Gabriel is going to need it and if we do it now, we avoid his condition worsening and making the surgery to remove the sac adhered to his heart that much more difficult. As he spoke, I knew what he was saying was right. I think I just needed to hear it once more before we move forward.

I told him that I just needed to hear it once more before he goes into surgery, and then he said something that caused an involuntary noise that emerged from my mouth and my heart. A noise that caused people to turn their heads and look at me while I tried to speak through the tears that were now freely flowing in front of everyone and their dog in an instant. He said “He’s going to be okay, I promise.” I could barely keep myself together as I tried to talk through the pain and the tears as I responded “You can’t promise that.”

Often  the words “He’s going to be okay” are offered as words of comfort. I hear your feeling of a loss for words when you say it, and love you for wanting to find words to say that might offer a moment of comfort and peace in an otherwise shit situation, yet the ending emotion is anything but peace. I’m his Mom and I don’t know he’s going to be okay. It really hasn’t been “okay” for a little over two years now, and none of this feels okay because I don’t know how it’s going to play out. So far nothing has gone according to game plan. If knew he was going to be okay, imagine all the peace I could be walking in right now.

But I don’t know; none of us do.

While I was putting my groceries into the backseat of my car, and still talking to the Dr. on the phone, a checker made her way over the parking lot. I was whispering to myself “please don’t let her come over to me, please don’t let her come over to me” as my eyes followed her path of intention right up to me. I mouthed the words “can I help you?”  and she responded that she just wanted me to know that she was going to pray for my son. I quietly gave her a hug because while I was embarrassed by my public display of reaction, it meant a lot me and in the moment it was exactly what I needed. Not a promise that things were going to be okay, but just a quiet reassurance that I wasn’t standing alone in the moment. It’s not something I easily allow myself to share with people, yet it’s something I have been really blessed to know in my life the past 5 months. The amazing guy I’m dating has this way of holding me in his arms, or taking my hand, and I feel safe even though I am uncertain of what’s going to happen. I’m not accustomed to feeling safe with someone, and it’s wonderful.

I love you, my friends. I am so thankful that you have shared in the journey of my life the past 5 years. I consider you a part of this, and I know from the love you have openly extended to my family that you feel a part of it too. You’ve been such an encouragement at times, and when things have hit hard, you have encouraged my heart to hit back harder. It’s because I know you care that I ask you with all the grace I can, to please stop telling me it’s going to be okay. It’s breaking my heart, and I know that is the last thing you want. I know that isn’t your intent, but in that moment knowing it and feeling it are two different things, and I don’t always know how to let logic win first place when I am hurting.

I hope this made sense, and you know that I love you.

L

 

 

 

 

 

 

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My Big Fat Life – It Came In On a Dark Horse Comic

In Uncategorized on May 7, 2014 at 4:27 pm

Gabriel, he started a new taper to his prednisone yesterday (the Dr. had him do it a day late, since we typically do it on a Monday) and he is holding on this dose until he sees the Dr. again on the 12th. Other than some random pains that haven’t amounted to anything, he seems to be tolerating the taper pretty well, though the taper has never been the problem. It’s when he goes off the prednisone completely, that we seem to run into trouble.

This first week of May was pretty busy. On the 1rst, Dark Horse Comics made a special allowance, and invited Gabriel into their offices for a private tour. He and his brothers got to sit at the conference table, where some pretty cool things happen in the world of graphic novels and comic books. They were given a demonstration on how the art comes to life, and given some of the coolest goodie bags afterwards. Right before they left the conference room though, Aub (PR guy) let Gabriel keep a copy of the graphic R.I.P.D. which was displayed on the wall of the conference room. Since this is one of Gabriel’s favorite movies, he was pretty stoked. I hadn’t heard him let out a victory whoop like that, in months. Aub was pretty much my personal hero that day.

I don’t typically post things I have written prior to posting, because everything I post is something I am writing I the moment. However, I wanted to share something I wrote on April 30th, knowing that May is going to be the month we most likely find out if the Colchicine works. As the time draws closer, I panic a little more and try to find the good in all I can, in the moment.

