Care Conference

It has been a rough 24 hours.  We had a lot thrown at us in a very short time.  Last night we had the Care Conference where we discussed Kai's situation and his upcoming care.  We got together with several of the specialists that have been overseeing Kai's care/situation.  The conference itself was fairly positive.  The overall consensus was that a tracheotomy is the best and safest route to go at this time.  More damage is being done by the current tube in his mouth than a trach would do.  They all seemed to see the trach as a temporary measure right now.  In fact, the ENT doctor said that there is a procedure that can be done to bring Kai's jaw forward, which would bring his tongue forward and relieve the pressure off the epiglottis so that it would function normally.  However, he feels like the safest way to go would be to get the trach in first and then do the procedure after.  

The RT (respiratory therapist) said that the current tube could do more damage to his vocal cords, lungs and esophagus than the trach would.  She also mentioned that having the tube in could damage the soft palate and create an oral aversion (which we certainly don't want).

The geneticist said that they have been unable to identify a syndrome or any genetic abnormalities and that once we get the airway issue corrected, we are looking at a non-lethal case.  Basically, Kai has a really good chance of surviving--that he won't just stop breathing on us or have heart failure (or have a SIDS-like case).  Additionally, when there is no syndrome, children with trache's often do much better.  

We actually got to see a baby who was about to be released to go home who had a trache.  The mother said that had they made the decision to do the trache earlier, her baby might have been released much sooner.  She said that once her baby got the trache, she became much more relaxed and started to thrive.  The nurses say that those who get the trache actually become more like a baby and less like a patient.  We will also be in charge of changing the tubing and all the care so that when Kai is released we will be competent.  

Along with the trache is the GT tube, where they insert a feeding tube right into the stomach.  The other option is to have the tube in the mouth or running through the nose down into the stomach.  Again, it seems so invasive, but we are aiming at long-term results versus short-term desires.  With the GT tube we will be able to work on breastfeeding (or bottle feeding if need be).  We will also be able to work on Kai's sucking reflex, and keep the oral aversion to a minimum.  

There was one other thing thrown at us today, amidst our turmoil of decision making.  Audiology finally came in to do a hearing assessment on Kai.  The good news is that he can hear.  The bad news is that he can't hear very well--out of either ear, and it is permanent.  He can hear slightly better out of his right than his left (which we expected), and he can hear lower frequencies better than higher frequencies.  They briefly mentioned hearing aids as an intervention, but at this point in time they are going to wait until he is more "medically stable" and do another assessment (most likely in four to six weeks) and go from there. 

To end on a positive note, Kai gained an additional 80 grams last night which brings him to just over four pounds.  He did drop 30 grams the night before but overall he is still gaining--on an upward trend, which is what we like to see!