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Posts Tagged ‘CHD’

My Big Fat Life (My Big Fat Lesbian Divorce) – Overcoming Hallways

In Uncategorized on April 17, 2018 at 8:44 am

Back in 2014 I wrote about how I seemed to cry a lot in the hallway of a Drs. office when G was really sick https://lesbianspaghetti.wordpress.com/2014/03/27/my-big-fat-life-hallways/ As you may remember, my son G was diagnosed with Anomalous Left Heart Coronary in the summer of 2013 when he went in a for an echo completely unrelated to his heart. It was then I was told he could have a massive heart attack at any time, and could die. I was given this information in the hallway of the hospital , by the same cardiologist who told me a few times before that his heart was fine and I was worrying too much. I recall having my back against the wall, and just sliding down to the floor where I sat and cried for what seemed like an eternity. It’s not easy hearing your child could die at any time, and given my history with G, I still wasn’t prepared for the news that was working its way from my ears into my head.

G is the surviving twin of a complicated pregnancy. G & I suffered from Twin to Twin Transfusion, but the more complicated syndrome of an already complicated syndrome, called Twin Reversed Arterial Perfusion. I had already went through the pregnancy with a child who couldn’t thrive, and every day lived in fear that somehow G’s heart would give up and I would lose him as well.

After birth I fretted often and was told his heart had somehow rectified itself and I have nothing to worry about. Of course through the years I sensed something was wrong, and I pushed for them to check his heart a few times just to reassure me. I was told after his last one around the age of 6 not to bring him back because he was totally fine, so I tried to let go of this nagging feeling that things weren’t and dismissed it as perhaps I was just living some constant PTSD from the pregnancy. He had the echo that day in 2013 because his genetic specialist was trying to figure out why G wasn’t growing properly, and it was the eyes of an ultrasound tech who saw what the Cardiologist kept missing. The same Dr who told me not to bring my son back at the age of 6 was now the same Dr delivering the news to me in the hallway that my son could die at any given time. God, that man is an asshole.

After his initial CHD repair in 2013, G immediately developed a condition that is basically surgically induced Pericarditis (Postpericardiotomy Syndrome). He was sent home with Lasix and Prednisone, but just couldn’t seem to shake the constant build up of fluid around his heart. That sent us on a long journey of several trips to the Dr, ER and specialists who worked to control the fluid with Prednisone and other drugs, while not even sure what was going on. The medications worked at first,  and the fluid would disappear, but after time it just stopped. Before I knew it I was back in a hallway with a Dr telling me that G was sick, and the pills weren’t working. I cried a lot in those hallways, because the last thing I needed the kids to see was me losing my cool and breaking down in the exam rooms, though I am sure they knew what was going on.

Over time it became clear that his heart was not well, and they needed to do remove the entire sac of his heart. When it was opened to repair his heart initially, it became like scar tissue and the cause for the inflammation which made my son very, very ill. The Prednisone stopped working to control the fluid from building up, and I knew we were out of options. His only chance at getting better was to have that surgery, and god I was scared as hell.

I was absolutely terrified of them opening him up again, and heaven knows I was left standing in a hallway crying my eyes out, terrified it wouldn’t work, or worse… what if something went wrong during the surgery?  The heart isn’t like an organ you can go without, and up until this point I had seen this child go through so many weird and obscure events from his time of conception up until now. I was feeling pretty hopeless that something might actually work.

G had that surgery the last week of December of 2015, and as we spent Christmas and New Years in the hospital, it seemed things might have worked. By the time he left the hospital there was no unusual build up of fluid around his heart, and over the next month or so he was weaned from his nearly 60mg of Prednisone a day. By February he was completely Prednisone free and I started to catch my breath regarding his heart. He started to lose all of that weight that comes with taking such high doses of steroids and eventually started to look like himself again.

