Change of Plans

This is the longest hospital stay so far.

Everyone keeps complaining how hot it is. Id love to feel the heat, or the sunshine on my face, or the wind blow in my hair. Id love to breath in fresh air, not stale dry hospital air.

But, the truth is my son is in great hands. Being here is hard. Its lonely, very lonely!

Yesterday, we got news that we would go home tomorrow. Well tomorrow has turned to today and we have no end in site.

The past few days he has been weaned off oxygen and has done well during the day but then his stats dip at night so they put him back on it. This happened last night as well, and the doctors what to figure out why.

They say kids post Glenn are very stable, and hardly ever require oxygen. They think that he may have some fluid in his lungs so they upped his lasix and are going to see if that helps.

Its very frustrating hearing different things from different doctors.

Yesterday was hard. It was day 3 that Carson had not pooped. (Once you have a kid you become poop obsessed, and really pay attention to these things.) When he had pooped three days prior it was because of a sapository. So I was concerned and he was extremely uncomfortable. I asked for a sapository again and they gave him one which made him go right away, but it wasnt much. 10cc’s when weighed.

I asked if in a couple hours we could give him another and they said they would talk to the doctor. They tried to give him milacon, which was a joke. He barely takes a bottle of breastmilk, so he definitely wouldnt drink that nasty stuff mixed in non-flavored pedialyte.

They had to give it three hours to see if it would work. I knew it wouldnt, but they had to wait. I was so frustrated. They acted like they knew my baby better than I did. Finally the stupid three hours of suffering was over at 11:30 and after me getting pissed and arguing with them they gave him another sapository.

He fussed almost all night and he was doing that hold-your-breath-I’m-in-pain breathing, so of course that didn’t help his stats.

Yesterday the plan was that we would go home, he would have oxygen at home for when he needed it, and that we would have a follow up appointment to see how he was doing.

Today a new cardiologist came in, and said that he wanted Carson to go to the cath lab AGAIN. I sternly told him that all the doctors need to get their shit together.

I was so mad. Its like telling a little kid they are going to disneyland tomorrow but when tomorrow comes saying oh I was just kidding.

When the doctors did rounds today I went out and took part in it. I wanted to know what the plan was, if any. They said they were all going to get together and discuss things and then let me know.

Apparently, on Monday he will have another echo done, another bubble study done, and a GI scan (where they put a camera down his throat and look at the back of his heart.

Carson seems to test these doctors every step of the way. He has not been a typical case since he was diagnosed. They say its weird that the left side of his heart developed but his aorta didnt. It was also weird that his aorta kept narrowing, and now its weird that his stats arent stable.

So here we are, still in the hospital. It will be 3 weeks on Tuesday.

This is hard, its a test of everything. I am trying to be the best mom I know how, and the best girl friend I know how. Mine and Nicks relationship has gotten so much stronger because of this, but it has been tested. It’s so hard being here, with Carson alone. Sometimes I am resentful. Sometimes I wish I could go to work just to get away. But more than anything I am grateful. I am grateful that he is such an amazing dad. I didnt have a Dad growing up. He failed to be around, and my heart glows to see Nick with Carson. As soon as he walks through the door Carson stops what he is doing and just stares at his Daddy and smiles so big. I love it. Nick has been amazing. I am so grateful that he gets to go to work and support us financially while I get to be here 100% of the time with my baby and for that I am most grateful.


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