Sylvia's Journal

Friday, August 17, 2007

Axel came home today – Jim and I busted him out of the joint today at about 1:45, hit the coffee shop for a jolt of caffeine and then took a lovely lazy drive on 127 back to Manchester. He had a misty moment with his old friend the ocean, commented on how much he was noticing, how different everything looked. Upon arrival in Manchester, we ‘spun the beach’ per Axel’s request then hurried home. It was a fancy return, Ted laid out the red carpet at the end of the ramp (a lovely red towel) and Sylvia wheeled herself out the front door. It happened rather quickly, in fact. Axel mentioned to Ted and the gang ‘I never thought I’d be so happy to see you all that I’d cry!’ He and his lovely wifey were in each other’s arms in a matter of seconds. There were tears of joy and sweet nothings I’m sure, but I was running inside to get the camera so I could document it for you all – and I missed it. (You can see some of the shots I did get – I’ll put em up on flickr later). We walked around the house, guiding him through the new layout. He seems to be sure that he’s rid of much of his ‘clutter problem,’ and commented that he liked the lack of ‘stuff’ in the hallways…we’ll see how long this lasts.

We had some visitors – Gary Gilbert and his friend Lars (wohoo for the Swedes) came over to figure out what house painting projects dad had been working on, and it seems they are gonna help finish some of them. Kurt Melden came over with some tart apples from his apple trees and promised the folks a ride in his golf cart type mini car thing? He’s going to give em a ride up around Smith’s Point tomorrow – that should be an adventure. Nancy Coffey came over with a spinach quiche for lunch tomorrow and some homemade bread. All delicious. We had a walk in the garden, picked some tomatoes, some carrots, and (most exciting) unearthed some fresh potatoes – the first harvest!

The day went by rather quickly – my father was up most of the day (and stayed up until about 11:30 with Tessa and I watching a movie), had a nap before dinner and many glasses of ginger ale. Sylvia had a bit of a rough day, as she did yesterday, due to what she thinks (and what seems to be) withdrawal from the pain meds she was on. She had a real tough time yesterday, finding much of her pain unmasked. Aches and pains and general discomfort – hot and cold sweats…I think tomorrow should be much better. She now has some Tylenol with Codeine to help her through really tough times, but she is trying to steer clear of any narcotics from now on. She awoke when we brought dad to bed at 11:30, and it seems like the presence of her hubby will definitely alleviate some of the pain. This is way too much detail, but this is the level I seem to be operating at right now, so I apologize. Suffice to say, I suppose, that the homecoming was a success. We had a delicious first post crash meal as a family unit of hamburgers and french fries and mozzarella/basil/tomato salad (Jim is a fantastic cook)– most of the ingredients came straight from the garden! Axel did a lot of walking, didn’t seem to have any problem getting up the stairs – slept in his own bed, with his own wife, and his own blankets…Sylvia curled up next to him and is anxious to get the hospital smell off him. Tomorrow we experiment with giving Axel a shower, learning about exercises he has to do from the visiting nurses, and getting used to having two lovely, charming patients in the house. I think Chris Kessler comes tomorrow (or Saturday) to stay for the weekend, and then Monday I am off to Dallas for a week of work…I think most of the coverage for that week has been sorted out, but it’s always worth cheking in. Tessa’s email is tessamagnuson@gmail.com if you would like to check in (and check the calendar).

That’s it for me now – tomorrow I am sure I can write something a bit more insightful, but tonight I’m exhausted, and am going to fall asleep happy, grateful, and full of love and admiration for my parents, my sister, Jim, Steve and everyone else who has done so much and been so strong . It is such a pleasure to have our resident pirate back – there’s nothing better than reuniting a pirate with his wench. Pictures to follow.

