Wednesday, November 27, 2013

Sophie this morning with flowers

Her friends sent flowers. She looks really good for having had surgery
less than a week ago.

First day home.

It was a rough transition yesterday from hospital to home. Getting in
and out of the car was brutal (we took my Mom's Dodge crossover car,
since it has a 3rd row--seat pretty high and I didn't bring a stool to
help her get in). I brought a twin sized foam mattress pad and folded
it lengthwise to put under her in the car. At least that worked. But
getting in and out hurt her horribly. We were supposed to stop 3 times
and let her walk. We stopped once because the wind was cold and
strong. Once was too much. It hurt her worse than if she'd just sat
for 3 hours and got out at home, even if that would have made her
extra stiff.

Finding the right place to sit when we got home was impossible. She
has to be straight up and down or lying flat or on her side. We tried
sitting and lying on the couch--firm cushions on bottom but soft back,
and even with pillow behind her it didn't work. I didn't think of
using our rocking chair until this morning.

Her bed is fine and even though it's high off the floor (step stool I
have is too high), she figured out how to scoot without hurting too
much. She slept all night -- lots of pain Meds still.

She's been on and is still on sennakot S and miralax. Still
waiting..... I know it's something to be careful of. We may have to
use a suppository soon.

We borrowed a bed side toilet from my grandma. Also a very smart thing.

This morning I figured out how to use our rocking chair, by wrapping a
section of the foam mattress pad around the back cushion. It's the
correct up-right angle and has arms. And put it in front of our side
table by the couch, which keeps the chair from moving. She can get up
and down by herself.

She can lie in our bed and watch tv. She can't lie on the couch yet.
Still too sore and muscles dodgy to adjust on it easily.

Reading is hard because of the pain Meds making her eyes not focus
well so no reading yet. She's already bored and it's only day 1 at
home. But it's only day 1. She'll keep healing and be able to do more

Luke went to school today. So it's just been Sophie and me. We've done
ok today.

I'm tired and haven't even taken a shower. Very fried and feeling the
stress let down, semi-depressed. Worried how things will work when I
start the new job Dec 9. Praying she's mostly ok by then.

Friend is bringing dinner tonight and another friend bringing dinner
tomorrow. Our friends set up a meal train and are bringing dinner
every other day for 2 weeks. My mom went grocery shopping for us last

That's about all I can write for now. Happy thanksgiving!

Tuesday, November 26, 2013

St Louis Tuesday

We're going home this afternoon! She still needs a sponge bath and
hair washed and a few other things, so a few more hours.

She's doing amazingly well. The pain doc said she's the best patient
she's seen in a long time, as far as how quickly she's recovered and
her general attitude.

Busy so have to go. But great news today.

Monday, November 25, 2013

St Louis Monday

Progress already today. 

Sophie sat up again and stood for the first time for the surgeon at 6 am. She later sat in a chair for 30 min. 

She walked with her PT's help to and from her door. 

She ate French toast for breakfast, her first food since last Wednesday. 

Her drains are out (she had 3 to drain away excess blood), catheter is out, dressings removed, no more IV bags--she's now completely unattached to anything.  

It is still very painful to move. The pain team has been tweaking her Meds and they have a schedule that will hopefully manage it well enough (can't take all the pain away). 

She has a lot of work ahead of her but she's doing amazingly well. Ever the trooper. 

Doubt that we leave tomorrow. My guess is Wednesday at the earliest. Depends on her ability to walk on her own and her bowel movements. 

I slept at the House last night. Rough evening with my mom. Her behaviors are frequently examples of those I hate in myself, and having her here is a learning experience for me on how not to behave. 

She chose to stay at the House with Luke this morning, which was a great idea because we needed a break from each other (although she would never admit she needs a break from anything, or needs anything at all--one of the things that I'm tired of, her martyr attitude). They are riding the shuttle to hospital late this afternoon. 

Sophie will be standing and walking today. Lots of work and it will probably be a tough day. 

Sunday, November 24, 2013

St Louis Sunday

Still in ICU but expect to move this afternoon. All her numbers look
good. She sat up this morning with help from PT and nurse. It was very
painful but she did great. We're waiting for orders so she can start
clear liquids. She's only had ice chips and water and is asking for
food, which is a good sign but has to go slow.

I was the only one in the room when she sat up. I was stoic and
contained, because she doesn't need me freaking out, but after she
fell asleep I had a little breakdown. There's a reason I don't cry
when the crisis is happening. When I start it's hard to stop.

