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Posts Tagged ‘Gabriel’

My Big Fat Life – Last Pill

In Uncategorized on June 12, 2014 at 1:07 pm

June 11th was supposed to be the last day of prednisone, but apparently I counted the days wrong, and it was this morning. This day has been a dreaded coming.

When I was putting his pills in his medication dispenser a few days a go, I started tearing up. The forced reality that this is it, really hit me. This is the last time the Doctors are putting Gabriel on prednisone as a treatment for his condition, and we are cautiously hoping the colchicine works.

Tomorrow marks the last day of school for him and his brothers, so I’m pushing the homework to get the boys finished. It’s been a really stressful week around here preparing for the end of school, and the end of Gabriel’s prednisone treatment. I am looking forward to school being over for a few months while we get Gabriel’s health sorted out. I was really hoping to do something fun for the kids after school released, but I have no clue what I can do that will keep us close to home just in case Gabriel gets sick again. I also need to start looking at the fact that I need to move. The boys and I have been cramped in this stupid apartment that the ex and I moved into as transitional housing until a home was purchased for us to live in, but we have outgrown it and honestly I would love to have a washer and dryer of my own, instead of using the laundry room. The money I am spending to live here and pay to do laundry, isn’t really putting my money to work to help a single parent who needs every penny possible, to feed 4 boys. If you are reading this and know of available housing, please feel free to email me. You can reach me at lesbian_spaghetti@yahoo.com.

So here we are, and here we go…

#FeelsLikeAWeekOfMonday

(Gabriel on the morning of surgery 8/8/2013 and 5/2014. Less than a year difference and you can see how prednisone and this illness has taken it’s toll)

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My Big Fat Life – Tomorrow Is When?

In Uncategorized on May 15, 2014 at 9:08 pm

A couple of days ago, Gabriel saw the Rheumatologist. As you know, he has been tapering the prednisone every Monday while taking the colchicine.

The plan is to continue the taper, with him going off the prednisone completely by June 11th. He will stay on the colchicine after he finishes the prednisone, with hopes that it will prevent another flare up of the Postpericardiotonomy, and there will be no fluid around his heart. He will stay on the colchicine with no definite ending date, until we see how it works. Typically he gets sick within 3 weeks of ending the prednisone, but we are hopeful the colchicine will prevent that from happening.

June 11th.

June 11th.

This day is set in my mind, and as it approaches I am cautiously hopeful yet preparing my spirit for what might lie ahead.

It’s hard to believe that it’s almost been a year since the heart defect was found. No one tells you how quickly time pushes past when you have a child who is chronically ill. I was thinking back to September when the Cardiologist suggested the surgery to remove the sac of the heart. He (the cardiologist) said to me “But that is way, way out there. We have medications to try first, and that is about a year out”. Yet here we are almost year later from his initial diagnosis, and it doesn’t feel like a year has passed by.

Maybe it is because I don’t even think in terms of making future plans anymore. Every thing is about the here, and now. Maybe that is why times seems to pass so quickly. When you make plans for events that are scheduled ahead, time seems to move so slowly. Now it is all about just making it through the day, and hopefully to the next one, without any events taking place that might indicate the medication isn’t working. In a way it’s been a good change, because I am learning to live in the moment. I’ve always been someone who spends a day scheduling and planning the next day. Sometimes I get so busy scheduling the next day, that I at the end of the day I realize I have spent my entire day preparing for the next. Now, I am learning to live right now. I can’t always do the things I want to do, I am not a rich woman in any sense of the means, but I am learning to appreciate the now. Don’t get me wrong, now that I am working with the kids with online school and the entire burden of daily responsibilities fall on me, I am staying busy no matter what. Just I am learning to embrace the moments where I can. If that is stopping and giving myself 60 seconds to pull my hair back and apply a dab of blush, then I do it. Buying tickets for a concert I really want to see that is months out? Not happening. Katy Perry is coming in September, and trust me, I wanted to go so bad. But not knowing where things are going to be in September, I couldn’t justify spending the money when times are already tough, and not knowing if I would have been able to go or not. But oh man, I would have loved to get a floor ticket and had one night I could just let go.

But here and now, things are okay. Gabriel is handling the taper well (even though that has never been the issue)and he is fine in this moment, and that is what it is all about. Wouldn’t trade that for all the Katy Perry tickets in the world.


 

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)

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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 -The Perks of Being Me

In Uncategorized on April 15, 2014 at 3:41 pm

I’ve been waiting for doctors to talk to each other, and decide what the game plan is, since last week. I have called every day, and at times I have even spoke to the doctors themselves, who promise me they will speak to each other, and then the next time we talk.. nothing.

Today I spoke to one of the cardiologists and made it clear that I am waiting for them to hurry up and get it together, so we can get Gabriel where he needs to be. I am giving it just a couple of more days, and then I am just showing up at their office and waiting to see someone. This is ridiculous.

In the meantime, I just feel the need to write today. It’s been a pretty busy few days, and throw in the fact that my phone landed in a puddle of water today, I think I am ready for a hug and some coffee. The upside today, is that Dark Horse Comics sent a package of graphic novels to the house, as a gift, and is giving us a private tour of the campus in a few weeks. I really appreciate the extension of kindness.

I was looking over my blog last night, and read the entries from 2012. I measured where I am now, compared to where I was then, and I feel like I have changed a lot as a person. Some of it holds pretty true, though 2012 seems to be the year that I had a lot of awakenings.

I also realized it’s now been three years since I started this blog. The anniversary of it all just escaped me. Life has just moved on that much. That is really exciting to me, considering there was a time I was scared I would never be able to feel whole again. I will admit there have been times I have considered tearing down this blog. I look back at the entries of 2011, and I am just so embarrassed that I was that sad over a relationship that was really nothing more than a disaster. But then I get an email from someone else who is in that place, where I was in 2011, and I remember how much it meant to me to know all those things I felt, and how isolating they were. I don’t want others to feel alone, and I hope they read past those entries and see that life does move on. I guess I just don’t want people to read it, and judge me on who I used to be. I want people to get to know me for who I have grown into. Especially when dating is in the picture. People have the advantage of reading my life, and that is really exposing.

So I thank those who have been reading my journey these past three years. I especially wanted to thank those who sent me texts, emails, and support when I recently revealed that I am interested in dating men, in my blog “I Learned”. I was terrified to write out that truth, but I knew I needed to.

In closing this, I wanted to share a quote from a movie I have playing in the background while writing this. “We accept the love we think we deserve.” – The Perks of Being A Wallflower. Take that for what it means to you. To me, it means staying true to those things I wrote in Jan. 2013. I hope whatever it means to you, it means that you find good things from, and for, yourself.

 

 

 

 

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 – 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 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.