The ordeal-part 4

When last I posted I was headed home for some much needed and anticipated rest. My mom and Aunt Kristie had headed to their various homes to do a few things that needed doing in their lives. I was left in the very capable hands of my cousins Lacey and Ashley. They marched in and took over all child care, house cleaning, fun having, and they made me rest a lot. We had a fairly quiet weekend and I was even starting to get pretty stable walking around.

My mom and Kristie returned on Monday and I mentioned that I had a lot of sinus pressure and was worried I might be getting a sinus infection. (A fairly normal complication of pit surgery) I had an ENT appointment scheduled that Monday morning with a local and respected ENT.
My mom and I went to see the ENT who squirted some numbing solution into my sinus and cleaned out some of my sinus cavity. He said everything looked fairly normal, but he gave me some antibiotics to take just in case.

Later that evening I started tasting a lot of salty liquid dripping down the back of my throat. The next morning, I sat up and salt liquid was dripping out of my nose. I took a deep breath and called the ENT again. I told them I thought I was dripping cerebral spinal fluid from my nose and I needed an appointment as soon as possible. Kristie drove me to the appointment a few hours later. Aidan was not too keen on me going to the doctor and he cried a bit. I told him, "It's not the hospital, I'm just going to a regular doctor, then I'll be home." He looked at me suspiciously and said, "Mom, you've got one hour!"

The same nurse tried to spray the numbing solution in my nose, but I told her no I wasn't going to do that. She kept telling me they had to and I said, I wouldn't have anything up my nose until I saw the Doctor. When the doctor came in he had me bend forward and try to drip fluid into a cup. I got a drip within a minute. He swore and said he needed to make some phone calls. He was back about 5 minutes later and told me I needed to go directly to St. Raphael's hospital in New Haven and I would be a direct admit to the ICU and would meet with a team of Neurosurgeons there. They were so anxious to get us out of there that they said, they would call our cell phones along the way if they needed anymore info.

I was a little bit teary eyed on the way to the hospital. Kristie was so sweet and kept telling me "It's OK to cry and be upset." I just felt like I had to keep it together. We called my mom along the way and she said, "No, I don't want that....just don't go!" We were all pretty bummed. I had only been home for 3 1/2 days.

I arrived at the hospital and was sent directly to the surgical ICU. Kristie and I had to wait a number of minutes before anyone paid any attention to us at all. Finally someone looked at me and I told her my name, and she laughed saying they didn't realize I was a patient because they never have patients walking and talking to be admitted. I was taken to a room slightly smaller than the ICU at Yale and the flurry of activity began. I was asked a million boring and personal questions, I had to change into a gown and get in bed. (However, before I did, I told my nurse I was walking to the bathroom like a normal human. She said, "Well we don't really have a protocol for that so you should wait for your catheter." I told her, she could walk to the bathroom with me or watch me go by myself. All the nurses decided I was "fiesty" I told them I was just grumpy.

I told the nurses over and over again that I needed my hydrocortisol at 7:00 AM and at 2:00 PM and that if they weren't on top of it, I did have some in my bag and I would be dosing myself. I told them I did it at Yale and I would tell them I did it, but I wasn't waiting for any medication. They cringed a bit. (Once again, labeled fiesty.)

I was taken on a gurney to have a CAT scan just to make sure there was no bleeding anywhere, and then taken back to my sterile prison. (Kristie was still there and decided it was the ugliest hospital ever, and they wouldn't allow live flowers, my TV was fuzzy, and they were very strict about visitors.) I was keeping in fairly good spirits, but kept telling my nurse I was tough until I saw my husband and then I always cried. Since Kristie was still keeping me in good humor we were fine.

About an hour later I met with the first neurosurgeon who told me the "good news". They were going to place a tube to drain spinal fluid in my spinal cord and let the pressure equalize for 5 days to see if the dripping would stop on its own. They would let 10 ml an hour drip (same as before) and I would have to stay flat on my back. "What if that doesn't work?" I asked. "Well, at that point we would have to do a revision on your original surgery." he said. So I found the good news a little less depressing. I asked why I would start leaking now, and he had a couple of theories... the pressure from the airplane flight home was too much, I lifted something to heavy, it was a bad patch to begin with. Then he quickly and quietly asked if I had any leaking at all before going to see the ENT. I told him, "No". He was really quiet and asked me not to see that doctor again. I kind of think I got his real opinion....

The nurses came in to prep me for my "small" surgical procedure. Jason had shown up by this time. As soon as he showed up, I started crying. I think sometimes you have to be strong until the real strong one shows up. I started crying because I had told my darling little 5 year old that I would be right back and I was done with the hospital, and here I was committed to at least 5 more days.

Those crazy anesthesiologists insisted on doing a pregnancy test before the surgery. I told them, I had been in a hospital for the past 2 1/2 weeks and my husband wasn't stupid. They laughed and made me do it anyway.

I had another small blessing right before surgery. A phlebotomist named Carol Ann stopped by to take blood levels fore the surgery. She peeked in my room and said, "Alicia, what are you doing in here?" She had been the phlebotomist who worked midnights for the past year and we got to be friendly when I would come in for midnight blood serums during the diagnosis process. She had just been moved to evenings and she told me about how she had been sick for over a year and couldn't walk and how she had an angelic friend who bathed her every day and got her kids ready for school.

She then turned to Jason and asked, "How are you doing darlin'?" I don't think anyone had ever actually asked him that. We were both so touched. She said, it is so hard to see someone you love like this and to be in charge and have to keep up a "normal" life. She assured me I would be fine and to come and visit when I was better. I didn't see her again my entire hospital stay, but I truly believe I saw her then because we needed her.

I was wheeled into a freezing operating room, given something to help me sleep and I woke up with a headache and back spasms. Once again, Jason had been left in the waiting room for much too long a time. They told him it would take about an hour and 2 and half hours later the surgery was over. (Apparently, I have a strangely narrow spinal column and they told me they had to "beat me up" quite a bit to get the drain in.)
It was almost 10 pm by now and Jason wasn't allowed to stay the night, so he headed home and I began my 5 day vigil.