It’s been a week since I wrote Kiss it and make it better, please and I’m humbled by the outpouring of concern over social media. Folks that I only know through the ether reached out and gave me a ton of support that I never expected. I didn’t write the post for that purpose, I really wrote it because I had to do something.
Unfortunately, over the past week I haven’t been able to do much. Most of the time, she’s been laying on the couch, curtains drawn, in as dark an environment as possible. We’ve had a trip to the ER (again) for a lumbar puncture. The goal was to rule out an infection of her spinal fluid. The secondary goal was to try and get the week-old persistent, debilitating headache stopped.
After several hours in the ER, she was a little better, and reported that her pain that she’d been rating a 10 since I got here was down to a four. Remember, this is the young lady who doesn’t really acknowledge pain. It’s hard to get that across to medical folks who are inundated with overinflated claims of pain. When she said she was at a four, I commented to the med folks that her four translated to an eight for normal folks. They asked if I was being serious, and when I said yes they stepped things up a bit.
Quite honestly, I’m still very frustrated. I’m used to the pace of medical care. Being married to a doctor for 29 years (!) helps you understand all the things that physicians do outside the tiny bit that patients see in the office or at the hospital. That aside, it took us four days to get the go-ahead for the lumbar puncture that was indicated, in stark relief, on Monday. Even I knew that was going to be necessary. We are now waiting for calls back from three different doctor’s offices. We have an appointment with one, the infectious disease doctor, but it’s not until Friday. That means four more days of waiting. And the waiting is not being accompanied by any significant change in her status.
She still has serious headaches, her back is spasming frequently, she’s nauseous, and any activity wears her down. When I say “any activity”, a trip across her tiny town home requires a moment of rest. A trip to Wal-Mart almost did her in yesterday. We only went on her insistence that she needed to…you guessed it…do something. The nut doesn’t fall far from the tree!
I had hoped that she would be on the mend and I would be headed back to Kansas today. On Monday she went in to work for the annual sales kickoff meeting where she works. It’s a 20 minute drive away, and rather than risk her not being able to drive home later, I drove her to work. She wasn’t joking when she said it was hard not to love the views!
After dropping her off, I drove back to her town home and showered. Then I sat on the couch, phone in hand, expecting the worst. At 10:15 she called and said she couldn’t make it through the day, not even through midday. So I jumped in the car and drove over to get her. She looked bad, really bad, when I picked her up. Since then she’s been on the couch sleeping and medicating, except for the disastrous trip to Wal-Mart.
So, rather than driving back to Kansas today, I’m staying with her until at least Friday. At that point we’ll make a decision as to whether I’m leaving or staying. Coupled with that decision is whether she’s going to go back to Kansas to recuperate for a while. The advantage is that she would have a lot more care-givers and the temptation to go into work wouldn’t be there. On the other hand, Hectic Manor is, well, hectic. We simply don’t know if the additional activity would help her healing or string things out.
Thus, two days short of two weeks from the onset of this illness, we’re really not a whole lot better off. We know a tiny bit more about what made her sick, but we’re completely unclear as to how long healing will take. We’re asking questions of the infectious disease folks, the neurology folks, and the primary care folks. No one seems to really have a handle on whether we’re looking at a few days of recovery (unlikely, based on her progress or lack thereof) or whether we’re looking at months.
As you can imagine, talking to a 23 year-old about months of recovery is a tough thing to do. Talking to my 23 year-old about months of recovery is devastating, emotionally draining, and terrifying.
That’s where we stand…in limbo between a once-healthy girl and a future healthy girl with no idea how long the process will take.
I wish I could just kiss and make it better. I wish that I could take all the pain into my already old and broken body and let her get back to her active, healthy, fun-filled life. But neither avenue is open to me. I’m stuck here, still wanting to do something everyday, and having to assuage those desires with making meals, washing & folding laundry, and watching over my sick baby.
I’ve said it before, but it bears repeating. It’s hard being a parent, and it certainly doesn’t end when they grow up and move out of the house!
I’m glad that a diagnosis is at least a possibility, but the idea of months of recovery seems so daunting. I totally understand how hard it is for medical staff to understand those of us with a relatively high pain threshold. I was in the hospital with a broken finger and told the ER nurse that the pain was a 6. I went on to explain that I assumed childbirth was a 7 because that experience wasn’t nearly as painful as I had been led to believe. At no point did I feel like I was dying, although snapping my staples post-C-section walking to the NICU was close to an 8. She gave me some pain meds after that. (I didn’t take them. I was still planning to go into work. I had 9 other fingers to type with.)
Sadia, you would definitely fit in well with the Hectic Clan. I’m the wimp of the bunch, but everybody else has ridiculously high pain thresholds. Hectic Mom gave birth to H23A&B and they had to stay in the NICU because they were 8 weeks premature. She took a day off from work, then went in. She figured she could be by her babies and would be able to save her leave for when they came home.
Every day has been a rollercoaster, but we’re making it through. Managing Hectic Manor from afar is a bit daunting, but we’ve even figured out ways to do that. Being the main cook for the house has posed their biggest issues…they’re not used to having to do meal planning, let alone preparation.
Make it a great day!
I’ve read some stuff on moms of multiples having to be made of tough stuff just to make it through the extra demands of a twin pregnancy. If you or Hectic Mom would ever like to write about your twins’ birth and NICU experience on HDYDI, we’d love to have you! I’m fascinated by what things have and haven’t changed in high risk pregnancy and NICU care over the years. Our experience was only 9 years ago, but already I feel like a dinosaur. (And I’m grateful that it’s so far behind us that those memories are in the background. I would have never imagined how small an impact being premature was going to have on M and J. They’ve overcome it all.)
Healing thoughts to your not-so-little one. I suppose one positive to come out of it is a greater appreciation for your cooking?