We arrived home from the hospital that Sunday night well after midnight. I didn’t remember much of the ride home and was very grateful to be sleeping in my own bed. Monday morning around 9:15am my surgeon’s assistant, Peggy, called me to check how the trip to the ER had gone. I told her how disappointed I was with the care I received and that I was still leaking fluid, though not very much. Peggy was going to make a few phone calls but was pretty sure the doctor would want to see me that day, so I put a wad of tissue in my belly to catch the fluid and sat down on the couch.
Within fifteen minutes that tissue was soaked through and this time the fluid was a pinkish tint, so I was officially panicked. Immediately I called Peggy back and told her what was happening. It went from a dribble to a river within minutes. As we figured, Peggy told me to come immediately to the hospital and I was to be admitted to Physician’s Referral – which helped me bypass the incompetent ER. Brent had gone back to work for the first day since my surgery and had only been there since 9:30am so I felt bad about having to call him to come get me, but I still couldn’t drive at this point. While I waited on him I repacked all my bags for the hospital because my gut instinct told me I would be there for a couple days.
As soon as we arrived at Baylor I was sent off to Roberts Imaging to have a CT done of my belly. Dr. Taylor, my general surgeon, was in surgery at the time so we waited for a couple of hours to see him. When he finally came in, he honestly looked a little defeated – but he confirmed what I’d thought all along. My shunt catheter had moved, working its way up to the incision in my navel and was pouring spinal fluid out at an alarming rate. I had been headache-free since the day after my surgery and was only beginning to get a minor one back, but at least we knew the shunt was working! That evening I was readmitted to Baylor and a revision surgery was scheduled for the following day, Tuesday, at 11:00am.
First, and most important, was to ensure that I hadn’t gotten an infection from the negligence of the ER sending me home. The incision had now been open for almost 48 hours and if there was infection the entire shunt had to come out – even the head portion. This terrified me; I’d had absolutely no problems with the incision in my head and it was healing wonderfully. When discussing my options for the revision, I was initially given two scenarios as to what would happen. So long as no infection was present, they would replace the tubing as it was; if there was an infection, they would let the shunt drain externally for up to two weeks while I took a high dosage of antibiotics. After that time frame they’d go back in and replace it. Either of these worked for me so long as I didn’t have to have my head operated on it again. I was wheeled into holding and met my new anesthesiologist, who immediately rubbed me the wrong way, but he gave me good drugs and I don’t really remember much after I got into the OR.
When I first woke up in recovery, my immediate thought was, “What the fuck, I can’t breathe!!” I began gasping for air and crying, I could NOT figure out what was wrong. Finally the nurse came over and gave me some pain meds that didn’t do a thing for the crushing sensation in my chest. It was as if I’d gotten breast implants again, the exact same feeling. I begged for all sorts of things: a drink, better pain meds, my glasses, and to have my bed raised. The only thing I was granted was my last wish, and raising the bed some seemed to take the pressure off my chest. When I was finally able to see Dr. Taylor he explained that they had moved my shunt catheter behind my right lung – and in order to do this it had to be collapsed. Bingo! There was the source of my pain. They informed me that so long as the catheter was there my lung would remain about 5% collapsed, so even as I type that is where it stands.
Just as before, I was unable to see Brent after my surgery, only this time I spent close to eight hours in recovery. EIGHT HOURS!! No one could figure out where I belonged. Repeatedly I told the nurse that I was in Truitt 309, I had been admitted the night before and that was my room, but my anesthesiologist thought I shouldn’t be in that room. See, the hallway I was in was the ICU hallway and he didn’t think I needed to be in ICU; however, the particular room I was in was a neurology room specifically for patients at risk of seizure – NOT ICU. This conversation went on for a good hour between the staff at the foot of my bed, all the while I was crying both out of frustration and pain. The fact that they couldn’t get my pain level under control was also concerning because no matter how much they gave me nothing helped. Finally around 9:00pm I was given a PCA pump, where I would be administered Morphine every ten minutes at my choosing, as well as a breathing treatment to try and help my lungs. Once I had my pain pump in place I was sent back to my room – and I was highly pissed at the anesthesiologist.
At some point while I was in recovery I had complained about the rude doctor to Brent. Little did I know he had immediately gotten on the phone with the hospital ethics team and filed a complaint. (Let me just say that I don’t remember fully what happened that day, but I do remember him accusing me of abusing pain killers and that was why I wasn’t getting any relief from the meds I was being given – among other things.) Sleeping became next to impossible the next few days and I was having some sort of allergic reaction to the Morphine to the point I was clawing myself in my sleep. Poor Brent went and rounded up all sorts of Benedryl and Gold Bond to help me out but nothing worked so they switched me to Dilaudid, or hydro-morphone. For the next three days I sat in that bed trying to breathe and waiting on the results of the cultures from my surgery to ensure I hadn’t gotten an infection. I was taking numerous antibiotics and probiotics and by Thursday night I was on my 4th IV since I’d been admitted. Put a fork in me, I was D-O-N-E.
Friday morning rolled around and my cultures were clear – no infection! There were two new incisions, one along my collarbone and one just above my navel that cut out my former belly button ring. We were given the option to stay until I felt my pain was well controlled but when that 4th IV blew later that morning, I opted to leave. I was sick and tired of the hospital and just wanted to be home in my own bed. Four days in was way too long for me and I wanted nothing more to do with the place. Brent ran a couple of errands that morning while I packed up my room to the best of my abilities. There were clothes strewn about and toiletries all over the bathroom, it was like we’d been living in a hotel for the last few days. When the orderly came to get me I loaded up a rolling cart with all my belongings (and my four pillows I’d brought) and finally got to go home.
When I walked in my door at home I cried. The dogs had been left out of their crates while we were away and not been let out regularly so they had messed all over my carpets (we had someone watching the house . . .) To top it off, Stormy, our German Shepherd had taken it upon herself to piss on our bed, in my spot. I just couldn’t take it; I thought I was going to lose my mind. Brent took all of the bedding off and moved our extremely heavy memory foam mattress off the bed and pulled in the mattress from our extra room, made the bed and put me in it. Sleeping was ridiculous as I couldn’t get comfortable on this soft mattress and I really wanted our memory foam back. Thankfully Brent was able to stay home with me for another week and make sure I was okay – plus, we’d gotten LB that Sunday after I came home and I was in no shape to care for him by myself.
It has now been six weeks since that revision and I am still having severe pain in my lung that radiates to my shoulder. After much discussion it was decided that I would have another revision to move the catheter back to my belly, only this time a little lower near my pelvis. My last MRI showed that my ventricles had disappeared and were being drained too well, given me low pressure headaches and causing the intense pain. Every time I took a breath the fluid would be pulled out due to suction instead of draining on its own. So as of right now I go back in first thing Tuesday morning to have the revision. It has been a long journey but I think I see the end. Hopefully this one will go much smoother and I should only be there a day – no collapsing of the lungs this time! Never have I been so anxious to return to normal, and I cannot wait to get back to work.
On a separate note, I will say that I have got to spend this last six weeks home with LB (he’s been here the entire time) and he’s progressed quite nicely. He is now fully potty trained with the exception of nights and he has just grown so much. I’ll be sad to see him go this Sunday but grateful for being able to recuperate alone.
Until next time, KC