Swallow Study

Monday I was extremely frustrated because I had been waiting for a couple weeks to get a call back from the GI doctor's office regarding whether or not they had been able to schedule Caden's swallow study at Stanford for next Tuesday, May 19. She said she was going to do it for that day, but I hadn't gotten a call telling me it was scheduled. And, I left more than one message at her office to try to find out. Finally, on Monday, I decided to just go into the office and find out in person. When I got there, I found out the doctor was on vacation this week, so her medical assistant talked to me. She said the study hadn't been scheduled yet, but she would do it that day and call me back to let me know. Later that morning, she called and left a message on my home phone while I was at the pharmacy, and said that she was unable to schedule the study because Stanford was scheduling three months out, UC Davis was at least two months, and Sutter Memorial was also three months out. She wanted to know what I wanted to do. Well, I wanted to scream! I was so frustrated that we had lost three weeks because the ball was dropped and the study didn't get scheduled anywhere! So, I called the office back, and of course, was not able to actually get anybody on the phone, and had to leave a message. I told her to just schedule the very first appointment at whatever facility could get us in the soonest. And, I have yet to hear back from her about this subject.

Later in the afternoon, I decided I was going to do more research on my own and see if I could figure out any other way to get the study done sooner because I can't conceive waiting three months before finding out if Caden is still aspirating. He would be 7 months old by then! So, I emailed the OT feeding therapist who worked with Caden when we were at Stanford to see if she had any suggestions on ways we could get in sooner. She emailed me back right away and said she looked at the schedule for the 19th and thought there was an opening at 1:45 that afternoon but she didn't do the scheduling so couldn't add us herself. She suggested having our pediatrician call and get the request in right away in order to get the spot. So, I immediately got on the phone and called our pediatrician's office and left a message for him to call me as soon as possible. He called me back within 10 minutes (have I mentioned what an awesome pediatrician we have?!) and I explained the situation to him and asked him to please call Stanford right away and see if they could get Caden in at 1:45 on the 19th. He said he would be happy to and would let me know what he found out.

I anxiously waited to hear back from our ped until mid afternoon on Tuesday. I had to control myself from calling his office to find out what was going on. But I knew he would call me as soon as he knew something. And he did. When he called me I asked him what he found out and he said he found out that Caden now has an appointment for 1:45 pm on Tuesday, May 19 at Stanford!!! Exactly what we wanted! Now, we will have both appointments that day just like we hoped. What a relief to be able to have both appointments on the same day, AND to be able to get the swallow study done! We are so eager to find out if he is still aspirating. Because if he's not, we can start working on transitioning him to oral feeds as soon as possible! We have a feeding therapist in Sacramento who is going to be coming to our house to work with us starting May 22 and we really needed the information from the study before we started working with Caden. And, since we will be going on vacation in June for two and a half weeks (the kids and I, Greg only gets a few days), I really wanted to be able to work on the feedings while we were gone and I had the help of my family.

Anyway, the moral of this story is that you need to advocate for your children. You don't have to just sit back and wait for the doctors to do something. You may have to do all the legwork yourself, but it is possible to get things done in a more timely manner! You just have to put in the effort. I am really happy with the way things turned out and am so grateful for our relationship with the fantastic OT at Stanford! None of this would have been possible without her “insider information.” We'll keep you posted on the results of the study.