Wednesday, September 25, 2013

He Can't Help Himself

During VBS, Jackson's inner-drummer couldn't be contained.  So while all the other kids did the motions to the songs, Jackson drummed.  

Friday, September 20, 2013

Read the Chart

One of the first things we do every single time Clayton checks into the hospital is tell every new attending doc, resident, med student, and nurse his medical history.  Fortunately, I have most of this written down in a form that was put together for us by the Medical Home Clinic we attend.  When I'm particularly tired of going over the details of the last ten years, I usually just hand over that set of papers for them to read themselves.  

I understand that Clayton isn't the only patient at ACH.  I understand that doctors and nurses can't remember everyone who comes across their path, along with the medical history of that child.  But for the life of me, I DO NOT understand why they can't take even a small glimpse at his history in the chart before they visit us for the initial time.  WHY is it all typed into the computer if no one ever takes the time to read it?  My main issue comes when we show up on the floor and we are treated as if we've never been to the hospital before.  HELLO?  My son is in a wheelchair.  Surely you can see that he has a history of medical issues?  And even if you couldn't see that, you would know it with a simple glance at his past medical history, which is there for all to see when you pull up his name in the computer.  

Instead we have things like this happen (after we've been in-patient for more than 12 hours):  resident comes in and asks if he is eating and drinking as normal.  READ THE CHART.  Of course he is eating and drinking as normal, because he is tube fed and I am still feeding him as usual.  :/  

Has he had any seizures or episodes?  READ THE CHART.  I've told everyone we've spoken to that he doesn't normally have seizures that we can see, we are here to see if we are missing something while he is asleep.  Of course we won't even know the answer to that now because the doc insisted on ordering that he be checked on each hour throughout the night, which meant that he DIDN'T sleep.  Which pretty much cancels out any possible results we would have gotten from the EEG. 

Nurse comes in (a nurse that has cared for Clayton many times in the past, mind you):  I've got his medication.  Oh, I guess I need a slip-tip for his g-tube . . . (staring at Clayton like a monkey staring at a math problem).  Again, how is this news that he has a g-tube when you have cared for Clayton multiple times and you have the chart right in front of you??  

I've discussed this issue with some of the doctors that we deal with the most, and they agree that for "frequent fliers" there are several breakdowns in communication.  Almost all of the medical staff in the NICU and PICU go above and beyond in making parents feel "at home" as much as it can be possible. They are the best at recognizing the journey families with chronically ill children are on.  But for some reason, that feeling does not exist on the floor.  This was why the "Medical Home Clinic" was started in the first place, but that was over five years ago, and I haven't seen that much improvement in streamlined care for the frequent fliers.  

I admit that my irritability level goes way up just being at the hospital, but it would be nice if some of the medical staff would go out of their way to read Clayton's history and recognize a family that has been down this road a bazillion times, and treat us as such. 

Rant over.  :/