Sita

Save the date: Sunday, August 26th @ noon. Fatu had the idea of having a big party/fundraiser at the house. Something like $10 (?whatever you can give…a quarter pays for parking, after all) gets you an afternoon of music, tons of delicious food (African, BBQ, etc) and a bonfire (plus, of course, delightful company). Axel should be home on the 16th – so this gives him a week to get used to being back on the homestead. I think by then the two of them should be able to last through the day, and will enjoy seeing as many of you as possible. They’ll also be close to their beds, so they can retreat if necessary.
So – speaking of music and parties – if anyone knows of any bands that might be fun (who are willing to donate their time) please let me know. I will try to arrange for my musical compatriots to come and play, but I think we could have lots of people play. My father mentioned Lark’s band – send ideas my way (I’ll act as entertainment coordinator).
I realize this is going to take place on a Sunday, but this is the only day that works – I arrive home on Saturday night (midnight) from Dallas, and Tessa leaves for Canada on the 31st – hopefully there is enough time for people to make it happen.
This makes me think, too, that it might be a good idea for people to email me/tessa and let us know if they are going to come. This way Fatu won’t make food enough for 10,000 when only 10 people are going to come.
Also – if anyone wants to – you are welcome to stay and camp out at the house (assuming good weather)…I think we have some late night bonfire/guitar playing around the fire planned…(we also have 2 bedrooms available for guests – one with a full futon and the other with a single bed).

I am currently setting up a group calendar – and it would be very helpful if anyone interested in helping out with visits/etc would post their email as a comment in the guestbook. this way Tessa and I (and whoever we enlist to help us entering emails into this calendar thing) can easily look here and copy/paste into the invite list for the calendar. If you feel uncomfortable posting your email here, you can email me (and copy tessa) with the subject heading ‘Calendar Email.’ We have already begun to populate this with appointments/scheduled visits/my work schedule etc. I think this will be a very helpful tool for everyone – and once we get folks in the system we will post a link to the site from the links section here.
sita@klompje.com
tessamagnuson@gmail.com

It’s hot here today, the kind of hot that makes waking up difficult, and chores even more difficult – luckily we had some visitors today who brought some good company and a new batch of delicious cold gazpacho! Sylvia was carted off for another visit with her hubby and Tess and Steve took a much needed break during the day to take care of a million personal things – and to try and sort out a way for Steve to get back up to Ontario (if anyone knows anyone who is headed north, let us know. We’re looking for ride shares or cheap bus/plane tickets). I have been busy updating the nurses station (will take a picture of this very helpful improvement to the house and post it on my Flickr site later), and I am pleased to announce that we are slowly checking things off the list (although as soon as a space is made on the whiteboard, another thing takes it’s place!). So, as Joe mentioned, we are trying to organize ourselves so that in the coming weeks and months it will be easier for folks who want to help to know what needs to be done. We have divided the work into groupings as follows:
1. Housekeeping: This covers the daily/weekly chore list of things to do around the home including, but not limited to things like laundry, dishes, trash, vacuuming, general clutter management, meal preparation, grocery shopping, fish and animal care, and most importantly yard maintainence (this may be where some help would be appreciated). Ted has done an amazing job watering the flowers and garden everyday, but there is still a lot of stuff that might be good for people to sign up for. Here is the list:
Weeding/flower maintainence (deadheading, etc)
Lawnmowing (this needs to be done once a week – let’s say every Thursday, since Steve just did it yesterday)
Lawn watering (with the sprinkler that seems to have vanished – this obviously requires not much work after all the sprinklers are in place – but currently we have none). If anyone has extra sprinklers that we could borrow that would be amazing – and if anyone has passion around setting this up/helping us find some sprinklers, we can make a chart here at the house that has info about when they need to be turned on, so anyone who is visiting can just turn the hose on, then turn it off. Simple. I think my father said (since the grass is rapidly dying) that once a day for 20 minutes should do it for now.
Then, coming in October we will need to start thinking about winterizing the property, which is going to be a lot of work – but we can deal with that later.
Another thing that we will need to start thinking about sooner than later is getting the house ready for another patient – which will require some more furniture moving/organization including bringing down the other twin bed from upstairs, or taking Diane up on her offer of the extra queen bed that she and her husband have. Either way, there will need to be some more clutter removal and heavy lifting (maybe taking some of you up on your storage offers) that will need to happen soon (in the next 2 weeks it looks like).

