Lee here this time. Mike did better today and as a result we're feeling a bit happier. The antibiotics seem to be working, so we're hoping we've avoided the medics having to sample syringe his lungs etc. Today was a relatively more positive day.
We're learning a lot about the pitfalls of the system and can see why friends with children with chronic conditions have to become so expert on the condition and their child's patterns. Mike is so vulnerable, each time he has to shift to a new situation his condition is under threat. We have to know how he needs to be handled to make sure it happens. The nurses are marvellous, but they have to learn how to handle his condition.
The other problem, that we only properly realised last night, is that because our brain runs so much of the body's systems, if it isn't working well, there's a lot of interrelated things that can stuff him up. The chest infection could have been caused by him breathing in some of his food. Apparently we all do that, but coughing fixes it and Mike can't do that all the time. It could be due to the tracheostomy. It could be due to the transfer to Wellington upsetting him. Becuase of the transfer, there were quite a few days this week where he wasn't sat up and that might have caused the lungs to malfunction....... The list goes on.
On the bright side, though Mike's still classified as seriously ill, but he's inching forward in other ways. His eyes are open longer. They usually look fairly vacant, but he can sometimes respond to directions such as 'Turn your head towards Dad, Mike.' He's also moving limbs on the right side a little more. Mike's school friend Kent sent him a lovely little MD player (I hope I've got the term right!) and the first of a series personalised mini discs. I'd get it going for him and at the end of each section say: 'Mike, squeeze my hand if you want some more.' Immediately there'd be a strong squeeze. His reaction has caused me to wonder if its possible to be bored even when you're in a coma.
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10 comments:
Great news! We can all sleep easier tonight. Thanks again for posting the news each evening. I think I may have detected a trend - the longer after 10.30pm the posting - the more difficult the day. Maybe I can graph that one Brycie!!
Love
Mary
Thank you so much for the good news on Mike! Its so great to hear he's getting over the lung infection.
We're also glad you got the MD player!! And that Mike likes listening to it! Kent will be so happy when he reads the blog!
Enjoy the music Mike!
Lots of Love,
Amanda
Settling in takes a while, Mike, and it's so good that you're handling it O.K. T.J. and Andrew paid me a lovely visit yesterday, brought me up-to-date with your progress, ate my chocolate biscuits, met my neighbours and T.J. introduced me to the Duke of Wellington. More about him later! Looking forward to seeing you, love, Your Technically Handicapped Gran.
Sounds good progress, and yes I think he could get bored. Just think of all the new knowledge you will be able to share with Mike!!
Glad to hear that you are learning how to navigate the system.
Gilda
We are all still with you in thought and prayer. Talked to Jan & John in Aus. the other day. They are also monitoring the blog and wish everyone well. Stay strong and kick butt as you need to.
Kay & John
That helps us all feel a little better about Mike's wellbeing at the moment. Hospitals are the only place to be when you need specialist care, but the systems are often so impersonal and disempowering for family members. You are doing so well, Wilkinsons, managing the challenges that you are facing.
See you all sometime at Easter.
Lindsay and Cathy.
Lindsay and Cathy
visiting kent & amanda in osaka
good to read you are doing well happy
keep up the good work
jo-anne
Hi Lee & Bryce, Chris & Sue here, trying to figure out how to communicate by this new means??!! Its good you are all back in Wgtn now. Please know our thoughts are with you all and we're believing with you for Mike's healing. Its good to hear even the small responses he's making, must be very encouraging for you all during this trial.
Phew. Good to know that the antibiotics are kicking in. Thank you for the updates. Your courage is amazing, and as ever - our thoughts are with you.
Love, Carolyn, Grant & fam.
Karl & Margaret Rossiter continue to pray for further signs of progress.
Lisa (& Eddy) have been with us this weekend and have helped me better manage my 'blogging capabilities'. We are pleased that Mike is closer 'to home' and now in the Hutt. I trust the lung condition can - and has been managed - and that Mike continues to respond to all the thoughts for his recovery.
Love and thoughts - Karl & Margaret.
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