preparing to go home

Yes that time has finally come to say good by to the hospital / rehab chapter in our lives. Dan should be released in a matter of days.

There are a few issues that are preventing his departure, such as:

• still not being up to the physical level he was for his sister's wedding in June.
• he has had elevated calcium level from calcium loss out of of the bones; this problem is to be expected for a SCI person.
• tests and two special flushing have been done with little results,
  
• thus he had a 4 hour "infusion" of Pamipronate to stop the spill of calcium into his blood. - this is a serious procedure with the heart being monitored too.
  
• he has not been in a power chair since mid June.
  
• he eats some, but no beefy burgers, shakes or such to fatten him up.
  
• finalizing and delivering his equipment, bed, power chair, wheel chair, shower chair, vents and other breathing equipment.
  

His temporary room at home is about 95% ready. Some deliveries have been made even as I type, and family and friends are doing last minute cleaning, and stocking of shelves. There was a 5 hour training for us about his ventilator. What stuck out you ask?? "after 4 hours of no electricity, you must take Dan and find power someplace else." Do I hear back up generator at the new place?

On a brighter note:

• Dan feels and looks and acts much better for the most part. (Today is an exception; fever, severe headache, and will probably be in bed all day :(
  
• He has an occasional off day, but his quick humor is enjoyed by the doctors, nurses and PCT's
• and we got outside the other day, for the first time in a month.
• he is not bothered by how he looks in public; vent, tubes and all.
  

We really are glad to be getting back home together. There is not a flow chart big enough to track the past 5 months; where all 8 of us K's have lived and "who's with Dan tonight", etc. and the logistics of living in 3 places at once. Of course the insurance company wants Dan out, of the RIC too. [and tried unsuccessfully a few weeks ago - LOL] They are scurrying to get Dans durable equipment to the house, and did finally agree to provide a few hours of skilled nursing for a limited number of weeks, but the truth is ... we are on our own.

Dan will eventually be eligible for state funds, but those will not be available for many months. We seldom mention the financial aspect and where to find help for part of his care, but it has made us physically ill at times dealing with all of this. Being told that your son can be released to custodial care [ie. not needing any skilled nursing care] and other silly suggestions on how to live with handicap son, has been ... just plain offensive. We have to remind ourselves of a recent sermon, in which our pastor said about impossible situations "to put our hands down, rest and know that God is still in control of our lives." [I need this reminder often.]

Not being able to ever leave Dan alone in the house at any time, plays in the back of our minds. Those who have been visited and have helped with Dan's care, know 1st hand of his high level of needs. It still takes a nurse, a PCT and one of us to give Dan a shower. I transferred him 5 times the other day, and my back was feeling it. We know this is our son, our Knudsen family's new life circumstance, and do not expect help from anyone. The reality is, that NO family can do this entirely on their own.

Please know that we so value each one who continue to help carry our burdens, by watching, visiting, giving, calling, cleaning, painting, planting, volunteering, emailing word of encouragement and PRAYING.

You tell us that it is YOUR JOY to help out ... we believe it.

WE LOVE YOU !