And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Wednesday, February 15, 2012


Sorry to have been idle for the last two days. As most of you know, we were not able to get the final two tests completed on Friday and so we elected to stay through the weekend to complete our tests on Monday.  While this was a good plan, which also included us getting back home to Critter, M woke Monday morning to a horrible stomach virus that had her in the bathroom for about two hours unable to keep anything from coming up or coming out of her.  We waited to see if this was just bad food from the night before and were able to postpone our test for later in the morning, but her situation became much more severe and it was off the the ER at St. Mary's hospital.  Thanks to Rochester Transportation Services, we literally took the local shuttle service directly to the hospital from our hotel.  Quite humorous to the ER staff seeing a shuttle bus pull into the Ambulance bay with a drop-off patient.  However, this approach got M back to the ER quickly where they were able to start some much needed fluids and assess her situation. 

After some time, M's stomach quieted down, and she was now able to rest more comfortably than before. But she still was experiencing some cramping with her stomach and couldn't tolerate much more than a few sips of water.  So unfortunately, not only were we in the ER not able to complete our tests, but 12 hours later we were leaving the ER headed back to the hotel, and not the airport for home.  Turns out that she most likely picked up the Norovirus, which does lead to the the Stomach Flu, something that has apparently been going around. 

Feeling a little better the next morning/yesterday, we woke ready to take on the day completing our tests and ready to get back home.  For the most part, we started the day okay, packed up our items in the hotel room, headed to the Clinic to be on standby for our tests.  Thankfully, we were able to get called in quickly to complete test #1 and then waited on the afternoon to come to complete test #2 and try our trip home again.  But things became difficult again as M by 2PM was at seizure number 5 and.....

M grabbed my attention to inform me that she could not breathe!  Being very short of breath, unable to breathe a normal breath something was not right.  She indicated that she felt horrible and did not know what was going on.  I was able to wheel her to a nurse to get help.  At that time M started to have a seizure that lasted a little bit longer than normal, and the nurse moved us back to a room to be evaluated. 

Bottom line, this seizure was NOT GOOD!  It was unlike anything we have yet to experience in the last 6 years and it was concerning enough that we were able to visit and meet with our team of doctors who determined that we needed to take quick action.  Her recovery was much slower than normal, and she did have a cluster of seizures with the doctor.  So with the doctor we decided to go with his recommendation of beginning treatment now, and not waiting any longer.   So we did not get a chance to come home, but rather took an Ambulance this time to the hospital and were admitted to begin treatment. 

Due to the her seizures being auto-immune, our Immunologist wanted us to come back home and begin Plasmapheresis.  But with this latest seizure, he recommended that we do high-dose steroids for the next 3 to 5 days, and then possibly move forward with the Plasma Exchange process which would be done over a course of 14 days.  So we are back at St. Mary's receiving meds and praying we'll get some good results and seizure freedom soon. 

Please send your comments and prayers! 

1 comment:

  1. I'm just without words sister. As a parent I know you want to get back to your precious little one, but you want some progress in your healing. Praying for all of you. Love you.