2. Patient Advocacy: This includes things like:
Precription filling/picking up
Appointment making/rides to appointments
Calls to MSH HR and BCBSMA to figure out when paid benefits from their health insurance starts to stop (VNA), and possibly what other types of services are included in their coverage (accupuncture/alternative healing/massage therapy etc ???)
Nutrition – we need to begin to think about what the best type of food is during the recovery time – my guess is that they are going to need to eat certain types of food more than others so that tey are getting the right nutrients/vitamins in their systems (especially since they are not moving around much). I think we’d rather have them eating spinach, for example, instead of taking vitamins/pills for Iron defficiency (I don’t know a thing about this stuff).
Occupational Therapy/Physical Therapy (knowledge of what the people who come here to do with them do, and what we can do to keep Axel and Sylvia working towards goals set by the O/T and P/T folks when they are not here)
Therapy – this comes in the guise of ‘professional’ therapy with Paul, but also includes therapy with friends. There is going to be a real need to talk through a lot of what has happened, and Paul has already been a great asset, but talking to friends is very important too. When they are ready, a nice quiet afternoon sitting by the ocean and listening might be a nice gift that any of you can offer.
Other advice (medical, emotional, etc) Some of you have already offered this, and we may take you up on this soon. Joe, for instance, has a lot of experience to share in going through crisis – and in fact this helpful list was brought to life with his help). This is a bit of a vague area, but as we all know, knowledge sharing is good. I’ll leave it at that for now.
In the interest of not making this a 90 page entry, I’ll move on to category 3.
3. Counseling/Coaching This has already been addressed a bit, but the whole moving forward piece is going to be quite important. We have included Career Counseling and Transition Managemet in this category. How do we move forward, what affect will all this have on our careers/schooling. What pieces of our lives do we pick up and resume and what parts of our lives need adjusting. This event has been and will continue to be a life changing event, so how do we deal with this/what are the implications of all this? I think this will get tied into the Therapy piece, but this may also be another set of conversations that needs to happen at some point. I know that my mother has been already a bit overwhelmed by people asking her when she is going to come to work, and if she can do this project and that – and it’s just too early. This recovery is going to take a long time, and any rushing forward to get into the old swing of things just isn’t a good idea right now.
4. Caregiver Support This is a category that many of you have already helped out in, which includes:
Respite for Tessa, Steve, Sita, Jim and anyone else who comes to stay to look after Axel and Sylvia and take care of the house. We all need a break sometimes, and if people want to come and spend the night sometime, or take over for the day, or drive mum/dad to appointment – that would be great. Just call and let us know when you want to come (or we will post dates that need to be filled – which I will begin doing after I post this long novel of an entry). This also includes Filling in for me when I’m off working. I currently have some work coming up in Dallas and will be gone from the eve of August 20 (Monday I think) until midnight on August 25 (Saturday?). Tessa and Steve will still be here, and Jim will be here (but probably working during the day – we still have to sort out where (some of you should expect a phone call next week)) – but we will probably need some extra help that week. Please let us know when/if you are available to come for the day/night. I also have accepted some work in Shanghai for September. As many of you know, Tessa and Steve will be gone as of August 31st. She has to start school again in London, Ontario shortly thereafter. So, I will in general be needing a lot more help after that, but I will be gone for about a week (the week of the 17th I think? The dates aren’t nailed down quite yet) in September and will need someone/various folks to take turns spending the night/day. It is very possible that my mother’s sister from Holland may be coming to visit suring this time, but nothing is ironed out yet.
Moving on…

