Well, we were supposed to blow this joint today.
Because from a Nissen standpoint Parker is good to go.
But I have yet to have a satisfactory answer to Parker’s trach sizing staying the same.   The surgical resident feels that I should just take Parker home and try to get in touch with the ENT and Pulmo on Monday.
Because all I’d need to do is leave a message and these two would be sure to call be right back.
And if you believe THAT I’ve got some sweet swamp land with you name all over it.
I can’t begin to express my frustration with an ENT Resident that won’t even stop by to consult with me.
Or the head of the Palmer team that didn’t realize that just becuase Parker can handle 48 mls an hour of a continuous feed doesn’t mean that he can handle his daily bolus requirement.
What? Can’t you just leave him on 24 hour continuous feeds, the head of Palmer team asks.
Idiot, thinks Parker’s Mama.
Because Parker is being followed by three teams, ENT, Pulmo, and Surgery we have been pretty much totally ignored.
How can that be, you ask?
Easy. Each team figures the other team will address any issues.  Which of course totally seals the fact that nobody is going to throw any effort our way.
Because I don’t want to take this kid home with a trach leak twice the size he came with WITHOUT TAKING TO SOMEBODY WHO HAS A CLUE, we are staying another night.
They are going to hook up a machine to Parker’s vent tonight. This machine will provide us with more indepth info on Parker’s current vent settings.
And then tomorrow I can see the ENT and Pulmo face to face.
Not to mention we can begin a trial run of bolus feeds.
I’ve reached the end of my rope. According to the night nurses I spent a lot of time last night crying out and talking in my sleep.  This is a sure sign that my both my emotional and physical state has hit rock bottom.
I can’t imagine why………
Twitter: mamikaze
says:
It breaks my heart when I hear about how unprofessional Doctors can be to their multi-Dis kids. The don’t understand how a quick visit to a hosptial room to read a chart can alleviate a parent’s stress.
You’re doing agreat job, Tammy! XOXO
So sorry. This hospital stuff sucks and there’s just no way to sugar coat that.
Twitter: kadiera
says:
I hate that part of being in this medical limbo – no one wants to take charge and make everyone work together, except the parents, and it’s not like we have any standing in their eyes to drag them all into the room at once.
I’m so sorry your going through all of this. It is good to stand your ground. Don’t let anyone try to plow over you and get you out sooner than Parker needs. Hopefully tomorrow you will have better ENT dr to handle his case.
Twitter: MommaHopeful
says:
Oh honey. Oh!
(ducks)(then quietly whispers) after our nissen, we haven’t been able to go back to bolus feeds ever. We pump it out over an hour. Long story…but I’m sure Parker will do much better! He’s already doing great if he’s up to 48/hr. We STILL can’t do that!
Praying for release tomorrow!
Wow, that is a super fast nissen discharge, go Parker!! I could cry for you because I so feel your pain. Being totally ignored. At least your a great b#%ch momma and you don’t leave until you get those answers!!
I’m sorry about that. These doctors sometimes (scratch that, a lot of the time) forget that their patients are real people with real families and real issues. They figure they can ignore it and it’s not their problem. I’m praying that tomorrow is better for you and Parker.
Hey
I can totally realte to this.
Im an adult with a new trach and having a lot of trouble sorting out which team will do what.
I cant be discharged till its all sorted so im stuck in for christmas.
Maybe you could try to do what they are doing with me, organizing a team meeting with all involved in the care to sort out face to face who is doing what.
good luck and hope you get home soon.
Boy do I emphasize with you! Stand tough!