Wednesday, August 26, 2009

I will not say it

Yesterday's post just had to be written, although I desperately wanted to share information about our long day in KY, I needed to get that off my chest first. Lillian saw two specialists Monday, ENT and pulmonology. First just let me say I got lost a few times in parking garages and buildings...although it is pretty easy to find where you are going in a car, it's difficult to figure out where you are supposed to park and such. So after finding myself in a completely wrong building, I finally got to her ENT doctor 15 minutes late. It was a ZOO in that place. All the time I'm sitting there thinking UGH all these people and their germs and she's already sick and I'm sick and we're spreading our germs. *shaking head* Again, it's wondering whether or not you are making the right choices. sidebar- non-parents should never pass judgement on parents bc sometimes you just don't know what to do. having children does not make you perfect. Anyway, we waited for what seemed like eternity, almost an hour and finally met the Dr. She was extremely nice. Really liked her. She said the tubes looked good and if they didn't fall out in three years, well then they'd need to be replaced. News to me. I thought they had to be changed every year. She was enthusiastic about getting her started on the decannulation process and was glad we would be seeing the pulmonologist later that day. That the two of them would work together on the process. They also scheduled her for a feeding study to see if she aspirates. That ought to be interesting. We were finished there in just enough time to reach the other doctor with five minutes to spare. Things were going fairly smooth until it was determined that she needed a breathing treatment. Well, I don't know why, but she cried pitifully though the whole thing. I don't know if it was because she was tired, hungry, or just feeling bad, but it was awful. They did use a different sort of mask too, it was not a pleasant ordeal. It was very strange to be talking about her to people who knew nothing of her history. There was A LOT to share. Needless to say, they have her on a totally different medication regimen to prevent going into the hospital, which has seemed to be really good. They also want her on prophylaxis tobramycin nebs---amen for that. They asked me about sputum cultures and I said, they don't do those at Riley and get this, she asked me why----now doesn't that just make you laugh??? I told her the reasoning I've been given and she just shook her head( this is the NP). So after a lengthy discussion the doctor came in. The quietest most mild mannered man. Very approachable. He was so soft spoken, I felt like I had to really listen to hear every thing he was saying. Bottom line....they are coordinating with ENT to get a flexible and hard bronch done to check the airways. I'm supposed to get her scheduled with the sleep disorder center for a sleep study. He ordered a cap for her trach and once she is over this illness, we are supposed to start capping her trach. He would like to see if she gets through everything ok, hopeful to be decannulated by November. This means upcoming hospitalizations and lots of trips to KY. Her swallow study is scheduled for Sept 3, we follow up with plastics on Sept 4, and I sitll need to call and schedule the sleep study. I've just been hoping to start feeling better so I have a clear head. It was an eventful, exhausting day. Scary. Exciting and scary all at the same time.

As for my title, I will not say she woke up without a you know what and she might be feeling you know what. She has tricked me every other day by appearing to be getting over you know what. So I'll leave it at that. Know what I mean?


  1. That is a lot to take in, in a short amount of time. You are doing a great job Mama. YOU know her better than anyone and I know you will do what is best. Hang in there...God has great plans.


  2. sounds like quite a day, a cap for trach that sounds very good. glad to heat she is felling you know what i hope she has another night like that.


  3. Anything else? Wow, nothing to say but you really amaze me!Lillian is lucky to have you as her mom!

  4. Wow. That is a lot! Capping is a good thing! ((Hugs))