Travelling with a child with special medical needs

We traveled to Boston for my 2 year old son's second OHS.  I had never traveled with a toddler before.  All I knew was that the people with the little kids always get glared at and kids always scream.  It ends up, that isn't always how it is and people are generally pretty understanding.  I posted my concerns on the BabyCenter board Travelling with Children and received some fantastic advice which you can read through here: http://community.babycenter.com/post/a36518665/travelling_to_boston_w2yo_for_ohs

I also read over the TSA's web page for travelling with children which includes an informative section on travelling with medications or mobility aids. http://www.tsa.gov/traveler-information/traveling-children.  Following some really good advice I called and expressed my concerns to the TSA contact office http://www.tsa.gov/contact.  They helped me get the number for my local airports TSA office.  I contacted the local airport office and got a lot of helpful specific airport advice that really streamlined our travel experience.  All in all I found the TSA incredibly helpful.  They helped make both our trip to and from Boston an overwhelmingly positive experience.

I was pretty paranoid regarding germs during our travels so we brought sanitizing wipes on the trip.  My husband would board during the special needs boarding.  He would wipe down the walls, windows, trays, seats etc. and then install my son's car seat.   We would then board last and I was able to put him in the car seat with no problem and minimal worry.  The flight out was a non-stop flight and went flawlessly.  The flight back was in 2 segments and we had a couple of serious diaper leak problems.  Our son was on lasix, it took quite some time to find a way to diaper him without compression leaks with every urination. (The secret is Flip disposable inserts.  Whether you use cloth or disposable, you need this boost when dealing with that dang lasix pee).

It was also strongly suggested that we ditch our very nice and SUPER HEAVY car seat and get a $40 cosco Scenera car seat instead.  There is a lot of amazing information in this BabyCenter thread regarding travelling with a car seat: http://community.babycenter.com/post/a36576082/using_a_car_seat_post_open_heart_surgery

I found that clear explanations and sincere gratitude along with a wealth of patience, made for a mostly pleasant travel experience.

Getting a Second Opinion

Getting a second opinion for my son's mitral valve issues was the #1 best decision we ever made, hands down.  

Our local cardiologist told us to wait and replace his mitral valve in a few years. In his opinion, the current valve wasn't salvageable.  Because our goal was to replace the valve, we were letting LO's heart enlarge until it reached the size of an adult so the valve we implanted would be larger.  

I REALLY wanted to save the valve, so I went against the cardiologist's advice and sought a second opinion from the congenital valve program at Boston Children's.  They thought his leak was much worse than expected, that the leak explained all the weight gain issues we were experiencing as well as why he was sick so often.  They advocated for mitral valve repair to occur before this year's cold/flu season.  Our cardiologist advocated heavily against that course, in his experience, mitral valve repairs rarely worked.  He said the decision was ultimately up to us, but he felt that we were subjecting our son to a surgery that wasn't likely to succeed and we'd be replacing the valve in a few years regardless.  We sought a third opinion at CHOP.  CHOP agreed with Boston and, after reviewing the echo we sent, gently pointed out a number of issues with the original echo report that accompanied the actual echo.

We're now 9 days post op from my son's valvoplasty.  The severe mitral valve regurgitation is now trace mitral valve regurgitation and neither the surgeon nor the cardiologist expect that we'll ever need surgery again. 

If Your Toddler Needs Open Heart Surgery

The concept for this blog post was originally created for babies who need open heart surgery. I am now expanding on this to create suggestions for toddlers who need open heart surgery. We are hereby soliciting experienced advice to help other parents prepare for this situation! We want this to be an ongoing project

• If you have any ideas and/or short anecdotes to contribute, please put them in replies to this post for us to consider. We put quotation marks around all the advice that came from friends. 
• If you are a relative or friend of the toddler’s parents, please check out the last section of this page for ideas of how you can help lift their load. 
• Thank you to everyone who is helping to contribute to this list!

The Fetal Circulatory System Simplified

In a standard circulatory system, the heart performs two functions, the right side pushes blood that comes from the body out to the lungs to get oxygen added to it.  The left side receives blood with oxygen from the lungs and pushes it out to the body.  This cycle repeats with every heart beat.

However, when you are carrying your baby inside you, you provide all the oxygen.  Because your baby isn't using the lungs for oxygen, there are two special connections that the body uses to make those two separate systems in to one big system.  The special connections are called Ductus Arteriosus and Foramen Ovale.

If Your Baby Needs Open Heart Surgery

Update:  Here is a link to my full hospital packing list: https://drive.google.com/open?id=1FzROktZ9IWOKyDiKdieuBXiJrbYBzTSxvExoJf335Jw

This blog post was originally created and conceptualized over at The Blessing of Verity.  With permission from that blog owner, it is being moved here so we can keep updating and expanding the post.

We are hereby soliciting experienced advice to help other parents prepare for this situation!  We want this to be an ongoing project, so…

• If you have any ideas and/or short anecdotes to contribute, please put them in replies to this post for us to consider. We put quotation marks around all the advice that came from friends.
• If you are a relative or friend of the baby’s parents, please check out the last section of this page for ideas of how you can help lift their load.
• Thank you to everyone who is helping to contribute to this list!

Who to talk to when your child needs cardiac care

After spending a little more than two years on the heart parents board at BabyCenter community, I realized that among us we amassed some pretty amazing resources among Cardiac surgeons.  Here are some of the doctors found and their specialties.  These are the people to talk to when your child is diagnosed with a complex congenital heart defect.  

First and foremost, if you don’t know who else to ask, talk to Boston Children’s they have had the most experience overall and are a good starting point.  If your child has been given a poor prognosis and you haven’t talked to at least one of the folks below, contact them now!  

If you have trouble getting a hold of them, talk to other moms who’ve been there and see if they have contacts that can help you reach out.  Sometimes what your doctor doesn’t know can make all the difference.

There are a couple of great resources from US News and World Report.  One is the list of the best Pediatric Hospitals.  The other is a link of the best doctors