5.) Finances We have already had a lot of help from Andrew & Katie Blair in setting up an account @ Manchester Savings Bank where people can donate money if they feel like it. Please understand that this is in no way being asked of you, but Andrew made a point that, for some people, this may be something they want to do. This has already been a big help, but I’m not sure how many people are aware of this, etc – so some communication about this might be nice. (Note – my parents are very open with their finances and are willing to talk about this, so don’t feel that you need to beat around the bush if you want to talk about finances with them – although I think at this point my father isn’t quite ready/doesn’t need to start thinking about this aspect yet). The main thing in this category is that we need to seek the advice of an accountant. (I have yet to get in touch with the one my family uses – this is on the to do list).
Better systems of bill paying – managing account balances, dealing with receipts etc…this is really a management job…
Fundraising (Joe’s logo idea comes into play here…) The account at Cape Ann Savings is really wonderful, but we thought there might be some more (fun) ways to get some cash flow into the house – like a nice dinner outside here at the house, or a raffle for a weekend/week (at a later date) staying here in the house and kayaking/enjoying the beach with homemade meals (kind of like a B&B idea)…haven’t really thought this one through, but there might be something fun that we can do, that everyone in this community can take part in if they want. These are ramblings at this point, and my fingers are tiring…
6. FUN! What you’ve all been waiting for…
we will need some monotony breaking!
This includes:
Movies
Game night
Spa/Massage treatment at home
etc…I’m sure you can think of more…

So – there is is. This is the result of some early brainstorming with Joe. Obviously, a lot of this is stuff Tess and Steve and Jim and I will take care of – there is no expectation that anyone is going to come and empty the commode every morning, or to pay our bills for us, but I wanted to share this list with all of you so you understand what’s going on here – in the interest of keeping this whole recovery process transparent – and because I am sure there is stuff on the list that I assume we have to do ourselves that someone may say ‘hey, I can do that!’ and then take a big load off our shoulders. One thing that is currently on the ‘Top of Mind’ board at the nursing station is to create a comprehensive list of names/numbers of people who are available to come stay for the day/night/bring food, etc. We are going to make a book that we can leave on the table, so it is easy to sort through and call people. It would be nice to have some sense as well what the best day to call would be (things like ‘sunday’s no good, Wednesday is best for me…etc’).
Ummm. I’m sick of writing – this was enough for today. I will make Tessa write an update about the folks and how they are doing. Check out the flickr site for some more folks – Annie is going to send me a nice photo of mum & dad at Shaugnessey today, and you should really check out the pirate photos from yesterday if you haven’t already. Tessa and I got him some props at the Pirate Museum in Salem.
Love,
Sita

sita@klompje.com
tessamagnuson@gmail.com

I’m much too exhausted to write much today about our fantastic trip to Worcester, but I did post some really lovely photos of my mum’s blistered and yellow foot which saw the light of day (flourescent lighting counts I think) for the first time in two weeks today. She got a real cast put on by a nice guy from Ghana. We decided to go with the blue cast, although I was really hoping she’d pick the american flag/camo cast – i thought it would be appropriate for the paintball outing i have scheduled for next week.
I learned some things today which I will share with you all. 1a). Don’t ever drive a car anywhere near the pike/128/boston/north shore/290 etc… between the hours of 7am and 6pm. It’s just awful. 1b). Especially not on 3 hours of sleep. 2a). Coffee and Oatmeal are good for constipation. 2b). Coffee can protect you from skin cancer (and will make trolls dance out of your faucets? come on…). 3) Hospital turkey is not good. 4). Wouburn is a pain and the drivers there are awful.
Anyway – go check out mum’s lovely foot on my flickr site(don’t look while you’re eating dinner).
later, friends!
s.

A quick update on the latest events. Axel has arrived in Salem. Joe was with him. He was eating real food (tuna fish sandwich) and in great spirits. The place is nice, airy, lots of windows, trees. He is sharing a room with others. I can’t wait to see him. Tessa will bring him his own cellphone (978-902-0824). I have no other number yet. I will post the address shortly. In the meantime check the website of Shaughnessy Kaplan Rehabilitation Hospital for directions and info about visiting hours. We expect him to be there for a couple of weeks.

And keep those prayers, Reiki, vibes and other good vibrations coming, we are sucking them up (and it shows!)

Thanks Jeanie for the most amazing collection of brownies that aren’t brown; Carol, Ken and friends for ‘sitting’ me and bringing another extraordinary lunch, and their daughter Jenny for Zoology. Thanks Catherine for the fastest response to my request for zoethout thee, and thanks for all your entries in this guest book. They cheer us all up.

