Thursday, November 11, 2010

Back home....again

After a very frustrating 17 hours in the ER, Matthew and I came home.  I'm not sure which is more bothersome-- knowing something is wrong but being told there isn't anything (like today) or not having a clue something is wrong and being kicked in the gut with the bad news (like the many shocks we've experienced w/Matthew).  

Why do we think something is wrong?  Matthew is not tolerating feeds, his legs are turning different shades, and his spleen is enlarged.  This is all too familiar, we saw it (save the leg coloring) right before he was diagnosed w/the PDA.  

Today I was told "we've ruled out the scary, so you can go home now."  My response to that "um, no, you ruled out SOME of the scary. Without an echo, there is still some that looms."  I'd have been perplexed, but happy, if we had an echo that had told us it wasn't heart related.  Instead, we came home without one.  I think I could have pushed, but I was fed up and thought I'd rather go see our original cardiologist or even gone over to another children's hospital than deal w/this cardio team further.

We need a different set of eyes.  I'm certain part of the trouble is that Matthew doesn't exhibit typical symptoms for common ailments.  It took months for anyone to diagnose the PDA, because Matthew looked "too healthy", "too chunky", "not like a cardio baby".  But he was, and it was a huge issue.  And now we have similar symptoms as before and are being told the same line "he looks too good for it to be x".  Yes, he does right now. I'd like to figure out what is wrong before it becomes a huge issue and he doesn't look good.  

At about 5:00 this morning, I was wishing I had thought about the fact we'd need to be seen by cardio on this visit to the ER.  If I had thought about that, I would have gone to the other children's hospital a few blocks from where we were.  4 out of 5 of our experiences w/TCH cardiology have not been good. Today made it 5 out of 6.  I really wish I had remembered that and done something different.  

Oh well, now to dust off and figure out what to do next.  We have a call in w/our original cardiologist who was out of the office today.  If he agrees it is not urgent, we'll just wait patiently for our Wednesday appointment.  

A huge thank you to Kirsten, who kept me company last night until the wee hours this morning.  Your company kept me from being scared and angry.  Thank you!!  And thank you to everyone who continues to pray for our sweet baby Matthew!

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