Monday PM update

It is 5pm Monday night, and we had thought earlier in the day that we would be well on our way home at this point, but such is not the case.  We just had our ENT (Ear Nose Throat) consultation.  This came about b/c I was talking with the RN from our cardiologist's office about how well Maya was recovering.  She asked if I had any questions and I said sort of matter of factly, that Maya has been choking everyt

ime she drinks, and is that normal.  She said no it wasn't.  Then she asked us to have one of her nurses watch her drink, next time she takes a drink.  So then we followed Maya around like hawks, waiting and trying to get her to take a drink (For any of you who spend a lot of time with Maya, this is fairly amusing b/c Maya is ALWAYS thristly, and never refuses a drink), well she was not cooperating and a few hours late

r, she finally took a drink and choked.  They then had the surgeon who had performed the heart surgery talk to us.  He explained that they good news was that she was making some improvements in her sound generation, which 

leads him to believe this damage is temporary.  He then went on to say that the damage could have been caused one of two ways: 1. the breathing tube caused irritation 2. there is a nerve that surrounds the area around the PDA (area that he sutured shut during surgery), and that the stretching may have irritated the nerve. 

 

Fast forward to 4pm, and our ENT consultation.   They came in with a black instrument case, that resembled a trumpet case.  That was the "scope".  It is an instrument that has a camera and light on it, imagine a pirate's telescope, but on the end of the telescope is a piece of licorice lace, dangling down, with a light and camera built in

to the end of the licorice lace.  So Chris departed the room, since he had this scope procedure attempted on him, and didn't go through with it.  So I stayed and held Maya in the chair, while they navigated the licorice lace part of the scope down in her left nostril and down into her throat.  Maya cried, but really not that bad.  The end result of their scope was that Maya's left vocal cord is partially paralyzed.  This is what is causing her to choke on liquids, as it is seeping past the cords.   This is also what is causing the hoarse voi

ce, since the cord on the left cannot vibrate as it is suppose to.  What next?  The ENT told us that he thinks, since this is isolated to the left side, that it was probably caused during the surgery, by somehow stretching the nerve around the PDA.  He said that it is a common risk with thoracic surgery (not a risk with open-heart surgery, and had we known, maybe we would have gone for open heart, could of should of would of).  He then proceeded to say that there is no way to know if it is permanent until after a year, which means that this can last up to a year, this temporary damage.  He said the good news is that if it is permanent, they can do surgery that will move the left vocal cord into a place where she won't choke anymore.  He also said that after a few months, if she is not improving, they can inject some type of disolvable collagen that will move the left vocal cord over to improve th

e hoarseness and choking.  In the meantime, they want us to be evaluated by speech and pathology, and they want her to do a swallow study.  We are not sure whether this will be today or tomorrow.  In addition, speech will work with us to identify a new diet, as there will be some foods/beverages she cannot have.  They also said that she cannot drink thin liquids and there is a thickener that we can get to add to her beverages.  Lovely.

 

Well enough about the ENT stuff.  We also had 

our Pulmonology consult this morning, and we all agreed to not do the chest CAT scan until the 25th of August.  They assured us that there is nothing that can harm her between now and then, and that if they did the scan now, they would not be able to see what they need to due to post operative swelling in the chest cavity.  They couldn't really give us a reason for the blebs, but said that once they have a better picture of the lungs, they will be able to then determine what could be causing them and what next to do.  They did say that blebs are caused because of the lack of elasticity in the lung tissue, but that th

ey need to look at the lungs in their entirety to get the best story on what is going on.  The good news is that we were able to schedule her cardiac follow up for the same date, so that we don't have to make multiple trips here.  Although now that I am thinking about this, ENT wants a follow up in a month, and that is going to send us back her probably a week or two after that.  So end result is that we have not seen the last of Boston.  The good news is despite these weird other issues, Maya is recovering great.  She is running the halls, throughly enjoying the play room and the plethera of toys that is in the play room.  We did loose her roomate today, Natasha got to go home this afternoon, which they were very excited about.

 

Natasha peeks out from behind her curtains

That is all for now... Victoria