Today Lillian had a routine visit with her pulmonologist. They made me sign a form today that if I'm ten minutes late I'll be asked to reschedule or be "worked in" to the schedule. It's apparently a new office policy, effictive immediately. Well, I say that is a pretty poor policy to slap on people. Considering they make you wait far longer than ten minutes...I fully expect to have no waiting the next time we go....yeah right. Why don't they just DEAL with people who are chronically late...that's my question. It's not really hard to identify the folks who are ALWAYS late. I'm just sayin'.
They have ordered a sedated chest CT for her on the 28th. They want to get a good picture of her lungs, check out her lung disease status...check for bronchiectasis. The thought process being how to decide how to set the best preventitive care plan for the winter season. There was talk of the vest. We've never had to use the vest..but it doesn't sound all that bad to me. For those of you who don't know...it is a vest the basically shakes to keep stuff stirred up and out of the lungs. Since Lillian has an immune suppression disorder that affects her lungs, it sounds like it could be a good idea. I'm all for anything that keeps pneumonia away. They are trying to transition her to a spacer for her treatments...but right now, we are just going to use it for albuterol treatments that may be needed for school. Personally, I like the nebs, it just seems more effective, but they say at her age "they" want to see kids move to the spacer. I guess "they" would be insurance. I don't know.
They also referred us to the sleep center again. She thought it would be a good idea to have another sleep study, but wanted to leave that decision to the sleep study people after we have a consultation with them. Lillian has had some distrubing (to me) snoring/retracting/yawning episodes in her sleep and it bothers me. There have been lots of changes to her airways/anatomy since November. It is kind of my worse nightmare to think of her having to get a trach again, but I wouldn't hesitate if that's what she needed.
I still need to schedule her cardiology and ENT visits. I know this is going to sound "crazy mom" talking...but I need to share it to get it out of my head. These kinds of appointments are tough. It is a harsh reminder of the fragility...or a reminder of the depth of her issues medically. I know she has conquered many many obstacles and survived so much and I'm so grateful. I know there are mom's dealing with lots harder situations, but this is my reality and today was another hard day.
God is good...He sent two of my beloved friends to call me, neither of them knowing I was on my long drive back home, and they prayed and it was just what I needed. Thank you Jesus for ALWAYS being there.