Ignore if squeamish...

Kirstin really wanted this photo of the staples to go online.  Some of you will appreciate it!

Home Base

A short note to all…

Thank you so incredibly much for your prayers, care, and well-wishes! It is so humbling to read notes (email, FB, blog comments) from all over the world, being reminded that we are not alone but have so many incredible people in our lives.  (So many friends and dear ones, but even folk we’ve never met!)

This note will be necessarily short (I’ll write in bits and pieces) but I did want to scribble a little.

Yesterday was the first I could read the screen with almost completely clear vision. Angles (esp b/c of glasses) still present a challenge, and limit how much I can do – but I can see it now, and type a bit.  (I can’t remember if Greg mentioned my flickering and blurry vision – for days anything I tried to focus on flickered like an old tv screen, albeit less rapidly each day. CT scans came back clear so doctors were sure it wasn’t anything lasting. It was quite delightful the first time I could finally focus on a face though: I made the young x-ray guy zoom in, and then asked if I could look at his colleague’s face too.  J )

It is so very good to be home; such a gift to be able to see and smell the greenness of outdoors; to be with ‘creature comforts’ (including the creatures…2 cats slept on/against me all the first night, and Vigo-the-dog as close as he could get beside me whilst still on the floor [virtually under my pillow] – I felt well-loved!) The first 36-48 hours were pretty tough though…were we to replay, Greg & I are agreed that I should have really spent one more night/day in the hospital. The doctors were keen to see me off & home, but the nurses were way more reticent, not convinced my pain-levels were consistently low enough yet. But a grace of physical pain is that one can’t remember it: one can remember that one was indeed in a lot of pain, but not exactly how it felt. So, those initial hours are done, and the pain’s much more manageable now (and nausea from pain completely gone).  Still a full morphine dose, and still far from pain-free, but each day is a wee bit better…and physical strength is multiplying each day too. Yesterday I made it out to the pond (barefoot of course: hurrah!!), had a wee sit, and made it back again (ab. 5 min each way?). Today I made it out to survey the marvellous work Ben (with Denver) has accomplished in the veg patch, on to the pond, and then in again: whooped, but happy! Petit à petit à petit. Every day brings a wee bit more independence (it was wonderful having my lovely husband feed me…but awfully nice to be able to do so myself again!). I still sleep lots & lots & lots…

The challenge ahead of course will be deciding what I should do as opposed to what I can do. As my reputation precedes me on this one, feel free to up the prayers!  J We are accumulating dates on things like staple-removal etc.  Various medical people phone us every day to check in on various things. A few friends have asked about physio: I’m not allowed to do any until the collar is off – about 2 months from now. At this point my focus is to be minimal neck movement and maximum scar healing (for both sites, but esp neck). I’ll do my best! The weirdest thing is still the fact that my skull is about 80% numb to feeling…even though it gets itchy, I can’t feel a thing when I touch it (esp weird for – still delicate – hair brushing)…it’s kinda like it’s made of metal. Every once in a while a new area decides to begin ‘coming back to life,’ which usually incurs another reach for the meds. The rest of my body is a little happier to move and flex each day. Of course at the mo’ the RA is creeping back in too (until I can restart at least the anti-inflammatorys), so I’m happy to have my walker and an amazing loan of hot wax hand-soaker!

All in all, I’m incredibly blessed & gift-laden: thank you.

Home, James, and don't spare the horses

We're at home again.  All good, and more details soon.

Progress towards "dehospitalization"

Hi everyone, Kara here (Greg's sister)

I know you are all praying for Kirstin & Greg and love to hear how things are going.

Kirstin is making progress everyday.  Step by step, she is being "dehospitalized".  Today, the needle stents were removed; and medication is mostly in pill form now.  The wound dressing on the back of her neck was removed.  The nurses have left it off, to allow it to breath and they said that the wound is looking very good.

These signs of healing are all cause for a big "WOOHOO!!!"  Yeah!

Managing the pain is still an issue, and she still feels nauseous at times. She requires some assistance to make the trek across the room to the facilities.

However, overall - seems to be growing in strength and energy.  Each day brings improvements.

She has been able to have a few visitors, who have brought lovely wildflowers/garden flowers, a Secret Garden painting, Linlathen event poster, and a beautiful hand-beaded picture from Greg's Mum.

There is talk underfoot about a decision being made tomorrow about what the next step is.

Physio and occupational therapy will be doing an assessment during the day.  A decision will be made between either Kirstin going to the General Hospital for some days of further care and rehab - or going home.

Being at the General means a longer drive for Greg, but may keep Kirstin away from trying to do "too much" at home.   Especially with the Linlathen conference coming up in 2 weeks time!   Of course, there is 'nothing' like the comfort of being at home.

Each day the picture changes and improvements are made.  More will be known as each day comes.

(and one note from Greg: the night nurse Larry says he's never seen a hip graft site heal so quickly!)

No more tubes

Kirstin had a reasonable day yesterday with one move to the chair accomplished.  Time is the great healer - and amazing that it can be so quick.  Her tubes were all removed over the course of the morning and she has made it through the day mostly on pills - just one or two booster shots for breakthrough pain.  The wound on the hip from the graft is healing pretty well, and she hasn't felt it at all (which is great - apparently most people experience the graft site as the same pain as a broken hip).

She managed to walk a few metres down the hallway as well, and is trying to be more active.

Her visitors today included two other nurses from the ward that heard she was from Beckwith - and so they came to chat about our neighbours and the local gossip.

The night shift has just started and the new nurse is thinking that she might be released tomorrow, as long as the pain is completely controlled by pills and general mobility is adequate.  

