I have been trying to find the words for this post for a week now and am no closer than before; I was sort of hoping to have some results to post here, but nothing yet. Friends continually offer concern and support so I do want to update even without big news.
The lumbar puncture was much more intense and challenging than I anticipated. First, it started the day before – we had to go for pre-procedure bloodwork and medical clearance, which was in and of itself a debacle. We were sent to the wrong office and then our paperwork and insurance were not quite right. Once we got all of that straightened out, it took Lu 2+ hours to complete the routine testing – she was having some difficulty. I dropped her off at school, ran an errand, and then went home to nap for an hour before the kids got off the bus. The whole thing was just exhausting.
Everyone I spoke to about the lumbar puncture was very comforting – this is a routine, relatively quick procedure. They do it for babies in the ER. No big deal. I have some familiarity with the protocols for epidural and thought I was prepared. It was scheduled for 11:30AM and I figured we’d be home in time to meet Cole getting off the bus.
That was… NOT how the day went. We were told to arrive at 9AM for admitting and paperwork and whatnot. We arrived at the hospital in the pouring down rain and I remembered where the umbrella was – right in the front hall near the door in case we needed it. We made a run for it and walked in soaking wet. #momfail All of the getting ready did take the full 2.5 hours and then some – by the time she was changed and wheeled off to the OR, it was 12:30. This was where reality really started to differ from my expectation. I somehow didn’t realize she’d be in a full OR – which seemed way more REAL or something than the “quick” procedure I was prepared for. Anesthesiologist allowed me in until she was fully sedated and Neurosurgeon said the whole thing would take about half an hour. Then she would need to lay flat before going home – probably about 2 hours.
It was more like an hour before she came back and started to wake up. In a decidedly un-Lulu mood. She had a litany of complaints: the blanket was itchy, she didn’t like the “crazy bandages” (blood pressure cuff on one arm and IV in the other), she was hungry, she just wanted to Go Home. Emphatically. Honestly, in this entire 6 month journey, there are very few moments where her spirit has flagged. This was definitely a low point – she was not having it. And the poor nurse, who was being nothing but nice, was the recipient of some entirely undeserved death glares.
Neurosurgeon ended up having her lie flat for 4+ hours (something about her pressure being a little low?) and she perked up a bit with ice pops and chocolate pudding – which she declared MUCH better than the sugar-free version we buy. She was *thrilled* to finally be able to sit up – although she shared that she still was not having “the BEST time.” She requested Chinese food for dinner, which is apparently a post-hospital ritual now, and we picked it up on the way home.
By the time we were allowed to leave, we were the last patients in the surgical center. We got home about 7:00 – long after Cole got off his bus, so good thing Adam was there to meet him. The discharge papers indicated that she was medically cleared to go back to school on Friday, although she should take it easy and skip gym for a day. Thursday evening was fairly uneventful and I kind of thought we were done.
Lu was awake most of Thursday night in significant pain – and again on Friday night. She as approved to alternate adult Tylenol and Motrin and when the pain meds were in effect, she was totally fine; it was hard to convince her to take it easy and she even went to a close friend’s birthday party on Friday afternoon before accompanying me to Friday night services where she admittedly wilted. She seemed fairly improved on Saturday, though (with the assistance of Tylenol), and slept through Saturday evening. Sunday morning she appeared to be totally fine, and we had family plans on Sunday afternoon that still seemed to be reasonable.
Notsomuch. On the way to Croton, Lu complained of a sudden, significant headache. To the point of tears. Tylenol did not help, and she ended up being sick multiple times in the back seat (and on Cole) before returning home. A shower and fresh air completely revived her – and I’m still uncertain whether that was related or just coincidental car sickness.
She slept through the night on Sunday and I sent her off to school Monday morning, appearing to be totally fine. The nurse called me a half an hour later to tell me she had come down complaining of a bad headache. I was at work and reached out to my village – my friend, Nichole, buckled her OWN three kids into her car and ran Advil over to Lulu. #bestfriendsEVER Unfortunately, it didn’t help and after another half hour, she was still complaining of pain and crying. I am so, so grateful to the people I have in my life who love my family and are willing to drop what they are doing and help. It was Adam’s last full day of school and I was also stuck at work for a little while – I did make plans to leave, but I couldn’t get to Lu as quickly as was needed: Andy picked her up and got her some breakfast by the time I got home. By that time the Advil had kicked in and she was fully recovered. There was no more pain meds needed for the rest of Monday, and she returned to school on Tuesday without incident. She hammed it up as a bird in her Reader’s Theater Performance today so all is back to normal.
We don’t have many results. Most thing we already knew and have been confirmed: she does not have Lyme’s or diabetes or a major bacterial infection. We are waiting on myelin protein (I think?) results – which *could* indicate if she has an autoimmune akin to MS. We have a follow-up on Tuesday so I will keep you posted.