2nd Month Recap

If you had told US a year ago .....

.... that we would be caring for our 20 yr. old son full time, spending most of our time in hospitals and the rehab center with lots of medical equipment AND knowing what it does and how it all works, talking medical care and terms, like ventilators, spinal cord injuries, quadriplegic as everyday language, living out of 3 places all at once, spending less than 2 days a week at your home, sharing that home with your spouse less than 3 times a month, selling of your home, modifying your somewhat comfortable life, noticing every person and thing in the handicap world, applying for permanent disability status with Social Security for one of your own kids, [and the list goes on] ... well, you would say " I'LL PASS", as all of you would be doing the same thing that Debbie and I have doing since March 9th, 2007.

If YOU had been told a year ago .....

... that a simple tumbling accident would leave you paralyzed, on a ventilator, living in a hospital and rehab center, with high temperatures, headaches, sleepless nights, a nasty back sore, and the feeling that each time you wake you feel that you are still buried alive in a sand dune, with only your head exposed and moving, unable to speak and eat without lots of effort, feeling like you need more oxygen, watching other people care for your every need, knowing that life is this way because of you, listening to medical people, family members, college buddies and friends pass by you, trying to converse with you, but usually talking about you and your situation. That has been Dan's life since March 9th, 2007.

It has been 2 months since we got "THAT" phone call, and our life has taken a bit of a curve.

While on a missions trip in Puebla, Mexico with Cedarville University, Dan, our youngest son, attempted a back flip and severely injured his C2 vertebrae [& some to his C1] . This severe contusion to his spinal cord caused an instant paralyses from his neck down, and the inability for him to breath. It is a miracle that he is still alive. 1st Minutes After the Accident

He was rushed to a private hospital, were he was stabilized and received excellent trauma care. Deb and I were by his side early the next morning. He was still paralyzed and on a ventilator for breathing. We were taken care of by the missionary community who never left our side.

Dan was med-evacuated by air 3 days later to the Neurological ICU at Northwestern Memorial Hospital in Chicago, where he stayed for 2 weeks. Besides a ventilator for his breathing, he received a halo to support his fractured vertebrae, and later surgery to place a screw in his C2 vertebrae which prevented slippage when he sat up. They also added a tracheotomy for better breathing and care, and a feeding tube in his stomach. He lost 35 pounds.

He was transferred to the Rehabilitation Institute of Chicago just down the street from NMH, and after a few rough weeks of high temperatures, headaches, sleepless nights, a nasty back sore from the evacuation, and other spinal related issues he seems to be gaining ground with the mental game. At the first full evaluation, the doctors and therapists said that it will take between 3 to 5 months to get Dan ready for life outside of the RIC. Dan said it best with "nothing I didn't already know". We have a long way to go.

There have been numerous tests regarding any feeling in his limbs, and detections for any breathing on his own. The results are always negative, no change in his quadriplegic, vent-dependent status . He has his trach cuff down more than not, is eating food by mouth, has been out side the center in his power wheelchair, and has gained about 5 pounds back. He still has restless nights, with only about 4-5 hours of sound sleep. The sore on his lower back has not gotten better. More on that at a later date.

Job expresses some thoughts of ours at this time in our life. 6:10 At least I can take comfort in this: Despite the pain, I have not denied the words of the Holy One.11 But I don’t have the strength to endure.

Thank you for your love, care and support, but mostly for your prayers. We so need God's help each minute of every day, and especially nights.

We are all slowly learning how to live new life as it is uncharted territory for the Knudsen family. If we had only been told...

Selling Our Home - HELP NEEDED !!!

After careful review of our Dan's future condition and housing needs, talking with contractors and handicap home specialists, it has been determined that it would be better to sell our current home and purchase a ranch style home. You see, this house has 4 levels, and as it was great for "hide-n- seek" or air gun wars, it is not for anyone in a wheel chair. They would be effectively confined to one level or area of home living.