First full day of recovery marked by nothing particularly dramatic.  Best sleep for Kirstin in months due to the quantity of morphine and a handy catheter (if you ever get a choice, the Kendal Precision 400 is to be recommended...)

Pain control has been difficult to manage, and although the hospital has a dedicated 'pain team', one of them turned up in the afternoon but the lidocaine didn't start flowing till this evening.  Quite a bit of nausea as well, but we have been remembering my grandfather's advice that one should consume strawberry jam when nauseous - it tastes the same coming up as going down.

We saw the physio for the first time today, who got Kirstin onto her feet and over to a chair.  It didn't work out great, and so we'll try again tomorrow.  We petitioned to keep the catheter for another night so are hoping for a second night without movement and hopefully some recuperative rest.

Kirstin isn't up for visitors at the moment, but once we get a feel for the length of time she will be here then we will try to come up with a plan.

Thanks for all the warm messages - I've been reading them to Kirstin and she smiles a lot.  Our _amazing_ seventh line neighbours made a photo poster (see below) that I've stuck to the ceiling of the room (fortunately avoided anyone from health & safety monitoring my technique).  When Kirstin came back from the x-rays this morning she laughed to see it!

All good

Kirstin's now in the recovery room waking up - we'll be allowed in in about 30 minutes.  Dr A just came out to see me and reports that all went smoothly.  Only had to fuse C1 and C2 (if the bone quality had been poor, he might have had to fuse the occiput/skull as well which would have resulted in much more motion restriction afterwards).  They took the bone graft from the iliac crest and did the rod&pin method along with a little fence wire...

Depending on pain level, he expects she will be able to leave by the weekend!

Oh, and I didn't want to share this earlier - but as Bruce and I were leaving the hospital this morning, we saw the surgeon coming in.  He was carrying 'Guide to Operating Techniques' under his arm.  I said hello and made fun of him.  Not sure if he was really doing some last minute reading or what!

3h in

We arrived at 6h00 this morning, did some final checks, then Kirstin was whisked away by a porter about 7h30.  Op was scheduled to start at 8h30 or so.  Expected to wrap up around 2pm, give or take.  No updates yet (this is not a made-for-TV medical program...).  Bruce and I went for brunch and a few errands, back in the hospital now.  More anon.

8:30 a.m.

An early start tomorrow: we need to be at the hospital by 6a.m.
But it'll be nice to have the surgery so soon (first of the day, we think).
(The 5 hr "pre-op" session last Monday means there shan't be much more to do tomorrow other than get settled.)
Kirstin's big brother came up today, to hang out with Greg tomorrow, which is great. Greg's bad cold has been, aside from the usual annoyance, a bit concerning: if Kirstin got sick the surgery would have to be post-poned again -- but despite Greg's on-going sniffles, she feels absolutely fine. (Even had her brother & Greg's sister weeding in the veg patch with her for a wee bit today.) The animals -- of house & barn -- will be in Margie's capable hands. Either Greg or his sister Kara will update the blog post-surgery.
Many thanks to all for your care, prayer, and love,
G&K

Less than a Week...

Kirstin’s update

June 2^nd, 2016

Hello everyone,

I am sitting here with Kirstin and am going to write another update on her behalf.

Kirstin’s surgery is on Wednesday, June 8^th  at the Ottawa Civic . They won’t know the time until the day before, but the surgery itself will likely be about 6 hours long. She’s been off anti-inflammatories for about a week now, which is pretty painful, and means that she can’t do much, especially with her hands. Greg usually has to help her get dressed in the mornings -- like back in the early days of RA diagnosis. Morphine amounts increase daily.

It was a big gift/relief that last Friday the doctors gave her a steroid shot in her knee because it was so swollen (and incredibly painful). She’d gotten to the point that she mostly couldn’t walk except with a walker, and she’s now much more independent again. Hopefully that will last beyond the surgery.  For a few days, over the weekend, she had a little ‘overflow’ relief in her hands as well, which meant that she could delight in watering & a wee bit of weeding in the garden on Sat morning, be the first to discover that two hens had hatched out their eggs (current chick count is 18!), and even play a little Rook at the beginning of the week with the Dycks (flashback to high-school summers!).

Although she has some neck pain, the major issue these days is the arthritis pain, which is what she now primarily takes the morphine for. Doctors are in discussion as to how soon after the surgery she can start taking her arthritis medication again.  (2 weeks? 2 months? Different doctors think different things, but the arthritis has advanced so much that changes are even visible now – arthritic nodules, etc -- and we’re hoping that the rheumatologist [the 2 weeks person] will win this battle.)

A handful of local teens have been helping out in the garden and around the house: making her lunch, bringing her lattés, distracting her with Eng Lit tutorial needs – all of which keeps her happy. At the same time, she and Greg currently have very heavy hearts for dear friends (former roommates of not only Kirstin, but also Bruce & Amy), whose young daughter has just died after a long battle with leukemia. It is at times like this that physical distances between dear friends and family is hardest.

Today I’ve helped clean & sort her room to get it more ready for return from surgery, which should be about a week afterwards (it’s apparently hard to predict exactly how long she’ll be in).  My daughters will trim her hair and manicure & pamper her in other ways on the wkd to prep for the hospital stay. They won’t know until after surgery what the visiting restrictions will be like, or how soon they can start. Once Kirstin’s out, her mom is going to come up to help out for a little bit.   Kirstin will remain mostly ‘hidden’ during the Linlathen conference, but will fully benefit from the presence of dear friend and former hospital chaplain, Revd Julie Khovacs, during that time (Julie put in her hours helping tend Kirstin way back in Scotland-days, when she was fully wheel-chair-bound). We still have our eyes set on Kirstin’s Cambridge lecture in late-July as a ‘recovery-goal,’ though much has to transpire between now and then.

Valerie Michaelson.