So when G called me from school a month or so ago to tell me his chest and jaw was hurting after running at school, I took a breath in and told him to take it easy and immediately placed a call to his cardiologist (not the same cardiologist who missed his heart defect and later broke the news to me in the hallway, because that clown wasn’t touching my kid. I found the best, most experienced cardiologist I could after that), and they decided to schedule him for an angiogram which took place this month. I guess when children have this type of repair, as they grow and their heart does, it can cause some complications with the scar tissue and they have to widen the space created to let the coronary thrive without being constricted by the heart when it works a bit harder when they are active. So in my mind I was worried this is what could be going on. After all, G had a delayed growth going on since most of this happened at the time when most kids start growing, but his growth was delayed a bit because of the steroids.

As we made the trip back to the very children’s hospital where G had his previous two heart surgeries, they led me down to the same rooms we waited previously for the surgeons to come and wheel my son to the operating room. I wasn’t exactly prepared for that, because for some reason I thought a day procedure would be in a different area, but there I stood in the same hallway I had cried before. I stood there for a moment, as if I was looking into a parallel universe and wondered if I ever realized in those moments I would standing there in a space beyond that with my child. Probably not, but future me wanted to reassure past me that things were going to be okay, but in all honesty I was back in the hallway scared.

G went back for his angiogram and I was moved to a waiting area I hadn’t seen before. It was slightly nice to be placed in a new space, because I wasn’t sure I could go back to those rooms where I sat almost paralyzed in fear until the surgeon walked through the door. In this room family members sifted through the door from time to time, and I didn’t feel so alone in the worry of knowing someone you love is in the back room with a Dr running a probe up to the heart to check things out. I was able to move about the hospital this time and not be too far from the new waiting area, and this time they handed me a pager to let me know when the Dr would come and talk to me, so that helped me my mind a bit distracted this time.

When I got the page and the Dr finally came into the waiting room, I held my breath a little. I guess I have learned to brace myself for bad news, and have become an expert at moving from calm to crisis mode in 1 flat second.  Instead I got wonderful news; G’s heart is fine. They suspect the pain is from scar tissue and nerves starting to get some feeling back. At first I was trying to absorb what I was hearing. I was almost waiting for the “but”, and it didn’t come. Instead what I got was likely the first wonderful test report he has had in a very long time, and it took me a moment to get what I was hearing. He went on to say G won’t have to come back for anything other than a “Hey, how ya doin'” kinda thing. I don’t think it was until the Dr left the waiting room that it really hit me what he just said. G is fine. His heart is fine. He isn’t sick. His heart is fine.

As I sat there absorbing what he said, my fear was being slowly replaced by happy and it started to release. I have spent so much time getting bad news that to receive good news for a change seemed foreign to my body. I felt so strange with the happy coming over me I didn’t know what to do, so I walked into the hallway.

As I got up from my seat and turned the corner into the hallway, everything just poured out of me. All the fears, all of the experiences, all of the stress, all of the moments I felt as if I was standing still just released from me as this joy was filling all of the empty spaces it was leaving. I stood there leaning against the wall just sobbing, and it was the most cleansing cry I had in a very long time.

As I started to come down a little I turned my back to the wall and leaned against the wall instead of slowly descending down in a haze of tears to sit on the floor and cry as I did on the day I first heard the news he needed open heart surgery to save his life. Instead I  glanced up and wondered how many people were standing in a hallway somewhere in the hospital at that moment and receiving bad news as I have so many times before. For a moment I felt for them, and my heart knew that place all to well. I wanted for them to being hearing good things someday as I was at that moment, and hope it was in their future too. I know that when I stood in those hallways I never could move past that moment and invest in a hope for a future, because things never seemed to take 2 steps forward without moving 20 back, but I can only hope someday they can stand in a hallway and release the emotional exhaustion as the joyful hope starts to slowly take up residence again. I want that for them. I want that for me, and most of all I want that for G.

