Today I had extensive discussions with Yale's doctors, nurses and cardiologist about WHY oh Why my little man is swollen up like a balloon thats going to float away....OMG
I finally had enough and began to throw a tantrum that NOBODY is listening to me, and I get that Yale's function is a very strong factor in his poor oxygen saturation...but you think the fact that he hasn't peed for DAYS might have a little bit to do with it. Finally the doctor in charge politely took the time to discuss with me...and legitimize my theories, and also explained why they are doing what they are doing. She agreed that my thoughts that lasix immunity could be the case...but then Yale proved that wrong when he had a big pee. They are worried that all the fluid is in his tissue, not his blood and so his blood may in fact be dehydrated, which in turn makes his kidneys think he is dehydrated and so he stops peeing. Which would be ruled out by the big pee you would think? I dunno...I'm just a mom I guess. And then they turned down his milrinone because he was holding higher sats and then he got mad for three hours because he was not having accurate sat monitoring and they kept bugging him while he was sleeping...and they realized that no matter how much oxygen he has on him, it has no effect on his sats. Which I could have told you..because he is swollen to twice his size... HELLO.... so they turned the milrinone back up. its like this never ending circle of chasing symptoms and all I want is a new diuretic to be introduced... which will be done... since I turned on the frustration water works and someone took the time to ask why I was so mad, and then realize that its not an OBSCENE request and can be stopped if it shows beneficial affects. And they want to add another med to help with function called digoxin(sp?) which I am fine with because any help function wise is A O K with me... we want to make this heart last as long as we can.... but really.... can we just get this kid to a negative fluid balance please....I mean he was restricted to a total fluid intake of 800mls...and now he's being pumped with meds and iv fluid as well his normal volume in formula... and he's not peeing... much... hopefully the new diuretic will soon arrive from pharmacy and begin to take effect.
Anyhoo....so now I am home because they had ordered blood work and Xray and a kidney function ultrasound and I just couldn't sit by while Yale screamed through it all... so I am at home waiting for my sister to arrive.... (We're going to go see Lenny Kravitz tomorrow night...a welcomed distraction) I think I've lost all patience with that place...and I don't know why..I normally sit by and let the doctors work there magic...but for some reason I just don't have faith that they're doing the best they can.... and so I've been advocating for someone to help the kiddo pee.... and its be a long hard day.... and its not close to done yet.... anyhoo...so..Like I said the sister is coming to visit...so I might not update as often...so please again...take it that no news is just that...no news... if anything happens that is different that this norm, then I will feel obligated to share it... :)
Please pray for us
2 comments:
Tanna, I am so sorry you are not being heard. That must be so frustrating. I hope that Yale's swelling goes down. It sounds like you know what you are talking about. I'll keep praying for your little man. Have fun at the concert!! Tanya
I'll be praying, and you are right, you are just a mom, but MOMS know there children the BEST!! Some day, maybe the Dr.'s will figure that out!! I know it can be so frustrating, so try to hang in there, you are doing the right thing by standing up for what you think is the best care for Yale. Have fun at the concert,
Millie and Colin-HLHS
cutiecolin.blogspot.com
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