More Tests

Again, we don’t know what is going on w/Matthew.  We spent another hour and a half at the pediatrician’s office today.  What we know or tested for…

-Lasix (the diuretic) can cause fever in infants.  It is a known side effect but our original cardiologist has only seen it happen when given by IV.
- We checked for…
       flu—negative
       RSV-- results tomorrow
       blood counts-- normal
       chest xray—some fluid in lungs, but no pneumonia
       pulse oxygen levels-- normal

So we don’t know a lot more than when we started today, but hopefully Matthew will rebound soon.  On one hand, we hope it is a side effect of the meds.  This would give us a fix (stop giving him the med) although he won’t get relief until they fix the PDA next week.   If he’s sick, we might have to postpone the heart catheterization, which would postpone the head surgery further. Not something we want to do.

 I just gave Matthew his 2^nd dose of diuretic so we’ll see how he does with it.  Matthew still has a lot of congestion and coughing as well as the inconsolable crying.  We’ll continue to watch him closely. 

I’ve been frayed since Tuesday.  Besides the crazy day at TCH on Tuesday, I made 7 calls to doctor’s offices yesterday.  Then at every turn we’ve been reminded that not many infants have congestive heart failure.  Multiple pharmacies do not carry the liquid diuretic.  The nurse looked shocked when I told her about Matthew’s CHF and issues.  The pediatrician admitted he didn’t know the diuretic could cause fevers in infants because it is so rare for him to see an infant on them.  We are not experiencing the normal.

As I sat there during today’s blood draw, I mourned.  I miss the days when we went to the doctor for ear infections.  But just as quickly as my nerves frayed, I feel like I have regained my composure.   The mourning is over. We have an amazing baby…who is fighting everything that is thrown his way.  We are his biggest advocates!  We have amazing friends and family who have supported us all along the crazy way, for 6+ months. 

And although I may not have known much about physiology, anatomy, genetics, or medicine six months ago, I sure do now!  In fact, I’ve learned so much it has literally filled a book. 

Matthew's Notebook-Volume 1- Birth-6m

We’ll continue to update the blog with new developments.  Thank you for your continued prayers for Matthew’s comfort and our strength.