Thursday, November 14, 2013

Update (155.0)

Counting down to surgery. We go to St Louis Monday to see the surgeon and anesthesia team (day trip). Then all of us go on 11/21 to have the picc line put in. We'll stay the night and then her surgery is at 6 am on 11/22.

We are taking Luke and my mom with us. They'll probably stay through Sat or Sun. I don't want him missing too much school or going too stir crazy. Sophie will probably get to go home 11/26 or 11/27.

My mom being with us so much is causing me some anxiety. She hovers, she has OCD (like I do, so I get it, but she doesn't really understand that she has it and doesn't even attempt to reign it in), she is probably one of the most negative people I know. She drives Mark nuts. The fact is, though, I need her. I need her help with Luke. I'll need her help with Sophie when I start the new job. I'm going to have to take lots of deep breaths, repeat the serenity prayer constantly, be very patient, and figure out how to help Mark deal with her (of course, he's a big boy and is going to have to figure it out for himself, too).

Sophie's spine continues to move a lot. Her ribs on the right side are getting closer to her hip bone. When she lays on her left side, she can feel her rib close to her hip. She's having more pain/tension in her back. I am so so so thankful we are getting this done now.

I'm hanging in there, but I am feeling the late fall funk (using my SAD light but it only does so much). I have had a lot of intrusive thoughts in the past month; I think stress stirs them up. I met with my psych nurse practitioner on Monday to see if a medication change would help. The meds she thought would help these OCD thoughts (zoloft and luvox) are ssri's and cause weight gain. Luvox has other crazy side effects, like magnifying the affect of caffeine, and I am so not giving up coffee. And I'm not taking another SSRI that causes weight gain. Anyway, I'm keeping my meds the way they are and just trying to deal.

Re: insurance. My new job's insurance doesn't kick in until 30 days after my start date, on Jan 9. That was going to mean either we have health insurance exchange coverage for 9 days (assuming we could even get signed up for it) or we go without insurance for 9 days (which is really not an option). BUT. I got a letter yesterday from the state health insurance plan that they are extending coverage until the end of January. This is a HUGE load off my mind. I don't have to worry about struggling with or struggling to cancel on Jan. 9 and hoping they'd refund 21 days of not using the insurance.

Re: new job. Anxious and still feels completely weird that I'm going to be working somewhere else. I don't know my schedule yet other than the first week. It's not an 8-5 Mon-Fri job. I'll have to work a night or two and some Saturday's from 9-1. Until I'm trained, I'll be working when my manager or the other FA is working so I can shadow them. Primary issue with the night time work is that I'll probably have to give up my Monday OA meeting or Thursday choir. I can't have more than two late nights a week. But who knows. Weeks I work on Saturdays, my manager said I won't have to work an 8 pm night. If I can get a 7 pm night on Monday or Thursday, I can still go to OA/choir, and just be 15 min late. We'll see.

We are putting up Christmas decorations this weekend, since Sophie wouldn't be able to help after her surgery. That should be fun. And the house will be cheery when we get home from the hospital. We obviously aren't going anywhere for Thanksgiving. We always are with Mark's family, and this year it's in Indianapolis (sister in law and niece in law live there). It's disappointing we'll miss everyone, but that's life. My friend Amy is going to bring us dinner, which is awesome. She's in OA too and knows what I can eat.

My food is still not great. No binge-foods but still way too much processed, convenience foods. I've screwed up my taste buds, I think, and I've definitely gotten in the lazy habit of not cooking. This isn't a great time to be making major changes, so I'm working on making small ones. I haven't carved out time to exercise either. When the heck I'm going to fit that in after I start the new job, I have no flipping idea.

Anyway, I'm ok, not fabulous, but not in a pit. I'll post after Sophie's surgery to let you know how she's doing. Thank you all for your prayers and positive thoughts for her. They mean a lot!


Vickie said...

Honestly, I cringe just thinking about her spine shifting. My husband is curious what they are actually going to do with the surgery. If you said specifics in another post, just leave me the link and I will go back and read it to him.

Gordon's has LOTS of frozen veggies and fruit. It is all flash frozen, so it is loose in the bag, not clumped.

Laura N said...

Definitely cringe worthy.

That's a link to her surgeon's page, a case study that's close to Sophie's spine. Sophie's is worse on the top than the bottom (compared to the case study), and he expects to fuse from T3 through T12 or L1--at least, that's what he had decided back in October. If he gets in there and the lower curve is worse that it was, he may have to go lower. Praying he won't b/c the less lumbar he fuses, the more flexible she'll be.

They put a rod in her spine (I thought it was just one--we saw a model of a spine and I was thinking it was one, but the case study xray looks like it's two. I'll have to have them remind me Monday), attach it with brackets and really hefty screws, then overlay pieces of bone which then knit together with her vertebrae. They use cadaver bone (creepy, I know); they used to harvest bone from a patient's hip, but that caused more pain than the spinal surgery.

The doctor makes sure her shoulders and hips are aligned and even as part of the process of straightening her spine.

The rod acts as a cast; the bones knitting together is the actual fusion part. I think it takes 6-12 months for the bones to completely fuse together. Those vertebrae won't grow anymore. Her growth will come from her legs and the vertebrae they don't fuse. She'll gain some inches once they straighten her out. She's 5' 1 1/2". Will be interesting to see how much taller she is after. She's excited about that part.

GFS is a great idea. We have one here.

katie said...

She's going to be so much better after this medical attention and surgery, PT etc.

You will look back and wonder why you didn't do it sooner.

Vickie said...

Freaking out?

Laura N said...

Little bit, yeah. Details from the anesthesia doc made surgery VERY real. but also reassuring that they can manager her pain. the nurse said kids typically go home in 3 days (!) so we should prob leave hospital Monday or at the latest Tuesday.

she'll be in ICU until Saturday afternoon or evening.

so much to do before we leave. I'm packing us all in backpacks. We will each have one (except Sophie, who will just have suitcase) so we can be mobile each day. hard to plan who's staying at the hospital which nights--we are taking it as it comes.

issues with insurance saying the hospital is out of network (which it's not according to Anthem but according to ICHIA--state health insurance--it is...freaking unbelievable that I have to spend time on this crap).

worried Sophie may get sick this week with strep or virus since I was sick Friday and Mark was Sunday. If she's sick they can't operate. I am wiping down door knobs, toilet handle, sinks, counters with anti-bac wipes, and lecturing everyone on washing hands. and praying she stays healthy.

my OA sponsor told me to just let it all go. I've done my part, now I have to wait and let God do the rest.

Laura N said...

not sure if I wrote about this or not. we are waiting to see if Ronald McDonald house has room for us--can't submit a request until 3 days before surgery. so we'll see. we do have a room at a similar place called Haven House. not free, but only $50/night and it has 2 meals a day, shuttle to hospital, family room, big gymnasium. even if mark & I don't spend a lot of time there, it will be a good place for Luke. he and my mom will be with us the whole time.

Vickie said...

Sounds like good room options. You might need both.

The Ronald rooms here are mostly (and maybe all) tiny rooms with single beds and small bathroom and one chair. Not hotel room like. I have pictured one parent crawling in bed while other stays with child in hospital room and then they switch. They are located in the hospital, right down hall from peds, so very handy.

I wondered about you all day yesterday.

Take Chapstick, hospitals are very dry. You might need saline too if noses are sensitive.