Many of you have asked for tangible ways to help. SO... WE NEED HELP getting this place ready to sell. If this type of help is not possible for you at this time, [like you live in Mexico or Ohio, etc] pray and know that there will be many other opportunities to assist with Dan's care.

I have attached and modified a letter from Alan, our daughter-in-law's father. Read and consider if this is for you, at this time.
(we do share the cutest twin grand babies, don't we Alan?!! :) :)

Bill,

The work project list consists of 60 different " to do" items, some large
and some minor, in the following areas.

Painting, carpentry/trim work, electrical, plumbing, carpeting, vinyl flooring & trim, hardware replacement, garage clean out, pre-packing,
lots of yard work, [raking, mulching, weeding and planting of flowers].

Tentative work dates are May 11th & 12th, 18th & 19th.

Those who would like to help financially should donate to the Harvest Bible Chapel address on your blog.
Harvest Bible Chapel - Att: Drew Schmitz - 1000 N. Randall Rd - Elgin, IL 60123
[check memo: "for Dan Knudsen"]

The e-mail account for the volunteers to use is
amschmanke@gmail.com

Thanks Bill.
Alan

FYI - Our house will not be listed on the open market until after our daughter's June 16th wedding. It is okay to let people know of its future availability, AND likewise we are looking for a ranch home or a lot in the Batavia to Elgin area - west of the river to Rt 47.

Comments are closed. Field any questions to Alan, that you feel might need to be addressed to everyone. Thanks.

A Great Weekend with My Brother

Well I got to spend a longer weekend with Dan than I ever have and let me tell you - we had fun! Usually when Dan and I are together it consists of some talking (no, not with his voice) and me trying to convince him to do something fun, but him being too tired so we sit and channel surf.

Well...this weekend was different! Because Dan had such a great week, he is now on a roll! On Saturday his Physical Therapy was at 10:30am - so naturally he was up in his chair, dressed, ready to go with his cuff down by 10:15! The schedule worked out so that he was able to have speech therapy right after and that consisted of him trying different foods (he had several spoonfuls of ice cream and ate a stale Cheetos - I got him a pretzel instead!) Then I asked if he wanted to stay there or go back to his room (usually he is ready to get back in bed at this point) He wanted to walk. So walk we did - for 2 hours! They told me that 10 times around the floor is 1 mile - so I think we went about 2 miles. Great and much needed exercise for Jen! With a record 6+ hours in his chair and his cuff down for about 13 hours, Dan was ready to crash.

Sunday was very much the same - cuff down at 8am, ready to go in his wheelchair for friends from school visiting and more walking. It is so nice for Dan (and for me) to get out of the room; having air blow on you while you're moving is so much better than laying in a bed in a stuffy room. Dan and I also discovered that we like the chair on the fastest speed!
Walking around the floor is nice, just not quite good enough. The Dr. mentioned below came to check on Dan and after chatting, then pausing said, "Have you been outside yet?" Naturally my heart leaped! Sure enough, within half an hour he had arranged for Respiratory to come down with us and Dan got to smell fresh air for the first time in 2 months! We were only out for about 10 minutes because it was chilly and the doctor wanted to watch out for Dan, but I think he could have stayed out much longer! Also, because Dad fully knows how to operate Dans support equipment, the ventilator, lowering the cuff, changing the trach, using the portable suction machine, and knows how to use the mouth vent bag him and mom are able to take Dan out without medical staff with them, which means - Dan will be out a LOT more!

It was such a great weekend, filled with much more hard work by Dan. He is drinking a lot more by mouth and solid foods may be just around the corner. He has started gaining some weight, enjoys being in his wheelchair, has his cuff down all the time, and reminds me that he needs protein shakes or that I or the nurse have to do something that we forgot about!

People LOVE hearing Dan's voice; so many of the nurses and PCT's commented, "whoa! I've never heard your voice before!" One even got teary eyed! Our thoughts exactly!

