Monthly Archives: June 2012

Speak Up

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Those of you that know me know that I dont have a problem speaking up. I have always been one to say what I need to say. These days I have learned to filter my mouth a little more but regardless I still speak up when I feel the need.

This say has been so frustrating. The doctors have all been saying different things to me. I dont know who to believe. No one knows why Carson is requiring oxygen. Everyone has their “idea” and everyone seems to be making their own plan but not getting together to make a plan.

Since surgery Carson has gotten an x-ray almost every morning. Its to check for fluid in his lungs or any kind of swelling etc. 

He was supposed to get an x-ray Sunday morning as well, but I told them no. I didnt see the point. We were supposed to have been going home. 

When the surgeon came to talk to me he said they were going to do an upper GI on Monday that that was the plan and if anyone told me any different done believe them. 

So when x-ray came Sunday morning I sent them away. The nurses told me it wasnt a good idea. I woke up yesterday with it weighing on my mind. I was positive I didnt want him to have an x-ray. Why expose him to all that radiation if no decisions were going to be made till Monday anyway? I called Nick. I wanted his opinion. He agreed, he didnt want him x-rayed either. 

Yesterday I felt like no one had their stuff together. It was so frustrating. 

He gets weighed every morning. (and it has to be done before 6:00 am HOW CONVENIENT!) 

Since the 31st he has been loosing weight. He has been having really bad gas issues and has only had a bowel movement because of a suppository. We have all been there. We have all had gas or pooping troubles. It doesnt make your tummy feel very nice and the last thing you want to do is eat. Well Carson didnt want to eat much either. So I wasnt surprised that he was loosing weight.

He lost weight from the 31st to yesterday the 3rd because of this they (the doctors) wanted me to talk to a nutritionist, which I am not against. I am all for learning, especially if it will benefit Carson. However, last time a nutritionist came to talk to us I noticed she was pregnant. We got to talking and I was asking if she was going to nurse and I was giving her advice about nursing that she didnt know. Now, that is not to discredit her. She is great at what she does, nutrition, but she is not knowledgeable about breastfeeding. Its not her fault, its not required in her degree, but I dont feel comfortable getting a consultation from someone who knows nothing about breastfeeding when my child is exclusively breastfed. So I said I was willing to meet with her if they would schedule a lactation consultant to be there as well.

Today has been great! No only had Carson pooped all on his own but he has also gained weight!

Also a women came in to talk today to me who is a lactation consultant, nutritionist, and is VERY knowledgeable with cardiac kids. She was wonderful. She gave me a few pointers and told me I am doing a great job. She is going to test my milk to see how many calories it is so that if the doctors mention anything about then I can tell them.

This morning Carson went for a upper GI. Its where they make him drink this drink and watch it go through his system. Its to make sure his anatomy is perfect and to check for reflux. If this shows he might have reflux then he will go for another test Wednesday that will tell us for sure.

They say that if he has reflux it could make him bare down and could explain his lower stats and that is why they have to check.

He was also put on a new medication to help his pulmonary pressures. Apparently its a really expensive medication and it has to be approved through insurance. The approval process can take 2-3 days so we will be here at least till its approved.

He is stable on oxygen and the plan is to send him home on oxygen. Then in a couple weeks we will have an appointment in clinic and they will see if they can figure out why he is requiring oxygen. They will do an echo there and then if needed then they will schedule him to go to the cath lab again. (If he does have to go to the cath lab then I will post a entry explaining exactly why, if not im not getting into all that detail).

Right now they are scheduling a meeting for Nick and I with the doctors so that we can all get together and figure out what the true plan is.

To go home Carson needs to stay stable on oxygen (which he has been for days!), he needs to gain weight three consecutive days, and he needs to get approved for that medication.

I feel like I have gone through a crash course in nursing, I am always asking questions and wanting to know exactly what is going on. I am Carson’s advocate. I have to speak up for him because he cannot speak up for himself.

Overall he is in great spirits. He is sleeping in my arms as I type this. He is very clingy, moreso than normal, but I cannot blame him. 

 

 

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.