The Ordeal part 5

I laid like a good little patient on my back for the next 5 days. I watched movies when I felt up to it and slept a lot. (I was having some serious back spasms and was on Valium so I could count on a couple of good naps every day.) My nurses were fabulous, and at St. Raphael's unlike Yale, they give you the same nurses every day they are available. What a wonderful group of nurses! They kept me clean, happy, well-drugged, and snuck my kids in a couple of times to see me. (No one under 12 was allowed on the floor.)

On the 6th day they sat me up about 40 degrees (which to me felt like I was standing up) and gave me a cup and said let's see if you leak....Sadly enough.. I did. One of the Neuro PA's took the cup and things started rolling for another surgery. This time a CSF (Cerebral Spinal Fluid) Revision. My darling nurse Brittany came and sat with me while I cried a little bit, and she got teary, and then said, "Well, at least we get you for longer."

In some ways I was lucky because the best ENT was available that day and wasn't for the rest of the week. The other good thing was that as soon as my nurses heard I would be around for quite a while longer, they switched my room to one that had a TV in good repair. Sounds lame, but every little thing is exciting when you are on bed rest.

I called my mom and Jason and both sounded pretty dejected and resigned. Jason rearranged patients for the rest of the afternoon and he and my mom came over to be with me while everything was prepped for a 2:00 surgery. As we were told the problem with a revision is that the surgeon never really know what the prior one did and they don't like going into an unknown.
This neurosurgical group decided that they wanted as much of a visual field as possible so they decided they would cut the skin right under my nose and peel the skin back so they could see a lot more. Pretty gross, but they thought they would have better luck that way.

Around 2:00 I was wheeled back into the surgical waiting room. My mom and Jason were able to stay there with me right up to surgery time. We were all a little weepy at having to do this again. Jason was promised that this time someone would come and talk to him about the surgery immediately following the surgery. They gave him a 4 hour time frame. I was anxious about the CSF headaches coming back, but otherwise in as good of shape as possible.

I was wheeled into the ER and the ENT came in and put on "Phantom of the Opera" and was singing along to it. I told him that was my least favorite musical ever. He chuckled and said if I could sing to it he would change it. So I sang right along with him and he asked me what musical I preferred. I told him "The Fantastiks" and I fell asleep to "Try to Remember." Much better.

I woke up briefly in a CT room. Apparently my pulse had dropped very low unexpectedly during surgery and they were checking for blood clots. The next thing I remember was waking up in my room in the ICU with my nurse Brittany and Jason. My nose was packed and oozing and I had a whopper of a headache, but the surgeon came in and said everything looked OK. They found a secondary leak to the one I originally had and so to fix everything they took a piece of my septum and wedged it in between 2 pieces of cartilage, took a piece of fat, some duraseal (basically surgical glue) another piece of fat, and more duraseal and packed my sphynoid sinus completely. I am told I will never miss the back of my septum and I can't say I have to this point. I was still plugged up to the drain and would be flat for another 5 days.

Pain management was much better this time around. when I wasn't getting a lot of relief from Morphine they had me take Percocet and that helped immensely. The next 5 days passed as slowly as the previous 5, but adding in the pain medication I slept a lot more.

The ICU became fairly homey in its way. These are the things I will remember about my various stays. Someone is always up, the respirators make sounds like someone is playing the oboe, tiny taps of people walking quickly up and down the halls, that darn curtain being thrown open so someone can come in to take more blood, check your levels, or answer your call light, quiet conversations, gentle nurses hands, and wanting to go home so badly.

5 days after surgery I had my nasal packing removed. I have been told by many a friend and relative whose noses have been broken that this is the worst experience ever. I demanded that I be doped up before they did it. The on call ENT said, "I don't really hear complaints about it." I asked her if she had ever had it done. She admitted she had not, so I said, "I'll wait for some drugs." My darling nurse Cindy gave me some morphine through my IV and we waited a few minutes and then had the packing pulled. I'm so glad I wasn't all the way "with it" for that. Pretty horrid.

6 days after surgery, I was sat up again to watch for leaks. I was petrified I would leak again. But we waited and waited and the day passed with everyone watching and waiting. On the 7 day, the Neurosurgeon decided we were successful and in a highly anti climatic moment they pulled out the drain. Of course, they then told me I had to stay on my back for the rest of the day to keep pressure on the drain site! I stayed in the ICU for one more day as they monitored and got me up to walk (that was fun!) and then I was transferred to the regular floor for one day to irritate me!

I'll post about my homecoming next, but the medical saga for now is over. I'm hopeful we don't have any more adventure for a long time coming. Recovery is slow and frustrating for someone who wants to run a million miles an hour in every direction, but I am trying to pace myself, and when I don't, my body does it for me.

People keep asking me if I would do it again, knowing this all would happen. Of course I would. What choice did I have? I could live with a disease that slowly killed me or I could be brave enough to jump at a chance to live my life in a healthy body. I took my chance, and it wasn't the easiest course, but it is still my first best chance. My Aunt Kristie told me that one of my Grandpa's favorite things to say was, "When I get something, I really get it!" I am his granddaughter after all!