April 30th 2014
It’s 2:38am. I’m exhausted, and quite possibly too tired to sleep. I’m sitting on my kitchen table, with the patio door open, and listening to the wind gently blow against the leaves like a perfectly written symphony. Boys and dog sleeping, the faint lights of planes as they fly over, and me. Just me. It was just me and a spoonful of whipped cream, but that’s done, and now it’s just me and a naked spoon. If I believed time could give hugs, this is what I imagine it would feel like. If I believed time could kick ass, April is what I imgine it would it bruise like. But if time truly does heal, then the future is what I hope it looks like. #Peace #Hope #BuyMoreWhippedCreamLaterToday

One week down.

(Gabriel sitting at the conference table at Dark Horse Comics 5/1/2014)

Dark Horse

 

 

 

 

 

My Big Fat Life – Isaac Bear

In Uncategorized on April 19, 2014 at 10:29 pm

I wanted to take a moment and explain the red bear that often appears in the photos of Gabriel. The bear is Isaac Bear.

As many already know, Gabriel had an identical twin bother, Isaac. When I was 20 weeks pregnant, it was discovered through ultrasound that I had twins. During that ultrasound, they also told me that Isaac was not alive, though they were essentially connected by one umbilical cord and Gabriel’s heart worked for both of them. I carried Isaac to term with Gabriel, since they were in their own sacs. After birth, Gabriel was in the NICU but was released after 10 days later, with a clean bill of health, according to the doctors. Of course, we would find out that wasn’t the case, after all.

A couple of years ago, Gabriel was really having a hard time sleeping. I took him to the doctor and after recommendations, I tried melatonin and a sleeping aide. Nothing seemed to work. He really struggled to fall asleep, and stay asleep. One day I was looking for some things, and came across Isaacs box. The box holds photos, and things from his funeral, that I have kept. Dried flowers, the program, and things like that. I had brought the box out and shared it with Gabriel for the first time. When we went through the box, he came across the red bear. I had bought the bear originally, as a Christmas ornament to hang on the tree, in a way to keep Isaac with us. Gabriel asked if he could have the bear, and of course I said yes. I kid you not, that night Gabriel slept through the night, as Isaac Bear sat on his bed. Ever since, Gabriel has never struggled with insomnia, the way he struggled with it prior. Now Isaac Bear follows when comfort is needed. Gabriel has told me that in a way it helps him feel like his twin is close by, and that somehow gives him a sense of comfort. I am very thankful for that bear, and the connection to Isaac that it brings for Gabriel. Anything that gives Gabriel a sense of comfort, especially now, rocks my world. I love that bear.

I will share more about Isaac another time, but for tonight I just wanted to write about the bear.

(Gabriel with Isaac Bear in ICU shortly after his open heart surgery, 8/8/2013)

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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)

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My Big Fat Life – Gabriel and His MRI Results

In Uncategorized on April 8, 2014 at 5:30 pm

I got the call tonight. I will spare you the round about details and lack of planning (or even that the cardiologist yawned during the conversation), and get right to the point.

The pericardium sac is thick and stuck to places on Gabriels heart. What does this mean? Well, as it was explained to me, the sac gets thick and starts to adhere to the heart, much like a spider web. That is not supposed to happen, and this is what is happening to Gabriel. I am calling his regular Cardiologist tomorrow to set up a game plan, and speak to the Rheumatologist to discuss medications. There is one, Colchicine, that might help. If it doesn’t, and the sac gets even thicker and adheres more to the heart, then they will have to operate and remove the sac from his heart.

The cardiologist that I spoke to tonight, is the one who did the MRI and I’m not a huge fan. Up until recently, he has questioned every time I have taken Gabriel in, as to whether or not Gabriel is even having problems. I am hoping the MRI has now convinced him that Gabriel is indeed not well, and now we need to get super proactive to figure out what to do from this point.

