lesbianspaghetti

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.

 

 

 

 

 

 

Advertisements

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s

%d bloggers like this: