Sunday, April 13, 2014

Coming Full Circle

After staying frustrated with our current GIs office for quite awhile now, they officially pushed me over the edge last week. I love the Dr. I do. He is great. That's the problem though. He is so good that he has too many patients. He can't keep up. When I call to make an appointment the soonest available is 2 months away. I could understand if we were new pt's but we aren't. We have been there for almost 6 years. So the solution (according to the office) is to handle as much as possible over the phone. I'd be fine with that if I could actually talk to (or even email) the doctor.  But I can't. It's not an option. I have to leave a voicemail for the nurse or medical assistant who will then relay the message (inaccurately) to the Dr.  Then the medical assistant or nurse of the day will call me back with an answer which makes no sense because the Dr didn't get the correct original message. So I get pissed and tell them the right message again which they relay wrong again... This has gone on for as long as I can stand. I don't want my daughter to be a patient in a practice that is this busy. It's not safe and it's not fair to her.  So we are now coming full circle. If you know Anna's story you know the whole thing began in a GIs office. We went to find out why she wasn't gaining weight and were told by that GI that we needed to get her to a neurologist because she had much bigger problems than weight gain going on. We never went back. We ended up trying to keep all of Anna's MDs in the Cook's system. But now we are going back. I trust this guy. He clearly knew what he was talking about even back then. I don't remember him or what he looked like or what the office looked like. I think I've blocked all of that out. I would be lying if I said I am not scared to go.  I'm afraid it will bring back memories that are so incredibly painful that I don't want to remember. But we must go and we must do this. Anna needs someone to listen and pay attention.  She deserves it. So I'm putting my emotions aside and taking her tomorrow to where she needs to be. Please say a prayer for all of us- for her, for me, and for the Dr. We need answers. 

Wednesday, April 9, 2014

1-10 and Letters Too

Lamictal is the med we have dreamed of!  Anna has had only 2 seizures since beginning on it and they were short and mild.  It has taken from the end of January until today to get to the full dose but we are finally there. Anna has made more progress at school since the med change than I have seen in a very long time. She is counting without problems. She is remembering letters. She is recognizing numbers. She can enter "3-0-0" on the microwave all by herself and that is huge. One of my goals for her this year was to recognize numbers so that she could cook herself some popcorn or something like that with minimal assistance. Look at the last post at her spelling test. Now look at this:

Unbelievable!  I can't even believe it is the same kid. I cant explain how good this feels for me so I know it must be so amazing for her too.  I swear there is a genius in there just dying to come out. But of course with every positive we are usually certain there will be something not so positive to accompany it. Anna has been on antibiotics twice within the past 2 1/2 weeks. She will spike a high fever and wake up with a junky cough. She had a CXR which confirms she has been aspirating. I truly believe it is happening at night and not with eating and drinking. She had a swallow study back in January that was mostly normal and the choking she had been doing has mostly resolved. We continue to use small diameter straws with all liquids to help her. I hear her do this weird swallowing thing at night and I have been pretty sure it has to do with reflux. Years ago she was scheduled to have a fundoplication which we ended up canceling and avoiding with pyloric dilation. It seemed that the delayed gastric emptying was causing things to back up which was actually the problem. Once that was fixed things improved. Well the pyloric dilation is still in effect but now there is reflux and aspiration again. We may be looking at surgery again. I hate more than anything in the world to put her through it. It breaks my heart. But lung damage is serious and I have to look at the big picture. To say I am frustrated with the GIs office would be an understatement but that's a whole other post. Suffice it to say it would be nice to communicate directly with a doctor and not through staff who can't seem to relay a message accurately.  There will be more to come on this whole issue. For now we continue the augmentin and hope for the best. Thinking about putting her through another procedure makes me want to vomit.  Excuse me while I head to the toilet.