Thursday, August 2, 2007

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 !

8 comments:

Anonymous said...

Your words bring tears to my eyes this morning. The fear, the pain, the uncertainty is so real: but the fact that you rest one more time in the loving arms of our Lord and Savior is what just reaches thru the screen and grabs my heart. When we get to heaven and see Dan walking again...many will tell you thanks, for Dan and your whole family faithfullness. I beleive your jouney will be told for generations...and many will draw strength from the fact that you are a normal family that God picked to walk a abnormal path. But thru the up and downs you come back to the fact that God promised that he would never leave or forsake you. Thank you again for opening your life to all of us. Praying in Northern Ohio

Anonymous said...

I was just thinking, "Today is the day they go home" and wondering how you are doing. Please, know we will not stop praying for you "just" because you have moved to another location. God is moving there with you, too, I know you know, but sometimes it helps to hear it said. You have been so faithful and such an encouragement. Dan, your quick wit is a testimony to all the medical personnel you've come in contact with over these months. I'm sure you will stay in their minds since the "normal" reaction they see is anything but up-beat. They are wondering how you do it and what gives you the strength. Keep up the good work! We will continue to care and are here, thinking of you, praying and "present" even though we're far away. May God provide lavishly for each need that comes up. A special hug for each of you.

Janni (Hope this goes through, the other one didn't show up.) :)

Jane-Jane said...

Your family will FOREVER be in my heart and in my prayers... we may never come face to face here on earth, but one day we will be praising Jesus together. God has knitted your entire family into my heart, so as long as I am breathing, I will be praying.

Dan's mom and dad... I will be praying for your physical strength as you enter this new chapter of your lives.

Dan... dude... ya gotta eat some burgers! I'm having pizza tonight for dinner, ya want to join me!?!

Anonymous said...

Dear friends in Christ, I came upon your website via someones post on my nieces website ( www.rachelwade.com )I strongly encourage you to seek the help, experience and wisdom of those who have gone down this road before you. I do realize that no two situations are the same but you may be able to glean some insight from others such as dealing with insurance companys, tricks on how to transport/move your son from point A to point B..... I also encourage you to take care of yourself. Schedule in a date night or an escape night just for the two of you. Go to a spa,a walk or to bed. But most of all continue to pray and love.
God will take care of you through every day

Anonymous said...

Dear Knudsen's,

Each time I see Barry lift Benji into his wheelchair or into bed, I will pray for you and for God to give you physical strength beyond your own so you can care for your beloved Dan. He continues to do that for us.

I'm also praying for a couple of your close friends to learn all about caring for Dan in order to give you a break when you need it. Over the years, one family from our church, and especially their oldest daughter, has taken on that role for us. We say, "She is strong like BULL," so she can lift him and she loves him. She's a gift from God. Benji doesn't need skilled nursing care, just a strong, loving person, but we can appreciate your need for an occasional break. We are counting on God to provide that for you.

Much love, Barry and Mary Alice

elj377 said...

Praying for the new transition in your lives! You all have been such an encouragement to me as I read all about the ups and downs. Dan, keep working hard and never give up!

Sweetness said...

Dan:

SGA is still planning to drop in on Sunday afternoon, after church, if that still works for you guys!!! Will you definitely be home by Sunday? I will try and call early this week.....

Anonymous said...

Still reading your blog every week. Will continue to pray for Dan and the whole family. Appreciate your transparencies and honesty about some of the struggles. The rest of us cannot comprehend, but we still care and will continue to pray along with praying for a friend who has also been paralyzed for about 7 years.
How wonderful that God cares so much for each of us, no matter whether young or old, strong or frail.
Friends in KS