BIL got in last night at 1:30 am. Good he's here. She's been awake
talking with us for the last hour+. She's off the dilaudid (which was
the pain med in her button) and has a 12 hour pain pill and a 3 hour
pain pill, as well as a muscle relaxer. I think the change in Meds is
helping her stay awake.

Here's a pic. She looks so good! It's a relief to see her like this.

Saturday, November 23, 2013

St Louis Saturday

Everything's still ok. Her blood pressure dropped last night. They
gave her Meds to bring it up. Weaning her off them now. When her
pressure is stable the PT will have her stand up. We can't move out of
ICU until pressure is stable. They said BP dropping is normal for her
type of surgery.

We do get to be with her all the time, ever since she was in recovery
after surgery. Even Luke can see her in ICU. She has her own ICU room
which is awesome.

Mark stayed in ICU last night. He did sleep some. He'll nap today.
Mom, Luke, and I went back to the House and we were all in bed before
9:30. I took a Xanax and slept until 7 am. Feeling good.

My brother in law is flying in tonight from Colorado to visit. It's a
surprise but welcome. He's good with Luke. It will be good for
Mark--they are very close. Jeff and Mark and Luke will stay at the
House tonight, and mom and I will sleep at the hospital. We plan to
trade off every night.

I know it's going to be rough when they start moving her. So some
difficult times ahead. I'll update as often as I can.

Friday, November 22, 2013

St. Louis Friday

Surgery started at 9 am. We got to the hospital at 5:45. It feels like
1 pm already. Loooong day ahead of us.

Sophie hasn't eaten since Wednesday night. She was ok yesterday until
the late afternoon when her energy crashed and the dressing on the
picc line started itching and burning (sensitive skin--prob just
adhesive irritating it, wasn't blistering or anything). I gave her
Benadryl and Tylenol, she slept a few hours, woke up for a couple
hours and watched tv, then went back to sleep around 9. She slept all
night till 5 am. We kept her well hydrated yesterday. So it went
pretty well, considering.

The place we're staying is called Haven House. I think it's an old
nursing home that's been converted to a hotel-like place for families
of hospital patients. The rooms are huge with private baths. They
serve breakfast and dinner, there are several family rooms with couch
and a tv, a gymnasium. Each wing has its own washer/dryer, full
kitchen, and family room. It's clean and homey.

Our pastor drove over this morning. He left at 3 am and was here to
see Sophie at 6:30 am. Totally unexpected and a huge blessing to us

We have a private waiting room on the surgery floor. The hospital
really does a great job taking care of families and siblings. My mom
and I took Luke to the play room on the lower level. We could even
leave him here, like a day care, if we needed to. He's paying the Wii
right now.

There's a Ronald McDonald family room at the hospital where you can
shower, wash clothes, has snacks and drinks for no charge. Each
patient floor has all that too, but this is smaller and a little
nicer. The lady there said their showers have hotter water than the
hospital's showers. :)

Sophie will be in surgery until 2 or 3 pm. Then the ICU all night,
then moved to the floor on Saturday. She'll have drains in her back
and a bladder catheter until Monday. The surgeon's nurse said she'll
probably go home Tuesday.

So that's everything so far. I'll post more when I can. Thank you for
all the prayers.

Thursday, November 21, 2013

St Louis Thursday

We just arrived. Sophie's getting the picc line put in now. She is
such a champ. She watched when they put the IV in (IV delivers a
relaxation med while the doc puts in the central line).

So far so good.

Wednesday, November 20, 2013

Family pic for Christmas card (155.0)

Here are this year's pictures for our Christmas cards, which are already printed. I have address labels ready, and while Sophie is home recovering I'll be stuffing, licking, labeling, stamping and have them ready to mail 12/2. Yay me for being ahead of the game!

The card is one of the long photo cards, and here's the 2nd pic:

I didn't add these, but here are the kids individual pics:

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!

Monday, November 04, 2013

I got the job (154.2)

They called me late Friday afternoon. I accepted this afternoon. It's been bittersweet, and it wasn't until we talked with the owner of our office that I knew for sure I was taking it, because we know that I'll still be able to support Mark (paperwork) in my off hours (yes, a lot of work for me, but it will be worth it and frankly is our only option at this point).

My start date is Dec. 9. They were willing to wait for me until after Sophie's surgery.

I'm swamped at work and don't have time for more details. I'll post more soon.