Why everyone needs a Molly...

Molly has been with Vicki since the Christmas before she turned 5.  And she (Molly) has had all sorts of procedures while Vicki had them.

Admittedly, an American Girl Doll is an expensive gift for a 5 year old, but I'm glad that my entire family pitched in to get Vicki the doll and a ton of clothes and accessories.  Molly has gone into surgery with Vicki, she has gotten IVs, bandages, and for a while even had a drawn on scar that matched Vicki's.  Molly has had breathing treatments, EKGs  and had been the recipient of hundreds of blood draws.

All of this made it easier for a child to go thru all the rig a ma roll of the hospital and cardiologist visits.  To this day Vicki get anxious when we drive near the OCH, and I'll probably never get her to go to an appointment there by herself.  But Molly is Vicki's rock.

So when your child starts clinging to a toy, blanket or whatever.  If its possible to let him/her have it during doctor's appointments or hospital visits LET THEM.

Diagnosis

As many of you know getting a thorough diagnosis takes time.  V was diagnosed with a TEF at birth.  This prompted testing of all her many parts and it was ultimately decided that she had V.A.C.T.E.R.s syndrome.

V - vertebral anomalies (V has an extra rib on one side, a funny coccis and scoliosis - oh and several years later we found she was missing some adult teeth.)

A - anus (luckily for us this wasn't a problem)

C - Cardiac problems (V has plenty of those)

TE - the TE fistula (basically V's esophagus emptied into her trachea... or lungs)

R - renal or kidney (V doesn't have problem there)


So V's cardiac problems were extensive -
atrial septal defects
ventricular septal defects
tetralogy of fallot 
a left and a right superior vena cava 
double outlet right ventricle
transposed great arteries


Combined these are known as (the plumbing is as messed up as it can be and still work - and not very well at that)


The Cincinnati Children's has some good information.

In 1992 these seemed insurmountable (I heartily challenge anyone who has climbed Everest to top this - Cuz you CAN'T).   In 2011, V is in college and is THRIVING.  (Take that all you health professionals who looked at us with pity when we first took V home).

Other blogs

Since V was born before blogs (I know the stone age right?)  I didn't have access to other blogs to go to.  To read.  To know that I wasn't alone.  Support groups didn't feel right, mostly cause it didn't seem that I could get a moment away and I had so much to deal with...  right.  Now I know I probably should have taken advantage of them, but then it didn't work.

Here's a list of blogs for you to try.  If they don't work - not your disease - not your style of dealing - keep looking and know that you are not alone.

http://www.sheknows.com/parenting/articles/816188/10-blogs-for-parents-of-kids-with-special-needs-1

How to deal with doctors

The first thing to remember is that the doctors truly work for you.  They are there primarily to take care of your child and secondarily to make sure you understand what's going on.  DO NOT be afraid to ask questions.  DO NOT be afraid to ask again (or ask someone else) until you understand fully.

DO be polite, be thoughtful, understand that even though this situation is taking control of your life that their job is full of people JUST LIKE YOU.  These folks - from nurses to doctors - have spent YEARS OF THEIR LIVES and THOUSANDS OF DOLLARS to be able to do what they do.  

This does not mean, however, that they (or any of them) know EVERYTHING.  I've often heard doctors say things that I thought were crazy and wrong.  When this happens to you (and it will)  just start - politely - asking questions.

Some doctors have great bedside manners, some (like a certain brilliant cardiac surgeon in Texas) have the bedside manner of a rattle snake.  Be thankful for the ones that are nice and caring and hold strong with those that aren't.

Some nurses will let you help care for your child - if you can stomach what's going on - ask to help.  Some will not.  This is not because they think you are incompetent - they have a lot of regulations and they know the procedures better than you do.

During our experiences I've helped do spinal tap, suction airways, aspirating wounds and change bandages.  In the ICU they often do smaller "procedures"  You probably won't be able to help with those... and you probably don't want to.  Just ask that your child be given painkillers (if necessary) and has an advocate telling them what is going on (if they are awake).

10 things you should do when you learn about your child's health problems.

1.  Take a deep breath.
2.  Make sure you understand the problem.
3. Allow yourself to grieve.
4. Allow others to grieve.
5. Remember- everyone grieves in their own way.
6. Take one day (or moment) at a time.
7. Do what you need to do to get through each day.
8. Understand what your insurance will cover and what it won't.
9. Apply for any and every type of government assistance you could possibly qualify for.
10. Make sure you do one pleasurable thing every day - take up crocheting, knitting, embroidery, reading - each of these can be done free or at low cost...

Introduction (or About me)

19 years ago, my daughter was diagnosed with complex congenital heart disease (among other things).  I was 20 years old.  I had been married just over a year and lived in what seemed like a god-forsaken place at the end of the world.  It was a tiny town called Del Rio, Texas that was home to Laughlin Air Force Base.  And really - it was just the end of Texas if you went much further west you would be in Mexico. But for my purposes it could have been the south pole.


Over the years a lot of folk have said things like "I don't know how you do it" or "I don't know how I would handle your situation"  and some have said "You should write it down".  So I decided to write it down.  In the early years, I kept a journal - so I'll be referring to that from time to time - but most of this will be from memory.

Unlike most blogs - I actually plan on answering questions from readers.  So send in your questions if you have them.  I'm not a medical professional (and I don't play one on TV) but I can tell you that experience is the best teacher in the world.

Please remember that some of these memories are painful - and not just for me.  But be assured - if we got thru 19 years and managed to raise a pretty amazing young woman - you can too.

jen