I have done nothing but cry all day. I have reached the point of not wanting Bennett home, but NEEDING Bennett home. I think the thing that I am most frustrated with is he is at a point where I can take care of him at home, but no one will let me. His lungs have been at a point where he could come home for a few weeks now, but his eating still isn't. I am having a very difficult time understanding why they can feed him with a NG tube in the hospital, but I can't at home. I could understand if I wasn't a nurse, but I am qualified to put a NG tube in other peoples kids, but not my own??? I spoke with Dr. Simpson this morning and she flat out said she will not send him home with a NG tube and I told her I wasn't ready to give up on him and put in a G button...she then said he would have to stay in the NICU until he can take all of his feeds on his own.
His feeding is a double edge sward. He has to eat X amount of calories to grow and when he grows that amount increases...as soon as he catches up he has to eat more and it's like he is just one step behind. I am at a point that I am not willing to give them the next few months of his life. I feel like I am backed into a corner to give him up for them to raise for another few months or sign the consent for him to go back to surgery again. Part of me is so angry at the physician for not having a better plan in place. If she would have waited until he was completely ready to come home to do his surgery and then he would have had to have a G button they could have done both surgeries at the same time. I am not completely against a G button if that's what he needs to grow, but I feel he needs more time to prove that he needs it. I asked her for a speech/OT consult so they could evaluate his feeding and I felt like she thought I was asking for the world.
I am so tired of being told "Let's see where he is in a few weeks." I was told he would be home by his due day and that day came and went a month ago. I was told the doctor that currently has him would be the one sending him home and now she will be gone in another week or so and we will get a new doctor (which may not be such a bad thing at this point). I was told last week he would be home in 48 hours and that time too has past. Now I'm told "Let's give him a few more weeks."
I guess basically what it comes down to is I need a reasonable answer as to why they won't let me take care of him at home...to me a NG tube is not a reason and at this point I feel like it's me against them. I am in fight of flight mode and they have pushed me into a corner and I have nowhere to run...I have no choice but to fight for Bennett!
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