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?

Pediatric Cardiology Conference

Brian and I were asked a couple of weeks ago to attend a Pediatric Cardiology Conference with some of the Cardiology staff from Hope.  Information was hard to come by to get an idea of what was going to be discussed, but we knew that it would be focusing on Single Ventricle babies between the Norwood and Glenn surgeries.  Yesterday was day 1 of the conference and it was more interesting than I can really articulate.  This group is all about getting hospitals on board to collectively share their data of these babies (most vulnerable time for a single ventricle baby is between the Norwood & Glenn) and together trying to work out ways that will reduce the mortality rate as the primary goal. 

That includes but isn't limited to:

• Parent care before discharge- up to 72 hours in the hospital where the parents are 100% responsible for care
• Determining whether it's better to discharge directly from the PSHU/PICU post-Norwood
• Whether or not it's a good idea to try and get a baby to take a bottle as a primary source of nutrition or use an NG or G tube right away
• Discharge instructions reviewed with the Heart Clinic Staff

I could go on and on, but let me just tell you, in the one breakout session that I sat through there were 6 different hospitals present and they varied WIDELY on what they did from Day 1 of that baby's life all the way through discharge.  It's no wonder that as parents we're all reading each others blogs thinking "Really - they did that, I wonder why..."  I just loved the opportunity to sit in a room with all of these professionals and listen to them talk freely amongst themselves when sometimes I think they would never be that open with a parent one on one.  I'll let everyone know what today brings...

Giving Back Update #2

The stuff just keeps on growing...check out the pic below.  Costco had great deals on really nice fluffy white towels and of course my mom aka Queen Bargain Shopper has been doing her part finding stuff at a steal.  The lastest Ronald McDonald Newsletter just came this weekend and their latest wish list also includes paper plates, paper napkins, plastic utensils - all that stuff that you sort of think "Huh, really?"  Yes, every little bit helps!

Oh and you ask what's with that plywood in the background - that's a nifty little trick that Brian's mom taught me for hosting dinner parties and you're dining room table is too small.  Just lay a table protector down and then a sheet of plywood covered with a tablecloth.  No one's the wise and you can virtually double your space.  I'd say we'll take it and put it in the basement, but it's such a pain to lug down our staircase so it'll be the backdrop for the duration I think.

Giving Back Update #1

Donations are already coming in!

We have quite a bit of sock puppetesque stuffed animals and Christmas themed baby blankets for the PSHU.  As for the RMCH we have four sets of white sheet sets and two mattress pads. 

I've already had someone volunteer to buy 10 Boppy Covers and we're looking around for the best priced Boppys. 

As for donations for the RMCH - gently used toys, pots & pans, white linens are welcomed.  So are toiletries, cleaning supplies, etc so if you think you may have something that could be of use, don't hesitate to get in touch with Brian and/or I. 

We're hoping as we get closer to 11/24, that our entire living room will be full of stuff to take down to Hope. 

Giving Back

Hi Friends and Family

As many of you know, our little family has much to be blessed and thankful for this year. To celebrate our appreciation we would like to give back to two organizations that have been crucial in Olivia’s health and treatment as well as alleviating stress off of Brian and I while we stayed at her bedside post-op Norwood & Glenn (Olivia’s first 2 surgeries). Those two organizations are the Heart Institute for Children and the Ronald McDonald House at Hope.

Many of you have asked along the way what you can do for us and here’s your opportunity. While she was hospitalized immediately post-op from the Norwood, Olivia spent something like eighteen days in the Pediatric Surgical Heart Unit at Hope Hospital. That PSHU as it’s called within the hospital was integral in helping her recover from her first surgery at just four days old. I had the misconception previously that there wasn’t a whole lot we could do for her while she was there hooked up to all the monitors, but they showed us differently. They can be dressed (so long as the right clothes are provided), wear hats, socks, fabulous headbands and bows for the girls, interact with mobiles clamped to their cribs, snuggle with stuffed animals and listen to lullabies played on the in room TV/DVD combo.

Our goal is to buy the following for the PSHU:

· 10 Boppy Pillows complete with a cover for each – it’s funny to walk into these rooms and see your little baby sort of propped up in a Boppy, not to mention therapeutic for the babies to get off of laying flat on their backs

· 10 Crib Mounting Battery Operated Mobiles for interactive stimulation -We need the high end battery operated kind because sadly the wind-up ones only last a couple of minutes and there’s not always someone around to sit there and crank them up for the little ones

· Receiving blankets, socks, front snap t-shirts in 0-3 & 3-6 mo boy/girl, hats, and hair accessories for baby girls

The Heart Institute for Children also includes the heart clinic that we visited frequently for Olivia’s checkups and Echo’s. They have a child-friendly waiting room complete with an entire library of children’s books as well as gifts that they keep stashed away to give out to patients as they’re visiting to give comfort and distract them through long echo’s (sometimes upwards of an hour depending on how calm the little one is)

We’d like to give the Heart Clinic:

· Children’s books – any and all age ranges

· Stuffed animals/toys

Last but not least-The Ronald McDonald House – they provided us with a room that was equivalent to a very nice hotel room and gave us home cooked meals each and every day. If we ran out of a toiletry they had a whole closet stockpiled with whatever we could think of just in case. There are families that have lived there on end for months and without such a place would be lost. We understand how important it is to be just a few hundred feet away from your baby because you never know when you’ll need to get back to them at a moment’s notice.

The Ronald McDonald House wish list:

· Queen sized white sheet sets

· White towels & wash clothes

· Pots & Pans

· Kitchen Utensils

· Toys (for their family playroom)

Any additional funds that may be leftover from buying gifts for the PSHU will go towards buying gifts for families staying at the Ronald McDonald house over the holidays. Many of these people are struggling to financially make ends meet with the downturned economy, usually the loss of one parent’s job to be near their child and then the additional medical expenses. Please do know that we have ear marked funds that were sent to us before and after Olivia’s arrival to donate them towards the causes above. Any and all contributions are so greatly appreciated, we simply ask that if you would like to participate that you please contact us prior to November 24th 2010 so that we have enough time to shop for everything and distribute prior to Christmas 2010. We realize and understand that many of you may be struggling as well so please do not feel obligated to participate if you will be stretched beyond your means.

Thank you all from the bottom of our hearts,

Brian, Lisa and Olivia