I know so many people say that you have to believe that the best possible outcome will happen in order to see good things come to pass, but I can’t tell you how many times I hoped for the good only to feel like my hope was being smashed like a tin can against the pavement when it crashed. After awhile you start to detest hope and feel like hope is nothing but a 4 lettered word while others seem to bask in all things wonderful. You start to question your faith, and if you are not careful bitterness can set in. I wish I can say I wasn’t angry at God or the world, when I found out that I was facing such a difficult pregnancy. I was really angry at the time, because I was hurting so much. I didn’t understand why I was walking around with both life and death in my body and why my surviving twin was having to struggle so much before even making his entrance into this world. You wonder why someone so young has to deal with so much crap, while those who seem to continue to live lives that don’t contribute to the good of others, just seemingly glide.. but you can’t be there. You can let that thought fly through you, but don’t grab onto it. I had to focus on the present before me and the fact is that G has changed my life in so many positive ways even though I have stood in some tough times. He is caring towards others, has a gentle loving soul, and genuine. Even if the crappy humans seem to glide through life, G is making a difference for good. A ripple starts somewhere.

As you may recall G also started having seizures shortly after his initial surgery in 2013, and it was then it was discovered he has Epilepsy. They think he has always had it, but somehow the initial repair “brought it to surface”. The good thing is as of today his medications are controlling the seizures and that is awesome. An overnight study showed he has active seizure activity when he sleeps, but so far the new medication he is on is controlling them from manifesting. That is a very good thing, but omg I do wish this kid could catch a break with his health and never have to worry about crap a kid his age typically doesn’t have to think about. But for now, we are taking all the good we can, and thankful that people live every day with Epilepsy and do just fine. That is what I am holding close for him.

G is now one down by one specialist and that much closer to just having a life outside of exam rooms, and me outside of hallways.

 

 

 

 

 

 

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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

 

 

 

 

 

 

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.

 

 

 

My Big Fat Life – Jesus Take The Wheel (but let me press the gas pedal)

In Uncategorized on October 14, 2014 at 9:43 pm

Gabriel had another seizure the weekend before last. It was one of those grand mal seizures, and scared the crap out of me. This makes three now.

The second seizure he had was something called a “partial”, and it was after that the Dr ordered an EEG. The day before he had this last one he had the EEG done at the hospital he was transferred to, so the ER Dr. was able to speak to the neurologist, who spoke to someone who then spoke to the neurologist, when then spoke to he ER Dr., who then spoke to me. Yeah, I know.. confusing, isn’t it?

The initial impression they have from the EEG is the same one the neurologist spoke to me about when we met her for the first time, last week. Gabriel has Benign Rolandic Epilepsy. He may outgrow it, but the onset of it has come a bit later than usual, so it all really remains to be seen. He will stay on medications for 2 years, and they will do another EEG to see what that looks like. If it’s clear, then he will go off the medication.

From what I have read, the children don’t typically need medication, but because he has had so many in such a short amount of time, they put him on it.

So now we have answers.. more answers. It’s been a bit overwhelming at times, and I have gone back to spending time with tears. I have learned to be a heart parent this past year, and now I need to learn how to see a grand mal seizure without freaking out, but all in all I remain greatly blessed. I do wish that my Gabriel could just have a time where life wasn’t throwing something new out at him, and he could focus more on the things teens worry about instead of worrying about having something happen.

Anyways, I kinda feel like I am telling God to take the wheel, but keeping my foot on the gas pedal trying to control the speed of things where I want them to be. I know I can only do what I can, but it sure would be nice to feel I have some control in this situation where I feel helpless at times.

 

 

 

My Big Fat Life – Throwback Thursday (365 days later)

In Uncategorized on June 26, 2014 at 5:23 pm

A year ago today I stood in the hallway at OHSU right outside the door of the ultrasound room, and cried as I listened to a cardiologist tell me that Gabriel needed to have life saving open heart surgery. These were the same halls I walked when I was visiting Gabriel in the NICU after his birth, and the same halls I walked when I was leaving the hospital with a little boy that I was told was in perfect health with a perfect heart. Even though I had my suspicions over the years that there was something going on with Gabe, nothing prepared me for that moment and those words.

Here we are 365 days later, and I never would have guessed that life would be so much different than where I thought it was that day that I made the drive to the hospital for routine tests for the boys. In some ways the changes are very disappointing and in other ways, life is much better.

