January 24, 2014

• Update

  I am home for a little while so thought I would give an update...

  With the decrease in the possible (probable ?) epilepsy med that is causing issues, seizures have been crazy.  (He should be completely weened off it this weekend.)  We gave emergency meds Thursday evening to help settle things down.  The doctor has been searching for a new epilepsy med that will not cause interactions with the immune suppression med - Neoral/cyclosporine (The list of drugs that react is L.O.N.G and detailed).  We also need a drug that does not cause acidity issues.  Finding a drug that fit both of these criteria took some doing!!  After much searching and many rabbit trails, the doctor finally found one - Lorazepam.  Joshy started this new med last night (Fri.)  Doctor wants to keep Joshy for observation through the weekend.  We will run labs Monday to check things out.  Then if seizures are under better control and labs are looking better we will be able to head home.

  The doctor looked over the 2 nights worth of CO2 results with & without the bipap.  The conclusion, the bipap is not helping enough to warrant the nightly war/lack of sleep.  Therefore, last night we were bipap free and Joshy slept ALL night.  I can't say I did the same, but I at least slept on my own cot all night.  Even though I woke up a few times, all in all, I slept much better.  I will be taking another blanket back to the hospital with me which should help me sleep better!

  Praying these med changes to the trick.

  In the mean time, Joshy is a happy little camper!  He is acting much more like his old self...

  

  I, on the other hand, stink (a nice hot bath is next on my list of things to do!).

  I will be heading back to the hospital tonight, before night time meds, and staying until we are either Joshy is released or my Monday classes.  I find this new "improved" xanga impossible to manage from my cell phone, so LORD willing, the next update will say we are home

  • 7:51 pm
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