Monday, May 21, 2012

Recovering from the major episode.... but something new? Tummy issues?

We did an MRI the next day, Dr Powell said that since you are intubated, they would like to do a MRI on the brain to check.  By the afternoon, we had a preliminary results, saying that your MRI looks good.  Phew.... another good news but what's the reason for the hoo hah yesterday?

You seem to be more and more alert, thank goodness!!!!

We had the care conference with Dr Powell, we needed to know what were the tests that were done and what is the next plan.  Basically, there isn't much plan because all the test that they know, seems to come back normal, ohh... except for the metabolic test.  That's now what they were hoping, maybe he has a metabolic disorder that causes you to not breathe well?

After the meeting, the next thing we notice is your belly.  Yes... you always had belly issues, they thought that you were allergic to the normal milk at first, so, they switched you to another milk and my breastmilk.  Later, they said that you were probably allergic to dairy (cow's milk), so, they stop feeding my milk as well.  you were on a hypoallergenic milk, it smells and taste awful but you love it.  Your belly went up to 35, it's typically 30-31, so... the nurse alerted the doctor. They stop feeding after your episode but then later started feeds again through the tube. 

Though, the doctor called stating that they did a chest x-ray, it seems like there is lots of gas in there.  So, the doctor called a pediatric surgeon, John Lanoue.  The boys, CJ and mom left since it was already past 1am.  I told them that I will be waiting for the doctor to let me know what is going on and I will be in the waiting area.  At about 2+am, Dr Lanoue came, telling us that he suspect that you have Hirschsprungs.  Ok.... what is that?  He explained to me saying that the HD is a disorder of the gut which is caused by the failure of the neural crest cells (enteric ganglion cells) to migrate completely during fetal development of the intestine. The affected segment of the colon fails to relax, causing an obstruction.[1] In the majority of affected people, the disorder affects the short segment of the distal colon. In rare cases the aganglionosis involves more of the colon. In 5 percent of cases the entire colon is affected. Hirschsprung is also sometimes called congenital aganglionic megacolon.

Dr Lanoue said that we will have to NPO (stop feeding) because we need to do a biopsy to see if he really has HD or not.  Poor baby, you love food so much and now being asked to stop?  Hmm.... you were no longer a happy baby.  Your IV isn't working well and you were known to be hard stick, it takes nurses many tries to get your IV.

I went home, again hoping that this is the reason for you not breathing well.  Thinking that if we need to have a surgery for this, we are done already, and that's the reason of you not breathing well.


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