I was going to write a list of the changes that transpired over the year, but recently my sweet friend Jessica posted something on Facebook that resonated with me so much, that I wanted to share the list of things she has learned this past year (with her permission):

1. People who actually care will make a way to be there for you when you need them.

2. People have different definitions of help.

3. People have different definitions of friendship. Just because you know what kind of friend you are to someone doesn’t necessarily mean they will be that kind of friend to you.

4. Ultimately, you don’t owe anyone any explanations for your living, romantic or self decisions (unless you are hurting someone).

5. My mother will always be there despite how she feels about whatever is going on… good or bad, or indifferent.

6. You know the answers in your spirit; we seek others for confirmation.

7. If when something goes on in your life and you pick up the phone to tell someone, the first person you think/want to tell is and should be your best friend or partner (if this isn’t the same person) . If you find yourself telling someone something and they aren’t the first person you thought to share your thoughts or happenings with, reconsider who you’re sharing with. Everyone isn’t meant to know everything.

8. If you are in a bind and you need help, the first person you know who will come through when you call is your family.

9. After all is said and done, whoever is left is your true friend. I fight very hard for my friendships/relationships. Fight for people who will actually fight for you and don’t be surprised when you find out people you thought were going to won’t. I’m learning who actually fits into that “friend” category. And although it sucks, it is definitely an eye opener.

10. MOST IMPORTANT LESSON OF ALL: You can’t expect anything from anyone. So… make your own life filled with happiness and joy the best way you can. You will meet amazing people along the way; know when to hold on and when to let go.

While I can’t really relate to #5 and I am not really into fighting to keep relationships intact this past year (I have had to keep my battles soft), this list really hit home with me. Especially #2 and #3. Besides these lessons, I have also learned that hope can be an enemy if not used with caution and that hugs (for someone who is not normally affectionate with strangers) are essential.

A year ago I never would have thought that some people who were in my life then, would not be a part of it now. Some of those relationships were redefined, and I am grateful for the preservation of those connections. I do miss friendships that fell by the wayside, but I am very thankful for the new friendships I made this year, with people I wouldn’t have met otherwise. I have met other heart parents along the way, and also Wendy who is a heart patient herself (she is a kindered spirit in the realm of parenting, and she makes me laugh on a consistent basis). These people have made me feel as though I can lose my shit in a place that is understood, even if our experiences are all different. I am especially grateful for a friendship that came from the most unexpected place with perfectly imperfect timing, how it’s evolved, and how now Omar has come to be amongst the most cherished people in my life.

Life hasn’t carried me where I thought it would. It certainly has changed in the last 365 days. In some ways the changes have been really disappointing, and in some ways life is so much better.  The best thing of all is that as I write this, Gabriel is playing a video game with his brother and I can hear the debate about the game take place. A year ago I was terrified that might not be the case.

Still not sure where the next year will lead us; I’m not even sure what tomorrow has in store (other than a soccer lesson). I do know that I am grateful for each and every one of you who have read my words, written me letters of encouragement, loved me despite my often bouts of frustration with this journey, and given me space when I needed it with the understanding that you would always be there when I was ready to talk. Your loving and patient friendship has meant a lot to me.

My wish for the next 365 days is for healing, love, and victories. I wish that for all of us.

 

(I snapped this photo of Gabriel on June 26th 2013, while he was being prepped to have the echo that would prove to be both life saving and life changing)

Gabriel June 26 2013_copy

 

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 – Gabriel’s Treatment Plan

In Uncategorized on April 16, 2014 at 3:51 pm

I finally got a call today. As you know, the cardiologist brought the rheumatologist onboard, so that he could manage Gabriel’s medications to help with the PPS (Postpericardiotonomy Sydrome) flares. Since PPS is really the same as Percarditis, only caused by surgery, the rheumatologist manages those medications with more knowledge than the cardiologist.

The rheumatologist told me that they have decided to prescribe the Colchicine, and give it a try, starting tomorrow. He is sitting in conference with all of the cardiologists tomorrow to discuss what happens if the medication doesn’t work, but today Gabriel’s cardiologist and the rheumatologist agreed that the very next step will be surgery to remove the pericardium, if the Colchicine doesn’t work. I realize I haven’t explained much about the Colchicine, but I think I will explain that in the next entry. It’s an interesting drug that recently had a study published in the NEJM.

