A Bump in the Road

More Surgery

On Friday morning while still at the hotel, I got a call from Haley saying that there was a problem and that she might need another procedure. It seems that the pressure of her cerebral spinal fluid (CSF) was too high and that she had also developed a leak in the covering of her spinal cord/brain so that the CSF was leaking. She had two drains still in from her surgery on Wednesday, one in her mid-back from where they took a piece of rib and one in the back of her neck near where he had done the fusion. These drains look like hand grenades and they are squeezed by the nurse and capped to allow for gentle suction which removes any fluid build-up from the incision site. Anyway, the one near her neck was draining straw-colored fluid (and lots of it), which they assumed was CSF. This is not normal or good.

The decision was made to take her back to the operating room and place a shunt that would go from her lumbar spine to her abdomen. Her pressure was too high because Dr. Henderson said that this is common in 30% of people with EDS. He also noted that her pressure was high on Wednesday when he did a spinal tap at the beginning of her surgery (23 for those curious among you-normal is 12).  We had a lot of questions for Dr. H, like, "if she has a leak, why is her pressure high?" And,"why does she have a leak?" And, "what are the risks?" And...you get the idea. Dr. H calmly answered all of our questions, but by the time the decision had been made to operate, Haley had started eating her breakfast. (She didn't know she was going to have surgery--no one did and they brought her a tray.) So, surgery was scheduled for 4 pm.

Dr. Henderson stayed at the hospital doing all the paperwork and ordering all the appropriate pre-op tests, and then he left for the office (about 25 minutes away). Poor Haley had a terrible headache that was worse when she sat up, so she laid flat all day and was on pain meds. This was really discouraging to her (and us) because she had had such a good day the day before with no headache and walking to the bathroom without fainting, etc.

Well there was a big storm in the area on Friday evening, and the traffic was bad on the Beltway (not an unusual occurrence according to the nurses) so Dr. H didn't get back to the hospital as early as he thought and she didn't go to the OR until 5:30. We went and got dinner in the cafeteria per doctor's orders, and then we waited in the waiting room. He thought she would be out by 8:00. By 9:30 I was in full wig-out mode. Besides, the last time we were in that waiting room, we were surrounded by family, which was a great comfort. This time, however, the three large flat screen TVs were blaring but they were all tuned to different stations! I thought I would lose my mind. When I considered standing on a chair to change one or more of them, I glanced around to see that someone was watching each one. Then, to make matters worse, there were a couple of kids who decided to run around the large waiting room chasing each other screaming. At random points, the mothers, who apparently didn't know one another, called out the kids' names, which they totally ignored and which only added to the noise. While these "ferrets on crack" ran and ran, I tried to distract myself with Solitaire on my phone, a large print Readers' Digest, Facebook, and anything else I could think of. I was able to control my tongue (yes, really) and not say anything. Good times!

Mercifully, they departed and we were left alone. Larry did stand on a chair and turn one of the TVs off and we continued to wait. Finally Dr. H came into the room looking a bit sheepish. He said that it went well, but that these shunts are "rather tricky to get just right" and he sort of apologized for the length of time it took. (I must have looked frazzled!)

So, we told him to get some rest (his day was as long as ours had been with a lot more physical and mental energy expended), and he left. And guess what we did next? That's right...we WAITED some more until the recovery room nurse came out and got us. By this time it was 11:00. Dear Haley looked rough around the edges, but was able to speak to us and tell us she was OK. We sat at her bedside in the Recovery Room for a bit and Larry started falling asleep in the chair. It was then that we kissed her goodbye and left for our home away from home.

This morning (Saturday) I mentioned to Larry that this has been like a roller coaster ride. It's been years since I've ridden on one, and I don't plan on doing it any time soon (or ever), but I distinctly remember the type that has a big, steep hill and then on the other side, there's another smaller hill. That's exactly what yesterday felt like. I hope it's smooth and calm from here on out. Actually, I hope she (we) gets off the bloody thing for good!