So… here were a few of my questions for him tonight, followed by his answers:

Will the medication unstick the portion of the heart that is already adhered? He doesn’t think so.
Will it adhere more? Possibly.
Can the sac completely adhere to the heart and constrict it? Yes.
What will they be doing to monitor his progress? Just wait to see if the medication helps and prevent another relapse.
Will they know if it’s adhering to the heart more, based on symptoms? No.
So then why won’t you be doing a test to keep a check on things? (No definite answer given).
Why did his ANA levels test positive? (This can indicate Lupus) Not sure, it can mean a lot of different disorders so we need to talk to the Rheumatologist.
Have you talked to the Rheumatologist? No.

Can anyone else see my frustration? Tomorrow, I will be speaking to his Cardiologist and hopefully get a game plan going. I also plan on making some calls to other children’s hospitals to see if they have any experience in this condition. I’ve got to make sure I am not leaving any stones unturned, in trying to find answers to help my son.

On a better note, I feel much more grounded today after having a mental day yesterday. I am taking everything one step at a time, and choosing to address the things I can do something about, and let go of the shit I can’t. I am in a much better frame of mine today, to do just that. You would think with this news, I would be in a much worse place than I was yesterday, but I can’t help but feel that at least we have answers, even if we don’t know why it’s happening to him. At least we know what the result is, and can address it sooner than later. That perspective makes me feel better, and that is what I am trying to hold to.

(Gabriel while waiting for his MRI yesterday)

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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 Life – Life

In Uncategorized on October 26, 2013 at 7:57 pm

Dear Life,

I would really appreciate it if you would just slow your shit down for a moment, and let’s take this one situation at a time, okay?

Sincerely,

Someone who really is only one person

I don’t know if life got that memo, but it’s ignoring me if it did.

There is so much going on. I don’t even know where to start.

G:  He took the last of his medication recently, and we are waiting to see the cardiologist for a follow up echocardiogram. I am holding to love right now, and believing that this last round of medications is all he needed to get past the healing process.

It’s really forever changed my life, having G get so sick after his operation. It forever changed me, just seeing my son in ICU and just watching go through the healing process. In some ways it has changed me for the better, and I am certain there are people who will tell you it has also changed me in ways that they don’t like. For one, I am emotionally over spent a lot of the time. Most of my time is trying to manage the day to day concerns I have, and still trying to find that coveted time to myself that everyone tells me to take, but no one likes when I do. I don’t mind that I don’t really have time to myself. Children grow way too fast, and heaven knows I am so happy I have those babies in my life. Some time to decompress and not always being on heightened alert, would help though. Maybe some time to just listen to my thoughts and work through them, than always trying to drown them out because I feel so overwhelmed the moment my mind starts talking. Yeah, that would be a really nice thing.

Then there is the Avonte Oquendo case. Can we say terrifying? I can’t tell you how many times I have gone to the news to check for updates and see how things are going. It’s not that he is just a missing child, he is a missing child with Autism. I have a child with Autism. It’s a terrifying thought that any of our children be in a place they can’t fend for themselves. My heart goes out to his family, and I want him found yesterday. Weeks ago. Moments within him running out of that school.

Things at my sons school isn’t going so well, and it’s come to my attention they aren’t following his IEP again. Not really a big surprise, yet now they are violating it in ways that put his safety in jeopardy. I am not even sure which way to turn to get things taken care of, yet I can’t ignore it. I won’t ignore it. I need to make as many calls on Monday as I possibly can, and hopefully someone can help. If there is no one, I may have to start looking at homeschooling my son. It is something I am prepared to consider and ready to do, but I would really prefer to have him have access to the services he has a right to. I want him to grow and learn in a setting that helps him socialize and develop life skills to help him through his life. Yet if the school can’t keep him safe, I don’t have a choice.

I can’t afford an attorney, before anyone suggests. It’s sad, that it costs so much money just to advocate and have people do the right thing.

I feel disjointed somehow. I can’t even put a finger on it. Maybe it is because I feel like I am being pulled in a million different directions and I only have two hands. Sometimes I have to vision a pile of laundry sitting in the middle of my room, and the only way I can start to fold it, is to begin with the shirt on the top. I am trying to list the things of great importance, yet they are all things of great importance. Instead I try to count my blessings, because there are so many. I know there are. I have so much to be thankful for, they aren’t cancelled out by the fires I need to put out. I would just love to put a fire out and have not sit and smolder, just waiting to start burning again the moment I get the next one under control.