The rheumatologist also explained that the initial ANA testing that came back, was screened further, and tested completely negative for Lupus, so that is a real positive. His vitamin D was extremely low (an 8), and his liver tests show a slight increase in his numbers. He has gained 30 pounds since his surgery, all due to the prednisone, no doubt.

I am so ready for my son to be healthy again. I desperately want this medication to work. I just don’t want him to have to face surgery again. Yet I know that if that is what it takes to have Gabriel feel better again, then that is what they have to do. I just want Gabriel to feel like himself, and not be ruled by all of the pains he feels when he has a flare.

So tomorrow is the day for the new drug, and here is hoping it is the key to help Gabriel feel good again. It’s one of those times you wish good thoughts really could magically touch a situation and be the pixie dust to transform everything it comes in contact with, to rainbows and all things beautiful and right in the world.

Thankfully, Gabriel is feeling good currently. At least the sound of the conversation currently taking place while I type this out, sounds as normal between siblings as it possibly can be. Gabriel is currently advising his brother Ben that maybe a getting a girlfriend would make him a nicer person.

Ben: “Why wouldn’t girls like me? I am hot.”

Gabriel: *fits of laughter

 

(Gabriel having his IV removed after the MRI scan last week)

Image

My Big Fat Life – Gabriels Heart

In Uncategorized on March 29, 2014 at 7:51 pm

The Cardiologist spoke with me the day before yesterday, and after speaking with the surgeon, they  have finally decided to do a CT Scan or an MRI on Gabriel, to take a closer look at things and make sure they aren’t missing anything. I am both happy they are finally doing this, and terrified they might find something that will require another surgery. They are supposed to call me Monday to schedule this, so I will be sure to write an update soon.

In considering that they might have to do another surgery, I go into an instant mode of fear. I am really struggling with the fear of having to watch my son go through that whole process again. It just makes me so sad for him. I am trying really hard not to borrow that worry, but I have to prepare myself for the possibility that this could happen.

 

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 – Mariah Carey Just Verbally Hugged Me

In Uncategorized on March 4, 2014 at 9:01 pm

This is my third attempt to write an entry. Each time I sit down to say something I just stop cold. I don’t know why it feels so vulnerable to write tonight, but it does.

Gabriel saw the cardiologist recently, and he says the repair is perfect. I guess it takes 6 months to be able to tell for certain, and Gabriel has passed that benchmark.

Today was his last dose of the prednisone. I am so happy yet so scared. I am happy that he has tolerated this long round, and has seemed to come off the taper well. The true test will be over the next few weeks. I am praying this goes without incident, and perhaps we are finally heading in the right direction.

I am holding to that hope with one hand, and completely terrified to let go of the security of this medication at the same time, with the other. It’s kept him healthy and I like having my son smile again. It’s so nice to see him full of life. It does my spirit such wonderful things. Yet tonight, right now in this very moment, I want to be held. I would love to be gently consoled that things are going to be okay. I’ve been fighting back the tears all day, because as much as I have been hoping for this day, I have been dreading it at the same time. It’s like letting go of the edge of the boat after being tossed from it, to see if  you can swim after all.

Maybe that is why I feel so vulnerable in writing tonight. I feel so naked at this moment. I feel stripped of certainty, and I need clothed with reassurance. But here I am on a Tuesday night, the boys in bed, and I am trying to find a way to pull it from within myself to just keep going on when I would rather throw myself on the couch, cover my head with a blanket, and demand that the world stop for just a moment until I get my reserve. If only blankets could hug, I think I would probably not emerge from my bed until the sun broke the morning.

So weird as I write this, the song Hero by Mariah Carey just came through my speakers. I’d like to think the timing of the song has meaning. I do not by any means think I am a hero of any sort, but the lyrics are a bit of a verbal hug and heaven knows I will take what I can tonight.