Sunday: Ane is at home doing much better

A moved home from rehab on November 3rd after four and a half months of intensive training.  H, S and I were on vacation in Spain when she returned, but her sister, mom and dad taking turns being with her the first days.

Today, Sunday, we can look back on the first first week of daily life together since June 23rd when she had her stroke.  Living together as a family together again is great, but the road ahead is long and filled with training -- physical therapy, speech, occupational and visual therapy, and training -- walking, helping out at home etc.

A is far from fully recovered.  She is still suffering from severe pains in her right eye, her face is still partially paralyzed, her left side numb, reading will cause fatigue and dizziness, and we are unsure if her balance is off because of the double vision or if her sense of balance is directly affected by the stroke.  She will go back for another three weeks of rehab starting December 2nd.

But the good news is that A is able to move around the house without help.  We had handrails put up while we were still in NJ, so she can walk stairs, dress herself, make food, fetch the newspaper, but she can only read the headlines.   Tests last week showed that the clot in her leg is gone as is any trace of the bleeding in the brain.

Her vision gets better if she wears goggles -- the kind you wear when you swim -- and when in water or in horizontal positions, her vision is less of a problem.

In terms of her mood -- she is getting much better.  For a while she would be very prone to crying, but that has subsided.  She is quite happy to be home, as are we all.    But it is still not the kind of life we used to have -- A is still a patient, and having a patient in the family is quite different from being a fully functional family.

Thank you for letters, emails and text messages.  We have felt incredible support from all our friends in Norway and elsewhere.  I will continue to blog about our recovery -- mostly in Norwegian -- but with tweets in English.

C

Letter from Cy

On Fri, Aug 21, 2009 at 7:37 AM, Cy <xxx@xxxxx.com> wrote:

hi c!

you are too generous to write me such a long and newsy e-mail; thank you!

did i see that A wrote something on the blog? i was amazed! that's new! and walking with poles; that's also new! she couldn't manage it when she was here.

interesting that she has only 1 month sentence in the big house; sounds like detox! i assume she'll have home care or outpatient rehab; that's also very impressive. she's obviously going to come around ... her 1 year in an altered universe ... wonder what she'll end up doing with this little experience.

she has an mri coming up soon and i'm most interested in tracking this. as mentioned, i have dual obsessions with "reabsorption of the clot" and "christmas" ... laypeople are such dopes, right?

and, btw, i like my little translation; "Man marks the more that we have been out in stormy weather before. If I is in your face?" I then continued on her face, on the right side light lambs that have been much better, but that still does not sit with. 'No, you're fine.' "

very poetic!!!!

Cy

PS: You will like this:

Healthcare Napkins All

View more documents from Dan Roam.

Friday: Another letter/blog post from C.

Dear Cy -- great to hear from you.

Things are much better now -- or at least I am calmer knowing that A is at Sunnaas, supposedly Norway´s leading rehab hospital. But I suspect, unfortunately, that even at Sunnaas, summer vacation is taking its toll, leaving the hospital with reduced capacity at a time of the year when the demand for health services is probably -- if anything -- higher than during the winter.

But the view is stunning, she has a single room, the staff is friendly and the air is fresh. We are not talking five star hotel rooms, but the standard is -- both in terms of the facilities and the food, is, shall we say, frugal and in line with what you would expect in a country with national health coverage for all. We are used to this, and in a weird sense, most Norwegians seem to pride themselves on the frugality with which the Norwegian system operates.

A is recovering slowly. Her speech is much better, easier to understand, but she is still struggling with her eyes, still unable to read. She now walks with poles which makes it easier for her to keep her balance and to excercise on her own without a trainer.

Sunnaas is about one hour from Oslo by car, but you can take a boat and bus which will take 40 minutes. It looks like she will have visitors every day, but you know her -- she is impatient, and I fear that she is bored silly at the moment. She has asked visitors to bring her "real" food because she deplores hospitalfood. Who doesn´t.

The weather has been beatiful with warm weather interrupted by rain. This afternoon we are picking up A to take her to the summer house where sushi will be served.

We miss you and hope all is well with you, Cl and the kids. Hope you are surviving the hoopla of DC politics too.

Thanks for the translation of a previous blog. What a crappy translation. It is going to take a while before computers can replace translators, that´s for sure.

Bearhugs from C and the girls.

On Thu, Aug 20, 2009 at 5:56 PM, Cy <XXX@XXXX.com> wrote:

C, you write beautifully and i'm so pleased to hear that A is well situated and that you are content. you'll love my translations; they're almost as good as the original, i'm sure! sample: "Then further in the beautiful sunshine along Bunn Fjorden while we talked about the battle, our new conversation. 'Bashir is actually much more serious than I have been aware of,' said A. "G told me also that it is not uncommon with samlivsbrudd; that the healthy partner is from the blow hit, and I can also imagine that it can be the reverse - that those who have fallen ill suddenly sees his life with other eyes and wonder what you are doing, "I said. "Man marks the more that we have been out in stormy weather before. If I is in your face?" I then continued on her face, on the right side light lambs that have been much better, but that still does not sit with. 'No, you're fine.' "

Saturday: The day was too short

Dear Cy -- today was too short and hectic for me to call you. Nothing important - A is doing steady progress, she can almost walk without any hand holding. Her eye is better, the coordination of her vision is coming along, and today we swam in a friends pool. Very nice. She is at home for the weekend, will go back to Ullevål tomorrow night (after more pool training) while she awaits a bed at a rehab place nearby. I am very impatient, but she is doing good progress and she is in good spirits.

