Trying to figure out the new normal

I am sitting in my apartment typing on my iPad hanging on a music stand at eye level.

I moved over to the apartment yesterday afternoon... It took two carloads to get all my stuff over here. I was greeted by my neighbors with flowers and offers to help at any time.  In the evening I had dinner with my sister and Corvallis friends, Mimi, Lita, and Anita and Solon Stone… It was a lovely time.

Sunday I had a full day, spending the morning with Jon and the kids. Then in the afternoon it was wonderful to see my Altrusa friend, Karen French, who dropped by with mochas and took me for a wonderful long walk.Yesterday I had an appointment with the PA to check on my progress and get my stitches out. Both of my incisions are healing very well.  One of the things I need to work on is not looking down so much. (Do you realize how many things we do that require looking down?!) The PA said I could start walking short distances (0.1 mile). I think she was shocked when I told her I had already been walking 1+ miles twice a day without exhausting myself since I got home from the hospital. She would prefer that I did my walking on a treadmill, but I am hoping to find a walking partner here so that I can walk outside and go for longer distances on nice days.

I would love to have visitors. As most of you know, I am not great at being alone and most activities I like doing (reading, doing puzzles, knitting, etc) require looking down.

What a difference a day makes!

Just wanted everyone to know that I am back on feet again. The doctors made some minor adjustments in my medications. But we're pretty sure we have identified the cause of the nerve pain: vibrations from the walker on my arm and neck caused by the rough sidewalks. I took a long walk this morning (about a mile!) with Becca and Alex. I held onto Becca's arm and had no problem. And this afternoon I took another long walk with Jon

Now what I need is a clever designer and builder who can design a reading/computer lap table that will allow me to read and use my iPad without putting stress on my neck or bad arm.  Anyone want to take on the challenge?

Hope the sun keeps shining.  It really lifts the spirits!

You've got to expect a stumble or two along the way

Hi all,

I still have to pinch myself when I think about how well I am doing. As a result, I probably am doing too much and so today is a forced day of more rest and less activity due to much higher levels of pain. Time to begin watching all those movies in my queue on Netflix.

Yesterday, I had two long walks (about 1/2 hr each) and a visit with Dash, Lori, and Finley.  I found out that the rough sidewalks send vibrations up the walker and inti my bad arm which is very irritating to the nerves. So it looks like I will need to just walk around here holding on to someone's arm rather than using the walker.  I am interacting with the kids from a sofa or chair, but that still requires bending my head down which I am not supposed to do.

So by bedtime last night I was in a significant amount of pain and had a more restless night of sleep. Ice and a hydrocodone pill this morning helped some, but it's still a lot rougher than the past two days. So definitely a quiet movie day is in store..

Also, is anyone heading up to Portland in the next day or two? I need some things brought up from my house.

Thanks to all...keep sending those healing thoughts.

I'm home! (almost)...

Modeling the latest in stylish attire.....

I am home at Becca's for a few days. My discharge from the hospital was complicated by the hospital changing over to a new computer system over the weekend and a on-call Dr that had two hospitals to cover and an emergency surgery. She was supposed to show up at noon and didn't get to me until about 6:30 pm and seemed to be running on fumes. So I ended up coming home with only a partial list of medications that I was taking and no instructions for wound care. (Luckily we clarified all of that this morning by talking with the PA who helped with my surgery.)

A huge thank you to Catherine Mater who came for a short visit and ended up staying all day and bringing me home to Becca's house so my kids could cope with family and work issues which were complicated by the fact that no one expected me to come home before Monday or Tuesday.

I am sitting in the sunshine using a calligraphy desk that sits over my knees while I am sitting on the sofa. I will take a long nap this afternoon and hopefully get out for a walk around the block in the sunshine..

Thanks for all the healing energy you are sending my way. I think it makes a huge difference!

Molly

Some adjustments needed

So it was to be expected that Mom would likely have to come down slightly from her high of yesterday. And today was a day of adjustments:adjusting to new medications, new nurses, and new aches and pains. After having an unbelievably amazing nurse yesterday, we actually had to call in a supervisor and have a nurse changed today. In general this has been a rare issue at Providence and we appreciated the support we got from staff management. It sounds like they're going to be very articulate about who they assign to her for the remainder of the stay.

 She does continue to heal and make progress though. So all in all a good day.

What a difference a day makes!

Wow.

So we know that there will be lots of ups and downs along the way and a couple steps backward for large jumps forward and we don't want to jinx things -- but Mom's operative phrase for this afternoon has been "Pinch Me".

As in, "I can't believe things are going so well". In the last 24 hours she has:

• gotten a strategy that has her pain under control while dialing way back on the narcotics
• had a PT and OT session
• has gone for multiple walks around the floor
• has gotten rid of her catheter, has had a wonderful shower, gotten her hair washed, brushed her teeth and gotten to put pajama pants on (don't underestimate the power of those last four in feeling more human again)
• has found out that she doesn't need to wear her neck brace when she's in bed (allowing for more comfortable reclining and also for being able to see a tv/computer/ipad screen a little more
• has regained some of the strength in her left arm (the surgeon nicked/beat up on some of the major nerves to it, greatly weakening it and causing pain...hopefully only temporarily)
• has been able to start eating a little more than just liquids and so has gotten a little more strength/energy back
• has had a wonderful long nap thanks to the increased comfort of her bed now that she has her foam pad (thank you! thank you!)

It's kinda crazy. And I know there will be really rough days ahead, maybe even before she's discharged. But we'll take it for however long it lasts.

Sounds like at the moment, best guess is Monday for discharge...I think it mostly depends on a) when she regains all her swallowing ability and b) whether they want her to do a little more PT. Plus I think they just want a few more days to keep an eye on her and how the nerve pain and strength comes and goes.

Thanks all for all your good wishes and energy. Something's working, that's for sure.

b

you win some, you lose some...

So sadly, Mom doesn't look quite so cool, collected, and stylish wearing her version of this collar. Then again, this lady didn't just go through 7 hours of surgery hacking out bone and tissue and then putting in metal scaffolding in both front and back. So there. :-)

The good news is that Mom has moved from ICU to a regular room on the neurosurgery/orthopedic floor. She's sitting up for periods of time and doing a lot of maneuvering on her own and is eating soup/jello/pudding. So that's all good.

BUT....she's in great discomfort, not least because this brace won't let her get comfortable and presses against her sore neck and back whenever she tries to recline. And the beds here are significantly harder than the ICU beds (so thank you so much for all the offers to bring her foam pad up here. It's going to make a huge difference) She's also getting intermittent screaming nerve pain down her arm and having trouble swallowing due to a swelling in her throat.

Last night Jon and I had gone home after spending some time in the ICU getting mom settled. about an hour or so later we got a call from her nurse. She was having a bad reaction to the narcotics and was having bug hallucinations and an anxiety attack similar to when she was on IL-2. By the time I got back there they had gotten the medications figured out and she was back to her old analytic and logical self. I stuck around past midnight to keep an eye on her just to be sure.

We've been spending most of the afternoon thinking through strategies for pain management, for trying to position herself more comfortably, and for finding some way to keep occupied/distracted/entertained since she can't really hold anything/look up at screens, etc.

So continue to send your healing energy this way....I have a feeling tomorrow may be the worst and then things will start to get better. But meanwhile, Mom continues to amaze her doctors and nurses by her ability to spring back.

More tomorrow....