Perhaps this is just life, and I know it’s no different for me than it is for others. I just need to feel like I am getting a handle on things, before another things comes along. I was really thrown off when I heard Gabriel needed surgery, and I haven’t been able to find my balance since. Just writing this all out feels scattered, yet I know I writing it out helps. It is supposed to help. Okay, it does help.

In lighter news, as I write this, I look down and I see a toy giraffe that the boys used paper towels and tape to make a set of pajamas for. It’s things like this, that make me smile and feel full of hope. A simple act of childhood that they will most likely not recall when they are 24, and the fact they are just so funny and full of imagination, inspires me.

I am not sure how to end the blog tonight. It’s just such a rambling mess that I should probably leave it as awkward as I came into it.

Narf.

My Big Fat Life – Gabriel Update

In Uncategorized on October 6, 2013 at 12:14 am

Well, I had been working on a blog that was going to be about how great things have been or Gabriel. But then he got sick. Two bouts of pneumonia and on his second battle against postpericardiotomy(syndrome) inflammation currently, I wish I had a much better update.

I’ve spent fat too many nights in the ER with Gabriel and his brothers, and see the pediatrician far more than I would care to. Yet I have to say that I am touched by the calls from the pediatrician to check in on Gabriel, and the ER staff has been amazing even though I am sure they could do without seeing me as much, as well. The boys have been amazing and supportive of their brother during our middle-of-the-night ER trips that turn into seeing the light of morning, before we get any answers as to why Gabriel seems to be struggling so much.

I am not sure we even have answers, all I know it is really hard to see my kiddo in so much pain when the symptoms begin. The fevers, the pain, the tears that come with pleads to give him something to make the pain stop so he can sleep….. it’s really hard. He is such a beautiful person, and it hurts that someone so young and so cool, should have to deal with anything outside of typical teenage angst. I wish his only complaint was about chores, and homework. I want that for him.

He’s only been to school two days this year so far, and the district has finally approved in home tutoring for him, until he heals enough to try and go back for as long as he can tolerate in a day. For a teen who is really social and loves school, this isn’t an easy thing to look forward to. Today the first candidate for tutoring called me to tell me she wanted to only come twice a week, for 2 1/2 days and I had to tell her that I didn’t think he would be able to handle that much one on one tutoring right now. She seemed to have a pretty big personality and want to keep pushing the matter, but I pushed back and told her she needed to call the school and let them know she couldn’t do it. I need him to be tutored to help prepare him for his return to school, but I also need to keep my home as peaceful and centered as possible.

In the midst of this, I have had a lot of time to think while standing around rooms. One of the things I have been thinking about is the title of my blog. I am feeling less like I need to talk about my big fat lesbian life, and just stick to my life. I am a woman who happens to have a life. Of course I may be over thinking it all right now, or not thinking clearly enough. When my kiddo feels better and I get a full nights sleep again, I will tell you.

That brings me to this.. I am really worried about my kiddo. Just when he starts to feel better, he gets sick again. It seems to be within a two day period. The cardiologist said to me yesterday that he doesn’t know why Gabriel seems to have such “bad luck” with this, and I don’t know either. All I know is that a surgery that was supposed to save his life, has him battling illness, and I really want to see my son who was so full of life and energy. I want to see the color in his cheeks, and watch him run around because it’s impossible for him to stand still longer than half a second.

I don’t know if you are the praying kind, but if you are, please lift my family up in prayer. Gabriel needs complete healing, total healing, immense healing, pure healing… all the healing you can imagine. Gabriel needs it. His brothers, who have been amazing, need peace and worry to be far removed. It’s been difficult for them to watch their brother go through all of this, and watch him hurt with fear when they need to do blood work. I’m working on keeping my mind and heart full of peace, so that the boys can see that and not worry so much. But of course I do worry, and it is hard to see my son struggling so much. It’s nothing any parent wants for their child to have to deal with. It’s not anything the parenting books prepare us for.

I need to head get him up for his next round of medications, and then I need to try and get some sleep myself. Thank you all so much for listening, and thank you for the love and support. It really means a lot… it really does.

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.