Will call you when I have time. Give my best to Cl.


Best regards, C

Wednesday

Dear XXX

Later on Monday, A got herself a bed in a double room. She was able to get training that day, and I had a good conversation with the responsible physiciain. The blog has been quite a powerful tool too. Within ten minutes of me blogging about her being placed in a corridor, a friend of ours who works at the hospital as an administrator, had sent me links to A´s patient rights and another friend of A´s, a journalist, at one of the big newspapers sent me an email. It turns out that all patients have the right to one responsible physician who coordinates the care.

The conversation with the Norwegian doctor, was good. We reviewed all the documents I had brought from New Jersey. An older woman with her specialty in internal medicinde, she commented on the tests. "No need to do any of these tests again. A lot of good work has been done already," she said while glancing over the pages I was giving her. She was the first doctor I had met who did not want to do her own tests. I told her about the head stand A did earlier in the day on the day she had the stroke -- June 23rd. "It sounds like that could trigger something, given that there was something there to be triggered," she said. "When you look at her values, it is clear that something is going on, but none of the values are abnormal, they are just slightly outside what we would expect. Very often, a stroke is a result of drug use -- e.g. cocaine, it could be alcohol, or, what it sounds like in this case -- just bad luck. We usually administrer a blood thinner -- we use Fragmin -- for the first three months. Having had a stroke in itself increases makes you more prone to have another stroke, but if so, it usually takes place within three months of the first stroke. I suggest we do another MRI and angiogram towards the end of August. I think the main thing now is to ensure that she gets enough rest, that she gets plenty of rehabilitation training, and that we can get her to a more permanent location. After all, this is an acute unit where we are required by law to admit everyone with a stroke from a certain region. This is one of the reasons we shuffle patients around. Of course, having a large number of people on vacation does not help even though in theory we are supposed to be fully staffed at all times."

Yesterday A was better. I think I see improvements every day now. Small improvements, but nonetheless, improvements. She is starting to walk with more confidence -- still requiring assistance, still dizzy and prone to fall if not assisted, but she walks better. Her face is still asymetrical and botox-like on the right side, she still has an infection in her eye, but less so than what was the case on Sunday. She is in good spirits, chatting with the other patients, being on a first name basis with staff, and she is very motivated to be transferred to a rehab institution, something we expect will happen next week. Al in all, I am cautiously optimistic about the situation.

A and H have been on my fader´s boat since yesterday. They start school on Monday. S is quite upset by not having her mother around. H is less willing to admit that she misses her. I think we will find a nice routine during A´s absence from the household.

I will try to post these messages regularily in order to keep you posted of A´s progress. You can also follow the Twitter feeds which will be in English.

Best regards, C.

Monday -- letter to Cy

Dear Cy --

Well, we are now learning about the differences between the Norwegian and the US system. So far, given that we are insured, I would take a bed in New Jersey anytime over what we are seeing at this section at Ullevål University Hospital, supposed to be one of the leading hospitals in this small oil-rich nation of 4.5 million people -- all covered by national health insurance paid for but not always provided for by the government.

As I told you, A was able to come home on leave of absence from the hospital on Friday. When we returned on Sunday she no longer had a room, and it was made clear to us that taking the patient home involved the risk of losing your place. We were told that her previous room was occupied by someone worse off than her, and her bed and personal belongings were moved to the gym where she were to spend the night. When I returned, very concerned this morning, they had moved her to the corridor (see picture in previous post). As she was laying there, a nurse came by to tell her that she should watch her belongings. "Several drug addicts pass through here, and they might steal any valuables they can lay their hands on," she told A. There is no security here, and anyone can walk right by.

When I asked the doctor in charge of A´s care today -- a very nice woman in her late fifties -- and asked her if it is not irresponsible to place a 43 year old stroke patient with an eye infection in the corridor (right under a hard, fluorecent light), she agreed in "principle" but told me that the administration has calculated in corridor beds as part of their capacity -- evidently to save money. They could give us no clear answers to when she can be moved to a real rehab place, but assured me that as long as she was admitted here they are responsible for her. It is pretty clear to me that responsiblity is a meaningless term when she is given irresponsible treatment, and thought, maybe this is the downside of limited liability; the hospital runs no real risk since the liability is capped upwards and since there are no punitive damages awarded for malpractice here.

In addition to spending time in the corridor, she is also not given a schedule for training as we were used to from NJ. Instead we are told that they wil "come" when they have time" and that we will learn more later.

Having said all this, I have to say that everyone here is real nice - both the nurses and the doctors -- and their intentions are all good (but maybe of the kind used to pave the road to hell). But I can´t help but getting this sense that the professionals see themselves fighting against the system, and that the administrators are the enemy -- headed by the a politician evidently without much trust -- someone seen as out to show good economic governance and budgetary control. Hiding costs is not ok when the hidden costs must be paid for in terms of slower recovery, less complete recovery -- on the surface solved, but in reality just moved into the future -- resulting in more stress and more costs for everyone involved including our kids.

I will write more later, and when I told the doctor that I am now blogging in English, she said she would welcome an article in the New York Times about the conditions here. So would I.