lesbianspaghetti

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)

 

 

Advertisements
  1. There are no words……I am so sorry the medication has not been a permanent fix, yet. I am so sorry you have had to spend so many awful times in hallways. I am so sorry the answers are not there for the doctors, for Gabriel, or for you. I pray that a permanent solution will be found soon to keep that fluid away from his heart. Get what rest you can, when you can. Will be continuing to send all the good thoughts possible.

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 )

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s

%d bloggers like this: