It's been exciting around here lately. We don't like excitement in the hospital. We like slow, boring days in the hospital. That means that the only thing that's happening is HEALING. The phrase for the last several days is probably closer to something like CRISIS MANAGEMENT.
Thursday found me hurting and feeling gross. My pain had been gradually slipping out of control, and Thursday night was another sleepless night. My nurse and I were concerned because I was taking the maximum amount of all my medications, and they just weren't touching the pain. So on Friday, I got a consult with a Pain Management Nurse Practitioner. The only downside was... he was out of town, and wouldn't be back until Monday. He agreed to talk to my nurse over the phone and come up with a plan for pain management for me. Since it was just the two of them discussing me over the phone without much prior knowledge of my history... the plan wasn't well-tailored to my body's quirks. This wasn't anybody's fault, really... I have a complicated history and several factors that make choosing medications really tricky.
The foundation of the plan was a medicine that was supposed to provide a baseline level of pain relief by staying in your system for a long time. Unfortunately, I can't absorb this type of medication due to my lack of colon! They were never able to get ahold of the guy again... to make a very long and incredibly painful story short, my pain went totally out of control on Friday afternoon, and I didn't get any sort of relief until the wee hours of Saturday morning. It was an extremely difficult night.
The doctors were very shocked at my body's lack of response to huge amounts of medication. Apparently the average bull elephant would have been comatose after all the drugs they gave me. They are also at a loss for the exact cause of the pain. I have pain in my belly, but the most severe pain is this muscle pain localized in my neck and shoulders. So weird. thankfully, the pain management NP got back in town. After another extremely trying night and morning, we have hit upon quite the cocktail of meds that should
I have a very elevated white count, low grade fevers, severe pain, and malaise. There are basically two possibilities for the cause of the symptoms: a systemic autoimmune inflammatory response, or an infection. On Saturday, Dr. Saturday decided to start me on very high dose IV steroids, which should help if this is autoimmune inflammation. He also got Infectious Disease involved to rule out the abscess seen on last week's CT scan. They MRI'd me on Sunday, and thankfully, all looked well, I think... or at least improved to the point where I don't need a drain placed. So it looks like this is autoimmune, not infection, but they really don't know for sure, and are still suspicious that there really is another abscess somewhere they can't find. They are keeping a close eye on me to make sure that I don't go septic on them or something.
Good news: I can EAT!!! I have the munchies from steroids, which is kind of fun, because I don't usually enjoy eating this much! I eat and eat and I don't really feel sick and my stomach doesn't really hurt! This is so amazing! And fun! I'm gonna get fat. ;)
On that topic... I have gained over 15 lbs of fluid weight! The swelling began even before they started 'roiding me up. I feel like I'm wearing a fat suit! At its worst this weekend, my legs looked like tree trunks, and my face is round like a pumpkin. I'm pretty sure that this is mostly a factor of poor nutrition - I've had this happen during a bad flare up. My protein levels are a little low - once they go up, the swelling will go down! My blood pressure is also running quite high - from steroids, pain, water retention... so they have to give me meds for that sometimes, too.
Thank you for your patience with me as I went on a blogging hiatus for the past several days! It has been a very eventful week, and I can't believe that I'm STILL here in the hospital.
A good friend was reminding me that I need to focus on the victories along the way. I can:
eat! Lots of food! I am less and less nauseated each day!
walk! I have been very mobile since the very first day after surgery!
Energy! My POTS is basically gone, due to IV fluids and steroids.
Excellent care! Nurses, doctors, technicians, housekeeping... hardly a clinker in the bunch!
Friends and family who text, call, visit, write, bring food (*ehhem* pretzel M&Ms, hint, hint)
God has been so gracious and blessed this hospital stay in ways too numerous to list here. I'm not sure how I can EVER doubt His goodness!
Please pray that God will allow the doctors to get a handle on what's going on with my body! That He would show us what the problem is and make a clear path for treatment.... so that I can go home soon. Please.