Iam back...from the hospital

[eternaldisneyfan]

I just got back from UCSF PICU. I went in for a gram positive staph epi infection in my port (same one I had last month). To make a long story short, the original lab result was a false positive But while I was there, they decided to take out my port. I had been using it for supplemental IV nutrition because of gastroperesis and a slow/bad absorption gut. I say "had" because for the last month I have maintained my weight without IV nutrition. The thing that has really helped my gut is poi-a traditional Hawaiian food from Taro root. It has really helped all my digestive problems.

Anyway, I was so nervous about surgery. My last surgery resulted in a 189 day (6 1/2 month) hospital stay. Even minor surgeries are bad because of anasthesia which permanently damages my lungs and knocks my gut out for three days. Also my contractures and positioning make it very hard to get to me in bed. Ideally I wanted to do surgery in my chair, and deep numbing/sedation. I was really impressed with the anesthesiologist. He listened to all my concerns. He said we could do surgery in my wheelchair. I just tilted and reclined some. He also used deep numbing, sedation, and a little disassociative anasthesia. He even used my home vent. I had zero complications. I didn't even have nausea. I was just really dizzy and got a killer headache. My pain was easily managed (another problem I've had). Before I left I also got my gj tube replaced. For those of you who read my "help! conflicted about going questions/concerns" thread, you'll note that two concerns were my port getting infected and the gj tube.

I am even more interested in going to disney world now!

Christamae

 

[skoopman]

Although you ended up back in the hospital, I am glad it was a false positive. My DD's last hospital stay was a three day visit due to a false positive staph test result of her central line. If you do decide to go to WDW, I hope you have a wonderful time.
Suzanne

 

[SueM in MN]

Well, that sounds like a good hospitalization.
Staph epi (Coag negative Staph) is sometimes hard to tell if it's an infection or the sample got contaminated as it was being taken (Staph epi is part of the bacteria that normally lives on the skin). It's good that you don't need to have the catheter anymore though - one less thing in the way of you going to WDW.

 

[dclfun]

I'm so glad you wrote- I had been worried that you'd had an illness or complication after not "hearing" you here on the boards for awhile. I too had a port removed with local anesthesia and very little resultant pain since they're really only going under the skin. I'm on my 4th port due to sepsis I had from the last one ( I know what you mean about long hospital stays) and remembered what it was like to have one inserted under a local ( which was horrible) but the removal was a piece of cake. Sounds like you made it through a tune up and now have another 50K miles to go without another issue! Happy planning!---Kathy