11/26 (Tuesday) - Bittersweet

Unfortunately, our great news from the dye test is over shadowed with new information today. Terry briefly mentioned yesturday that the doctors were concerned about Leo's gag and swallow reflexes. They were the focus of today. His doctor does not think he has a proper gag reflex and it is impossible to eat by mouth without the reflex because it is the airway's protection against food. They will not even attempt to feed him by mouth until they are confident his reflexes will protect his lungs. There is a possibility that his throat could still be healing from surgery or the pain killers are weakening his reflex and it could improve with time. Unfortunately, it appears the more likely scenario is that there is a problem with his nerves or a neurological issue preventing the normal response. He also seems to have some issues with the nerves in his face.  Possible weakness on the left side. This has been questionable since birth, but hard to evaluate because he always has so many things taped to his little face. Since he is now showing two symptoms of nerve damage they are taking it more seriously. His doctor has asked for a consult from neurology and he will eventually receive an MRI. She made it seem like more information from neurology will be a waiting game because they do not want to put him under anesthesia for an MRI because that means going back on the ventilator.

Other than the initial shock at Leo's delivery that he was born with severe medical issues, I think this news has hit us the hardest because there is no immediate solution. This could mean long term use of a feeding tube and an extended stay in the NICU. It is still very early in the doctors' evaluation of this problem and we are hoping for the best.

Leo also had a really rough night.  He was very agitated and kept crying out.  They increased his pain medication from 0.4 to 1.0.  This is a significant increase and he is very "out of it" today.  His doctors seem very concerned about finding the source of his pain. They have not made any changes in his treatment lately should elicit the painful response and he was content on the lower pain medication for several days. They have reduced it back down to 0.7 today, but are watching him closely. It is really hard when your baby is crying out and you cannot pick him up.

He is starting minimal formula feeding today through his tube. He is only receiving a syringe full about the size of children's Tylenol.  They will continue to increase it and do x-rays to check for fluid from chylothorax. We are hoping the feeling of a full belly will give him some comfort by Thanksgiving. He also decreased his breathing support another notch today so that is good news.

One step forward and two steps back sums up today......thank you for everyone's prayers and continued support.