Meds

Hailey has a ton of medical professionals who she sees.  I have a list on the inside of the cupboard which houses all of their names and numbers.  On that list is all of her medications and emergency information too.  This list use to be a half of a page.  Since the crazy day when she suddenly lost the ability to swallow, that page has grown to be an entire page.  There is also another page on the other side of the cupboard which has instructions for her g tube and how to operate the feeding pump...just in case of emergency.

I say this because I am really good at listening to directions.  I am obsessive about following a schedule for her feedings and medications.  I do exactly what the doctors tell me to do.  If I have a question or don't think something is correct or working for her, I will call that doctor and ask them.  I trust the doctors.  I do my research on things and check what they are saying but I need to be able to rely on them.  I've talked about how even though some doctors have made mistakes, I have to trust them...what other choice do I have?

So the list of doctors goes like this...pediatrician, orthopaedic surgeon, gynecologist, ent, audiologist, opthomologist, rehabilitation specialist, neurologist, geneticist, 2 pediatric surgeons, gastroenterologist, dental surgeon and feeding specialist.  They all have special instructions and I write them all down, double check them and then work them into our schedule.  She sees four of these doctors at least once a year, four of them twice a year, three of them are every 3 months and two every month.

One of these doctors put Hailey on reglan while we in the hospital.  We spent 9 days giving her the reglan and four times a day, the nurses gave it to her with her feeds.  They specifically told me that the prevacid was to be given one time a day 20 minutes before feeds but the reglan was with or right before the feed.  The other day, I was looking online for a new doctor for a second opinion.  This doctor seemed to not really care when I called or brought her in and kept telling him that during every feed, there were residual stomach contents in the line when we started.  He kept telling me that as long as she was making weight gain that it was fine.  But she was still vomiting...a lot.  So while I was looking for a new doctor, I also googled reglan to see if she was receiving the therapeutic dose.  Many doctors start children like Hailey on less than therapeutic doses and then gradually increase depending on how they do.  So I wanted to know if she could get a higher dose.  When reading the medication recommendations, low and behold I came across something very interesting.  The recommended use for reglan is to give it 30 minutes before a feed...not at the same time.  So I called the doctors office and left a message.  And of course he didn't call me back (and still hasn't after 6 days).  So I started giving it to her 30 minutes before on my own and MAGIC!!  She hasn't vomited again at all...In 6 days...nothing!  And she is gaining weight beautifully.  And I have been able to up her feeds a little bit.

So the point is, sometimes we can't trust all of the doctors.  Her surgeon put in a request for a second opinion from another doctor and we have an appointment in a couple of weeks.  It just irritates me that something so simple wasn't conveyed to me.