They took some normal vital signs and height and weight and all that jazz. But really this appointment was about getting to know Noah and all of his complexities. The doctor started by saying that they all had a chance to review Noah's medical history and she recited it for me off the top of her head. Color me impressed! She knew the names of all of his doctors and what they have ordered and diagnosed and what procedures had been performed. She seemed like a very smart woman. So after a brief synopsis of Noah's history she asked me my favorite question: What is you biggest concern right now?
Perfect!
I told her that I am actually in the process of checking out some second opinions from the team at Texas Children's Hospital in Houston. I told her how I felt that there wasn't a plan... "We don't even have a 'pluh.'" [FRIENDS reference] Anyway, I went on to say that the goal of any person with a trach should be and almost always is decannulation. I realize that for some people that just isn't physically possible. But for Noah, I have noticed such improvements over the past year that I think it is totally something he can accomplish. He has done so much work and gotten so much better all on his own. I want to see what is possible if we give him a little but of help. Maybe that means surgery. Maybe that means using a speaking valve more and trying to cap his trach. I don't really know what it means and I would like to have a plan. Even if it's a 5 year plan. I just want to know that we are moving somewhere.
So after my little soap box rant the doctor thought I made some very good points and she said she would be willing to advocate for us to the team at Dell and help us get to the point of having a next step for Noah's airway. She also thought it might be a god idea for second opinions just to gain new perspective.
Then we went on to discuss other areas of Noah. The Child Life Specialist asked me what his typical day looks like and what kinds of interactions he makes. I told her that Noah is very cognitively aware and very smart. But it is hard for him to be expressive with his body in the way that he wants to so I feel like he gets frustrated and has a hard time coping. I, for one, would be very frustrated as a PMD patient. You can't manipulate your environment or even make your own body do what you want it to. Noah's only way of communicating is crying. He has no words to tell us what he needs so he cries till we figure it out. Sometimes it's easy and sometimes he just has to cry until he falls asleep. It breaks my heart and I hope some day we can give him words or a way to tell us what he needs. The Child Life Specialist is also in the clinic to support siblings. They have a play room with different books and activities so if I ever had to bring Oliver along, he could go off with the Child Life Specialist and play while we see the doctor. They also help siblings learn to cope with new diagnoses or equipment that their brother or sister may have. They have dolls and books and activities to help them learn about it instead of being scared or overwhelmed.
We talked some more with the doctor about different medical problems that Noah has or that we anticipate him having. I told her that I like to be very proactive with Noah's treatment and begin medications or regimens at the beginning or even before a problem occurs just to minimize his discomfort. At this clinic they do a yearly check up where we will discuss our goals for Noah and his health as well as address any new things that have popped up in the past year or things we think will pop up in the year to come. They will also serve as a middle man between us and the rest of his specialists at Dell. We are to call the clinic for anything we need and then they will contact whatever doctor is needed. They also have monthly conference calls with the trach clinic staff at Dell to discuss patients that they share.
Overall, it was a very good appointment. I was very impressed by the doctor as well as the professionalism of the rest of the staff. I am hoping that this transition will be beneficial to us and help us get the best care for Noah. We are very sad to leave our old pediatrician because he is such a wonderful doctor and person. Oliver will still continue to see him though so we can give updates on Noah.
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