Speak Up


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. 




One thought on “Speak Up

  1. Piper

    We lucked out–our surgeon was the Chief of Surgery so he was always the final word in our case :p If another dr/resident tried to change our plan of action, they had to answer to the Chief so things were fairly consistent and when they weren’t, it went back as soon as rounds were done next. He was wonderful–he always made sure I was there for morning and evening rounds and included me–he would tell his students that parents know the babies best so they are the ones to help you decide how they are doing 🙂

    heh–I made an x-ray tech mad :p Iz had several x-rays with the portable machine while we were there and one tech set it up and was ready to push the button when I stepped back in and stopped her–she didnt put the litte lead apron over Iz and I want my daughter to be able to have children someday if she so desires. The tech was pissed that I interfered but you know what? I DONT CARE. Our PICU nurse gave me a thumbs up LOL

    My IBCLC for Iz told me I should become one :p She nursed her kids and has been doing this for a long time but I’ve been able to teach her a few things 😉 She says I dont even need her but I was crossing my t’s and dotting my i’s because of her weight-gain-issues and had my dr-approved backup.

    It will be wonderful when you get to go home 🙂


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