7.59am Monday morning. When I left the hospital early this morning, she was still sleeping. She pulled (as usual, by now) the feeding tube, looked happy, and fell asleep. Today will be a busy day so I hope that yesterdays rest has meant she is ready.
5.14pm Monday afternoon. Today Jaan has been wake from 8.30am until 4.30pm. That is very very good. If she is sleeping all day it is hard to do necessary therapy. She walked a bit this morning (you have to understand that this is with very much assistance), ate a little bit and then did some balance exercises. Around noon she got a 1.5h manicure/pedicure and then it all started again in the afternoon. Later a few friends came for a visit and she stayed awake just until half an hour ago.
Feeding tube wise, there is still quite some effort which needs to be made before this can be taken away. I now, from talking to the doctors, don't think it will be removed until early next week. The problem is that she needs to get around 1,000cal/day, which translates to around 1l of yuckie fluid through the feeding tube. As soon as she can get this down on her own, the tube is gone. For this to happen, you need to be awake, so todays progress of being awake for 8h or so is great. More later
9.19pm Monday evening. I just returned from Gleneagles and I think Jaana has put a lot of effort into this day. She has been awake a lot and when I came there they wanted to feed her again. I had to wake her up (very difficult) and after a short stroll in the wheelchair, she managed to eat around 30ml soup. She was awake for another hour and when I left she was sleeping heavily. I hope she has sweet dreams and gets some good rest, 'cause it is all happening tomorrow again! Good work!
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6 comments:
hej Jaana och Jorgen,
skickar en halsning fran Shanghai. Som varje dag laser vi era forehavanden och dom framsteg ni gor tillsammans. Kampa pa och tanker alltsom oftast pa er!!
Jattekramar fran Jannice o Peter
Happy to read about the steady progress. I can imagine that Jaana is pretty fed up with that feeding tube. You better make some of your delicious BBQ for her once she's through this ordeal.
I can certainly relate to your post Saturday about feeling vulnerable as an expat in a far away country. Count your blessings with your family and friends standing by your side in this.
Olle & Vannessa
Go´kväll Jörgen,
En ny vecka - nya övningar. Du gör en enorm insats. Jaana har ett stort stöd i dig.
Hoppas du kan sova.
God natt
Kram Mamma
Tjena Jaana o Jörgen,
Den här läkeprocessen verkar vara lite som trapporna på lustiga huset på Grönan när vi var små. Två steg upp-ett steg bak-två steg upp sedan stå still en stund sen rätt var det är är man uppe.
Lungt och metodisk hela vägen upp även om det blir lite neråkning ibland. Ni är starka och duktiga båda två. Hoppas att du blir av med den där äckliga nässlangen å det snaraste den verkar vara riktigt jobbig.
Bis morgen
Peter o Louise
Hi Jaana and Jorgen,
Just catching up with the last few days as we were away for the weekend. I must say that Jaana seems to be sending out a very clear message about the feeding tube - it has to go. Hang in there Jaana and soon it will be gone. I guess the trade off for keeping it in a bit longer is that it seems you are making some really wonderful progress in your recovery and are tired and may not have the desire or energy to eat the amount you are supposed to eat everyday. I hope this will improve for you as well.
Thinking of you all everyday. Keep going strong Jaana. Keep her going Jörgen and kids!!
Love, xo
Missy, Courtney, Eric and Freya
Hi Jorgen --
I am so glad to be inspired by you on this nice Monday here in Chicago. I hope you are going to have a fruitful, productive and progressive day, week and month with Jaana and the kids!
There is no answer except to think positively, and I can tell you that does yield unimaginable results. Just know the possibilities!!!
Your experience each day is like marriage and love in general. You can look at it each minute and analyze it, or settle in for the long run. My choice is to enjoy each minute yet step back and look at things over the long run. Measure progress not only from each new thing that Jaana can do and has done, but also for what it allows you to experience that would not have happened before and how it has changed your perspective.
When you have a moment, read to Jaana my greetings. Tell her that I have a big smile on my face and that I am sending her a big "air" hug from Chicago. Then know that the smile and hug are here for you too.
Any time I have had troubles and have known that the odds were against me, it is the constant support of Rafer and our families and friends that have made me take that sometimes hard task of putting one foot in front of the other and move forward. I know how rewarding it is to have you and other friends there to cheer her on. That feeling of closeness is something in and of itself to cherish.
Know too that times like these make everything all the better. A glass of ice water will never taste better. Feeling the air outside of the hospital will never be better. Having the opportunity to smile is even better that before.
The opportunity to experience it again -- no -- to demand to experience it again -- is something wonderful in and of itself.
You two are very special to us and our every positive thoughts and wishes are headed your way.
Now, on for the memory test -- See if Jaana can remember back to 1994 when we were all at Octoberfest. Rafer and I were engaged, but not yet married. Were you married then? (We'll use that as Question #1 on the memory test.) Who else was there with us? I remember Peter and Lynne, Pat's friend Frank, Liam and others. Maybe you two will remember more together.
I remember the hotel we stayed at. As I recall, they had the best beer I can ever remember tasting but then it was the slowest beer pouring I can ever remember as well.
I remember that the hotel had breakfast included but that Rafer and I never made it to breakfast. (Some things never change!)
I remember the jovial beer tents teeming with merriment. Then I remember oompah bands and lederhousen, dancing and pretzels and steaming chicken and them some more beer of course.
Good friends and good times.
Things have changed since then. We're now married 12 years and we don't see some of our friends as much as we would like. That doesn't change our memories or our good feelings for you.
Chin up. Smile. Move forward.
We will write again soon.
xo
Marla & Rafer
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