Cohen had his first couple of specialist appointments in clinics at Vandy today. We have been seeing these doctors for months in the NICU, so it was strange to actually go to the offices and see them.
Justin and I made sure we left home super early this morning, so we would have plenty of time to get there. We sat in traffic for about an hour and barely made it to the first appointment. The interstates and side roads in Nashville are still having a ton of problems from the unbelievable floods we had here in Middle TN over the weekend.
Our first stop was our ENT (ears, nose, and throat), Dr. Wooten. Out of all the specialist we will see/have seen, Dr. Wooten is one of the most trusted.(we see over 10!).We met him early on when he came to Baptist to see Cohen. He always knows us and remembers lots of details about Cohen. He has continuously been positive, but given us honest, good information. He is also great about calling, or waiting to talk to us and make sure we know everything going on with our baby. (he gets big points w/me for that)
I am not certain if I have mentioned this before on the blog, so let me back up for a minute. Dr. Wooten is who originally diagnosed Cohen with the laryngomalacia and subglottic stenosis, and initially referred us to Vandy. He also discovered that Cohen has a paralyzed left vocal cord. This was found after surgery-(the cord moved before surgery)---sometimes this happens after babies are intubated. Some other reasons this could happen are sensory and neurological issues. We had hoped no matter what the reason, it would be healed by now.
So, he did a full checkup on Cohen today, looking at his nose, ears, etc. He also did a "scope" down his nose and looked at his vocal cords and voice box again. I think this is the 6th time he has used this scope on Cohen. I have gotten to watch at least 3 of these. When he does this, we are able to watch on the screen in the room. Before Dr. Wooten said anything, I could tell that there was not improvement in the vocal cord. The left one just didn't move. He also still had tons of secretions pooled in the back of his throat. Basically, the scope showed no advancements.
Dr. Wooten made a tentative "plan" for the next few months for Cohen's care. He reminded us that it is of utmost importance to keep him healthy---do our best for him not to get a upper respiratory infection of cold. He also is going to repeat the scope in October, and do a full bronchoscopy again in the O.R. in November. The only really alarming this he told us today is Cohen is still a possible candidate for a tracheotomy. Basically, if Cohen's small airway doesn't grow, and his swallowing does not improve, his airway will be too small for him to take the deep breaths he needs. It would be like him breathing through a snorkel all the time. Dr. Wooten also wants to repeat the MRI this fall. He is still not ruling out some neuro issues like a kiari malformation.
We have spent months praying for Cohen to come home, and thankfully, our prayer has been granted. I can't tell you how wonderful he has been here at home-----I think we have focused so much on how great he has done in the the last 2 weeks, that we forget he is still dealing with these issues. I think part of me hoped some of this would just "disapear" and we wouldn't have to worry about it any further.
Today was a reality check for us. Now, let me say this. He has only been out of the hospital 2 weeks. That is not much time---All this could take up to 2 years to heal and work itself out. We ask that you pray for Cohen to remain healthy and continue to grow stronger everyday.
As for the G tube appointment, it went fine. The tube still has a mind of it's own---leaking and being all around difficult at times. The practioner gave me some new cream to put on it, and we go back in about 6 weeks.
Next week we see the Orthopedic, Pulmonary and Nutrition clinics. I think these are the areas he HAS improved on. I will update you after these appointments.
We still remain hopeful that Cohen will overcome ALL of this. He has proven over and over again how strong and willful he is! He is such a joy to us. I can't wait to share him with all of you. (as long as you don't have a cold or any contagious illness =) Thank you for your love and support as we start this new road of Cohen's journey.