Update--May 2016

April Showers did not bring May flowers for me...sadly. I've been in a rough patch lately, as many Chronically Ill people experience. Upon release from the hospital on March 11, 2016 I never really bounced back. The regimen of 3-4 Boost/Ensure a day was too much for me to handle and became less and less as the days passed until it became nearly nothing. And then hospitalization. 

Again. 

Nobody WANTS to be hospitalized, but sometimes you get a feeling that the hospital is the only place you should be. On April 22nd, that's what happened. My General Practioner decided the hospital was best and in I went. Two days in, the NG tube was placed. Two days after that, the PICC line. Clearly my situation was not improving. 

And this would be the strangest hospitalization I've ever had. 

From the time I got sick in 2010 I was given phenergan to help combat nausea and vomiting. It's always helped better than zofran and I've NEVER had trouble with it. This hospital visit, that would all change. Almost from the first time I was given it this hospital visit, I would begin to feel as though I needed to stretch but, no matter how much I stretched or which way I moved, the feeling never left. Then I would get itchy and fidgety. It was making me crazy! So they gave me Benadryl...the feeling left. The next night, it happened again, so they gave me Benadryl again...and Xanax. And the feeling left again. When my PICC line was placed, the dance continued...flush, phenergan, Benadryl, flush....I CANT BREATHE!! I grabbed my nurse so quick!! The rapid response team was called. An oxygen mask was placed. Ativan was pushed (apparently they thought I was having a panic attack or something. I wasn't. I promise you that.) I finally could breathe again. 

I am now listed as ALLERGY:: Phenergan 

To add to the oddity of the stay, though not terribly surprising, my blood pressure never broke 100. My baseline is 92/53. My blood pressure was 84/45, 73/35, and the like while in the hospital. Nobody had any answers for as to WHY my blood pressure was acting this way, so it still remains an unsolved mystery. 

Thankfully, after eleven days, I made it home, albeit with a PICC line and needing to use TPN, but home nonetheless. The veins on my left hand/arm are shot from either IV sticks or potassium and phenergan use, so the poor phlebotomists have their work cut out for them every time they draw blood--which is twice a week at this point. My arm looks like hamburger and feels like it's been run over, but with three heat packs and a few sticks, it MIGHT give a little blood. 

I'm hoping for the best in the coming months. My UCLA visit got moved to June 14th with the colleague of the original Doctor I was referred to see. So hopefully that goes well. I'll keep you posted. I don't know what I'm expecting when I go, but I'm going!