Every parent who has a child who sees any sort of a "specialist" has to come up with a system for organizing medical reports and for keeping track of appointments. I use a small year-long planner for keeping track of appointments, and I have a binder for keeping track of Nolan's medical records. It used to be labeled as the "Hearing" binder, but is now subdivided into ENT, audiology, GI, urology, radiology, and neurology.I've moved the neurology patient history form to the front of the binder, along with the (normal) EEG results and the sleep study results. I also typed up a list of all previous labs Nolan has had run, just in case the neurologist wants to order any laboratory tests. I don't want to needlessly duplicate anything that has already been done!
I was on a parent forum, and one of the mothers there suggested something that is very simple, but also something I have never done. She said to write down your questions for the doctor (which I have done before) and to leave space for him to write in an answer. This is simple, but also wonderfully brilliant. Often, when we are actually in the doctor's office, we ask the questions on our prepared list, but the conversation runs astray and we never get to all of them. Or the doctor glosses over a question, and it comes back to worry us later.
I wrote down a few questions for the neurologist, keeping the list to six questions. I left plenty of room for him to respond, so hopefully we'll get some answers tomorrow (though I'm not getting my hopes up too high that he'll look at the comprehensive medical picture). My questions are:
- Should we have a monitor for Nolan at night, since he has central apnea?
- Will the Tylenol with codeine be safe for him after the tonsillectomy?
- How can the central apnea be treated?
- Can the staring spells be related to the central apnea?
- Could the hearing loss, posterior urethral valves, severe GERD, and central apnea be caused by one problem?
- Is there any testing we can do to see if these things all tie together?
8 comments:
Hey Leah! I noticed that you have been following my blog. I can't thank you enough for your prayers for Blake. We will be doing the same for your son!
Hope it goes well and you can get all those answered!
I hope you get some clear answers Leah. What a great idea to leave space for the doc to write. I have been using a voice recorder app on my cell phone. Then I can replay the visits back to my husband since he never gets to go along. It's stunning how much information passes in an appointment that I had totally missed or in some cases, misinterpreted. You look really well prepared, as always. I'm really curious to hear his answer to #5.
I ran across this blog post and thought I would make a comment. On your question number 6., you may want to ask for a geneticist visit. As they would have more knowledge on whether there may be something behind all of the issues. When my daughter was young I wasn't sure if something was behind all of her issues but now I know there is something only we don't know what. 13 years and she still has a Syndrome Without A Name. If you go here undiagnosed-usa.org you will find the definition of a syndrome. A Syndrome is a group of signs, symptoms, or features that occur together and create a picture which may suggest the presence of a particular medical condition or disorder.
You are totally organized and ready for this appointment.
Deep breath.....
I will be thinking of you today.
Wow. VERY PREPARED.
Good idea to record the docs answers too... you might not be able to read his/her writing, if my experience shows anything :)
Julie
Good luck!
Good luck! We'll miss you at ST playgroup this week, but hopefully you can make it up some other time. Ben says hi to Matt and Nolan. Let us know how things go tomorrow.
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