Sunday, Oct. 20th, 2013

Eli is doing pretty good.  His ventilator settings have been turned down to 16%, his nitric gas has been turned OFF!, they have taken out his catheter, increased his breast milk to 5 ml (only a tsp.!) every 4 hours...that's the good news.  Bad news is he had a chest x-ray this morning and the upper right side of his lung is deflated again.  They have him propped up on his side to see if that helps and they are also doing the percussion therapy/palpitations on his chest and back...he is NOT a fan! =(

2:07 PM

Eli just got the line taken out of his left atrium of his heart (they only take one out at a time).  It looked painful and he was not a happy camper. =(  Once he got more pain meds, his blankie and more head rubs he was content. =)

4:34 PM

Dr. Rabi just came in and turned Eli's oxygen off on his ventilator to see how he responded.  They had to turn it back on because he can't breathe without it.  They are lowering his dose of fentanyl (pain med) because they think this might help him breathe better on his own.  It's a hard balance of trying to wean him off things but keep him comfortable. 

He also just had another percussion/palpitation treatment (on his chest and back) to try to pop his deflated lung out.  He really really hates it, it's horrible to watch... looks like they're beating my kid up!  But it's so good for him though.

It's going to be a long night for this mama with him having his pain meds lowered and not being able to pick him up!  I have a sound machine that has the sound he used to hear in the womb of my heart...I like to think it helps but we'll see.

9:09 PM

I WANT TO KILL THE DOCTOR ON CALL RIGHT NOW!!  

He will come in for 2 SECONDS and say Eli needs his pain meds lowered...he needs to extubate, etc.  And the nurse will fight him and defend Eli and say I have had this baby for 3 nights straight...when his pain meds wear off he gets uncontrollable, he turns purple, he starts pulling on his cords/lines, we swaddle him, make sure he is changed...his heart rate goes up, his respiratory rate is too high, and the only thing that helps him is .1 of versed.(pain med)

And he just scoffs at her and is like ok I'll come back in an hour.  But before he leaves he makes her turn off his oxygen...and guess what he stopped breathing and they had to turn it right back on.

So he comes back later...night nurse is on now and has the same exact fight with her.  "I KNOW this baby...."  This nurse makes the point:  Why would we extubate him at night, it makes more sense to extubate him in the morning when he is more awake and after he has is chest x-ray to see if his lung is still deflated.  Because if they extubate him and he can't breathe and they have to reintubate him it sets his recovery back 2 days.

So then he says to lower pain meds, he wants to SEE him when he is awake.

So just make my baby suffer just so you can see exactly what TWO nurses who have spent 2-3 12 hours shifts SOLELY taking care of him meant......ugh!