If anyone is available to visit Axel in the hospital tomorrow please do – Tessa and I are going to be in Manchester taking care of a million things that need to get done (for ourselves and our parents) and he’s very excited to see some other familiar faces. Andrew is planning on being there at around 11, and Woody will show up sometime after lunch , then Carol Williams will be there after work until she gets kicked out, but if you’re available, and willing, and have some amusing radio or audiobook to while away time during the drive, do stop by and see him. He knows his daughters won’t be there, and is really excited to have visitors. He may be tired, he may sleep while you are there, but having someone by his side through waking and sleeping hours is very important. There is also the added bonus of the smoothies – Tessa is leaving her ‘snack cart’ there so if you feel adventurous and/or don’t want to see Axel ingest the toe paste that is the hospital food, you can make him (and yourself) a smoothie! Send me an email if you have any questions –
sita@klompje.com
s.

Today was a really hard day – Axel’s surgery was postponed because he woke very confused, more so than usual.Tess was there with him in the morning, expecting to see him off to surgery, but he had had a fitful night, ripped his splint and bandages off – he was very upset, and yelling – so today he was groggy, and mumbling a lot and confusing his dreams for reality (some say this may be from morphine but he hasn’t been on morphine for some time now). Tessa called me at home, very upset, so I raced to Worcester (with Anne staying home with Sylvia). When I got there, Axel was restlessly sleeping, sleeptalking, fidgeting – it was unusual behavior for the middle of the day. His nurse was soulless and had no bedside manner to speak of with a nervous twitch that was rather unsettling. He manhandled dad’s arm when trying (unsuccessfully) to put it back on and didn’t respond when dad introduced himself. We don’t like him and made sure that he won’t come back to Dad’s watch.

So this weird behavior lasted for a while, but toward evening – about 4ish – he began to become lucid again. He had a catscan and from that point on was pretty much with it. He will most likely have another MRI tonight – as ordered by the neurological team that came in and evaluated him. They performed a bunch of tests with tuning forks and flashlights and rubber hammers and math questions. They determined a few things. 1) he is having a really hard time with concentration. 2) the (small) part of his skull that he fractured is very near his right ear mechanisms – so this is why he is having trouble hearing out of this ear, and why there has been occasional bleeding from this ear. 3) he is seeing double, with the image on the right appearing a bit higher than the one on the left – when they did the flashlight test the right eye was not in sync with the left – it was staggering a bit behind . This is one of the pieces of information that they have that can’t be explained by the injuries they know about – which is why they called for more scans.

To deal with this for now, they gave him an eye patch, so he looks like a pirate. We had him practicing his pirate speak after his dinner smoothie (mango/orange/apple/pear). He got a cold washcloth for his head around the same time as the patch – so it was pretty piratey in the room, I have to say. When the orthopedic surgeon came in to check in on him, and left without commenting on his pirate look, dad said ‘I can’t believe he didn’t comment on my pirate outfit!’ I must say, I can’t believe it either. This is the doctor, by the way, who also told us that the initial cat scan of his head (the one from today) didn’t show any huge glaringly obvious things wrong – which is a good thing. the bleeding hasn’t gotten any worse. They have to do an MRI to see better, I guess.

Tonight they had a really great ‘babysitter’ as she called herself – someone who looks after him/just sits there with him to make sure he doesn’t try to rip his splint off again. They had some fun, back and forth banter – it’s true that laughter is good medicine. Hearing laughter and laughing himself really seems to change his mood. She told us that there will be someone with him all night and through the morning, just to make sure he makes it through the night OK and doesn’t have another fit. I think his fits are brought on when he is all alone, wakes up in the dark and is confused about where he is with no one to help him, or calm him. So – hopefully having Tessa there again until midnight or so and then having a nurse by his side all night will allow him to get a good nights sleep (which I doubt he’s gotten since he was checked in).

It was a long day – I am glad it’s over. Tomorrow I will take mum to Worcester for her follow up appointment, and we will get to have a family reunion with dad and Tess. I can’t keep my eyes open anymore – I’m sure I forgot something, but it’ll have to wait.