Friday, October 15, 2010

The Worry Monster

Have I mentioned lately that I'm a worrier?  I worry about this and that.. Silly things, important things, things that have already happened and things that could  happen. It's just who I am.  Being a mom, multiples the worry. Being a mom to special needs kids multiples the worry even more.

We've had many a medical crisis since Drool Prince joined our family.. Days where the drs would call and say Get Down Here NOW.. and we'd rush around and get our butts in gear..  I know the various surgeries and hospital stays have scarred Drool Prince.. I didn't realize that they had scarred me as well.

TheToddler & Drool Prince are full biological siblings.  They had the same drugs affecting their systems as they formed into little sweet babies.  It seems logical that if you start seeing signs of one's issue in the other, you might just freak a bit.. Or worry a lot.

Things mentioned that might not affect a non-heart mom like "ohh, I'm really not happy with what his heart is doing while he's sleeping." - said by the nurse conducting our sleep study on TheToddler.  

A non-heart mom would probably be a bit concerned but might not make a ton of it right away.

A heart mom who's 4yr old is sporting a pacemaker due to heart pauses of 7+ seconds would probably be concerned enough to freak out and question the nurse on "What exactly is his heart doing??".

Upon learning that her baby's heart is also pausing for 3-4 seconds while sleeping and during apnea events would probably be enough to cause the heart mom to start incessant worrying.

Said heart mom would then start having flashbacks to when the 4yr old's heart was pausing and drs telling her that anything over 3seconds made them start talking about pacemakers.

Dear God, not him too...

Being the above heart mom, I worried and worried and worried.. Then I called Dr Lung and asked if she could please get me a pulse oximeter so I could have him hooked up at night and I would know when his heart was pausing.. I could check on him, I could see that he was ok and still alive and all..  It seems like an easy enough way to make me more comfortable..  Dr Lung, being the unfeeling witch that she likes to be, basically told me I was stupid- I didn't need it, it would interrupt his sleep even more and go away shoo shoo..

Needless to say, this was the straw that broke the Momma's back and we will be finding a new Dr Lung.. I've been planning it anyway but hello, have a little compassion.

So I hung up from her and called NurseHeart.  They requested the report.  I waited over the weekend and slowly other things took up precedence in my mind.  Sure I still worried a bit in the background but I let it fall to the background and embraced distractions.

And then he'd turn blue yet again while sleeping and it'd jump to the forefront of my mind.. So I called NurseHeart to see what she'd found out.   It seems she spoke with TheToddler's cardiologist and she had some initial thoughts :

1. If it was true pausing for 4 seconds CPR would be started..
-- Not at all true. Drool Prince used to pass out and his heart was pausing for 7+ seconds.. CPR was never started bc his heart recovered on it's own.. The only difference-- Drool Prince was having pauses during waking hours, TheToddler is having them only during sleep.

2.  If it was really pausing he'd be turning blue.
-- Hello?? He turns blue at frequent times during his sleep.

NurseHeart promptly wrote down- "true pauses" and relayed that the cardio had also promised to talk to Drool Prince's  Dr.Heart knowing that the boys were related and Drool Prince has an uncommon heart issue.   The only problem??  NurseHeart wasn't sure if cardio had spoken to Dr.Heart yet..  So if I don't get a call back tonite (which seems unlikely as it's now 6:30pm), then I won't hear anything until late next week since NurseHeart is on vacay until then.

My head hurts.

My chest hurts.

I'm worried.

I don't want TheToddler to have issues.. I want him to be perfectly normal and healthy.  I want someone to tell me that heart pausing during sleep is normal.  That it's ok.  Until then, I'll sit and worry.  


  1. Was just reading some of your tweets and came back here to get the scoop and dear lord, I can't imagine how worried you are ... thinking of you. Will have you and yours in my thoughts and prayers. And will be checking back regularly until I hear all is well. <3

  2. Saw your tweets through Tubaville and came over to check... Lots of love and good thoughts coming your way.

  3. Momma Chaos -
    First off let me say that I am praying for you.
    Then let me say that sucks! Worring sucks! Let me send some positive thoughts your way.


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