Saturday, November 13, 2010

Pediatric Cardiology Conference Day 2

Day 2 started off the same as Day 1 with a few parents from other hospitals going up in front of the group to talk of their stories and the impact that the time between the Norwood and Glenn had on their lives.  As one mom said best "We want the doctors to keep as as informed as absolutely possible and yet other times we want to be blissfully ignorant".  I get that, I think I've even felt that desire to be blissfully ignorant but my obsession with knowing all the facts always wins out. 

Some of the topics yesterday were:
  • Pediatrician - stressing the importance that all of these HLHS babies leave the hospital post-Norwood with a Pediatrician already selected; if possible actually having the Cardiology staff interacting with the Ped prior to discharge so that the 1st Peds appointment already has the baby's history in the chart
  • Vaccinations - everyone's all over the board about these; some Peds are hesitant to do them and refer to the Cardiologist; I spoke up and mentioned how our Card team refers us to our Ped on any "normal baby stuff"; but that most families end up dancing between those two parties looking to get a straight answer *most important is the fact that in this Interstage timeframe, we as parents need to have a rough estimate of when will the pre-Glenn cath be scheduled and the Glenn to make sure that we work any vacc's in a workable timeframe*
  • Discharge protocol - again, it varies so substantially between each hospital.  As discussed in Day 1, some hospitals will discharge directly from the PICU/PSHU; I don't agree with that, we would have been soooo clueless as to how to do things without training on the general floor pre-discharge.  But another Heart Mom who was there from Hope and our babies were literally hospitalized at the same time felt like she learned everything she needed in the PSHU to go home prepared - so then that raises the question; if it's possible to do the training up there - why isn't it consistent for everyone?
As part of discharge protocol, were we provided with the following?:
  • Medication Chart that included complete list of mandatory and optional meds (like tylenol) with dosages and timing instructions - YES
  • NG tube placement instructions in the event that she pulled her tube and I needed to replace on my own - YES
  • Outline of symptoms and what to watch for signs of distress - YES
  • Pulse Ox - YES (I was shocked to find that most hospitals cannot get approval for their parents to have at home monitoring)
  • We in fact were given a little binder of information that included images of healthy heart and how a Norwood varies from that, a glossary of terms, pager #'s for the Cardiology team, etc - while I found all of that helpful, that would have been a Godsend on Norwood day 2 or 3 - not discharge time
What about all of you - do you think that you were properly prepared with training and information when it was time to be discharged?

As part of the parent breakout session yesterday we were tasked with trying to brainstorm what sort of help we would have wanted to receive from the medical professionals following diagnosis
Here's that list:
  • "Welcome Kit" - complete with other parent mentors
  • Binder broken out by stages: Understanding HLHS, Prenatal options, Picking your Care team, Delivery decisions, Norwood, Interphase, Glenn, Fontan
What else would have helped you in those days and weeks following your diagnosis if you found out prenatally?  What can we do as parents of babies and kids with CHDs to make CHDs as popular as the American Cancer Society has done for doctors offices, commercials, marketing, etc?


  1. Thanks y really was searching for this on the web again thanks a lot and sorry for my bad english
    i live in the Us what can you day about this doctors Kids

  2. One of the things we really wanted was a breakout of everything, just like you mention with the binder. One of the hardest things for us was to try to grasp and understand how long we might be in the hospital, when they might do the first surgery, etc. An estimate/average of time frames would've been nice, but I understand they probably don't want to give those types of things in the event that something happened and the child would be in longer. We also had the additional decision to make whether we would do the traditional Norwood or the Hybrid Norwood since our hospital (U of Minnesota - Amplatz Children's) offers both to all patients.

    After his birth, we really wished they would've given us a listing of all of the doctors that would be involved in Wyatt's care. It was so overwhelming to know who was who and what their roles were. I still, to this day, get bills for people that worked with Wyatt and I have no idea who they are.

    We also did not get sent home with a pulse oximeter and we do not have one. Since Wyatt had the Hybrid, he goes in weekly for echos and they check his sats then. He also has a homecare nurse that comes once a week to check his sats, weight, and vitals.

    At discharge, they pretty much just told us things to watch for (labored breathing, sweating while eating, blue gums/stomach) and gave us the numbers to call.

    That's about all I can think of right now. This conference sounds like it was so interesting!