Saturday, April 23, 2016

Hello out there!

So Tuesday was the big day! We got to Barnes about 845 bc I had to give Dr. Patterson a copy and of the PET scan from Friday. They took me later than 11 I think, but I don't remember exactly what time it was. I did sign up for a clinical trial where they took blood and path of their own tone tested. Anything to try and help figure this mess it out!

I don't remember much of rolling in to the OR but I hear it really didn't take long. 4hrs?? I remember being in the ICU and them tying to extubate me but I kept biting on the tubes and would desat. I was also gagging on the tubes so I'm not sure what I wanted to keep them for! I had to stay one night in the ICU because of the difficult time the had, but am not there now!


That brings me to Wednesday. I was moved to the step down unit. It was more like an old ICU in that there were not doors, just curtains. The ICU was much nicer! I stayed there for a day and then was moved to the floor. Thank goodness we had already put in for a private room! So here it is Saturday already! I have had my art line removed and my peripheral hand line removed so I only have the central and my power port (which has not been accessed). I still have a primrose? Drain by the midline chest incision, a chest tube on my right side which is not putting out more than 50/hr if 8 heard correctly, and my g and j tubes. Tube feeding started in the step down unit and are fine so far. It's going I pretty slow. I have a thoracic epidural, and it is wonderful! I don't hit my button very often and my pain is usually 0-4! Catheter was removed in step down too so I'm walking to the bathroom and doing daily PT. I was on O2 until yesterday morning. Just couldn't keep my sats in the 90s.

As far as I know I will be in this room until discharge. Not sure of a date yet. I have my swallow study on Monday and will HOPEFULLY GET TO DRINK SOMETHING! Not at all the least bit hungry but I would kill someone for water or ice! ;) hahaha! The nurses have all been very nice.

Thank you for all the prayers, calls, messages, and visits! Prayers are being answered! I will let you all know the pathology as soon as I do and whether I will go another round of chemo or not.

Love you all!

Thursday, April 14, 2016

Not what I expected...

I met with Dr. Patterson yesterday...things didn't go quite as planned. First I actually met with anesthesia. The nurse informed me that they would not use my port for surgery because it wasn't good for "resuscitative measures". Who are they going to be resuscitating?? Let's just say that this wasn't the only surprise! The resident said I would have an IV to go to sleep but I would probably wake up with an Arterial line and maybe another line. I will have a thoracic epidural for pain control. I will most likely spend the first night in the ICU or the step down unit. They drew my blood work and sent me to the doctor.

Dr. Patterson came in, sat down, and asked how I was doing. I said the nausea was better but I was still tired. That's when he told me he thought we should wait a week. WHAT?!? He said I have to be at the top of my game going in to this surgery. I should have explained that I had worked 3 out of four days in a row and was just wore out. We decided that I would see how the PET scan went and talk with Dr. kosuri Friday. I will get back with him then as to whether or not we proceed or push it off a week. Now my allergies are hitting and it might not be such a bad idea. 😩

As for the surgery itself, we discussed the abdominal mesh and the Peg tube. He said he didn't think the mesh would be a problem for the upper abdominal incision but that he couldn't put a tube or button through the mesh. 😳 Ok, then what?! He never said. Um...

Needless to say I left with more questions than answers. I fully trust Dr. Patterson and have heard wonderful things about him but people have rearranged their lives for next week and I don't know that I could emotionally wait another week. I think I would just sit and obsess for the next week and a half! I want to be able to get this done! Today I got the kids off to school and didn't take a single nap! Let's pray everything goes as planned, if it's meant to.

And I'm going to kick the next person that tells me how BIG this surgery is. I'm aware.