Sunday, April 29, 2012

Back home... but for how long?

I apologize in advance if this seems rambling, we are all so tired anymore and run down that its hard to even think straight. Audrina was discharged on Thursday night, we never really got any answers. There is too much going on with her to determine what is causing what. She does have an umbilical hernia, but they say as long as it is reducible (you can push it in) it shouldn't be painful or causing any symptoms. So why did she develop so much pain at the same time this hernia showed up?

I emailed Addison's Colorectal surgeon in Cincinnati and he sounded as if he didn't feel that an x-ray was a sufficient workup to see if the problem was the hernia having complications or not. He offered to have us come through their ER if things don't start improving. I hate to do that, but I learned with Addison that you have to draw lines, and one of the lines I draw is that my children WILL NOT live in pain unnecessarily. I don't care what your tests say, I don't care if you can't figure it out - if my child is miserable, you will do SOMETHING. And that's what Cincinnati Children's has always done for us, cared about our child's quality of life much more than the black or white of a test result.

So we went home thinking things would improve. And then Friday afternoon, her heart started going out of control again. Her heart was repeatedly going over 230 bpm resting, and she is already on medication to control it so I can't imagine what it would've been without the medicine. I called over to the infant monitor program (she was alarming a lot for tachycardia) and they came immediately to download the alarms and show them to the cardiologist. They told me they would get back to me within the hour and I never heard from them, because a half hour later the cardiologist's office was calling me and asking me to bring Audrina in right away. They put her on a Holter monitor.... we should have results by about Tuesday. She also began a new drug called Digoxin in conjunction with her Atenolol. Today is her first day on it and she's very lethargic and having a weak cry, so I plan to give it a few days but it doesn't seem like she's going to tolerate this medication well. She was alert less than 30 minutes in the past 24 hours.

I'm not sure if I mentioned this last week, but at her follow-up at the cardiologist's office they found her to be having Bradycardia as well, so she has her SVT which is extremely fast heartbeats, and then suddenly she will drop too low as well. They are hoping the new combination of meds will help control this. Its been so frustrating with her because we feel like every week something new goes wrong with her. I asked the doctor if he thought she would outgrow this and he said that is what we hope, but there is simply no way of knowing for sure. No more alarms since starting the Digoxin so maybe we are onto something?

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