I am SO proud of Dan and how hard he has worked and how much progress he has made so quickly, especially this past week. We're still working on getting him more comfortable and sleeping more that 4-5 hours at night; but from here on out - things are only looking up! Next step - Dan, what meal are you going to have at the wedding? :-D

Love, Your big sister Jen!

Cuff Down and Speaking and Wheelchair ... Oh My!

WHAT A GREAT WEEK WE'VE HAD WITH DAN.

It started on Tuesday with Dan getting a different resident Dr., who seems to have taken a great interest in Dan. He said he had not heard Dan's voice, and so we proceeded to "put his cuff down". *[see below] When this is done, there is about 3-4 minutes of secretions that have to be suctioned out of his mouth and lungs, as Dan can't cough on his own --- bottom line --- it's a difficult process to put the cuff up and down. Most of us have been trained to do this "cuff down" procedure, but it can be an anxious time for all.

After working through the above change, Dan kept his cuff down for 5 [yes five] hours that afternoon. It might have helped that friends Jen and Issac were visiting him. His previous record time was 1.5 hours. Well Wednesday, he didn't want it down and so we didn't post the good news. [Caution vs Excitement]

On Thursday he had his cuff down 6 hours, Friday[in 2 different segments] 12 hours, and today it's been down since 9:30 am. He even stated that he might like to get approval from his Dr. to keep it down overnight. That's big.

Dan has responded to his weekly goals, with sitting up in his chair for 3-6 hours a day, and doing more with his swallowing of different puree and soft foods.

This is far more of a mental challenge vs physical than any of us could have imagined. We continue to dialog with Dan about his thoughts and his physical status.

Continue to pray for the "mental challenges" that face Dan each day, and let others in your churches and prayer groups know. We feel that Dan might be turning a corner in his recovery.

Know that we think of and appreciate all of you, and how you continue to help and comfort us with your love, gifts and prayers.


*[Cuff technical jargon - meant to be read fast]
There is a small inflatable ring or "cuff" that holds the trach in place. Usually it is inflated so all of the ventilator air goes down into the lungs. When air is taken out of the "cuff", it allows air to flow to the lungs AND also upward past the "cuff" and the larynx, allowing the person to speak.

Now since machine breath is a volume of 1000 and 10 times a minute, [natural is 600 vol. 6-8x], the air flowing into the mouth or nose can be annoying. [Like having some one blow air in your face.] Dan prevents this by closing his larynx, and the air goes back out his breathing tube. So although it works a bit differently than before, when Dan "puts his cuff down", he can speak, and he says it makes him less anxious.

HAPPY BIRTHDAY TWINS

"Feliz Cumpleaños a ti,

Feliz Cumpleaños a ti,
Feliz Cumpleaños a Gabri and Addy,
Feliz Cumpleaños a ti"

No, we are not talking about Mike and Dan, but Gabri and Addy!

The Knudsen twin thing continues with our Guatamala twin grand daughters. Grandma Deb visited them last November with our daughter in law Em, and we are still awaiting for their adoption to the USA.

Much prayer is needed for them to get home very soon, without any further government delays.

I can't wait to hold them, I cant wait to steal them for a day and go shopping, [yes even baby girls love to shop... everyone knows that] and I can't wait to spoil them almost rotten, and know for sure who is who. [it took me too many years with M & D] AND I just know they will want to go cycling for hours and hours with Guillermo Abuelito [Grandpa Bill]


I know that we are shameless talking about our Cedarville U connection, but the twins have an impressive list of CU relatives, who are grads or current students. Their dad Matt '05, uncles Josh '05, Mike '08 , Dan '08+, and Ben '10, then aunts Jen '06, Sara '06 and and a few more relatives after an event in June, uncle Jeff '05, and his sibs Jodi '06, and Justin '08.
[Did I forget anyone?]

Going Going Gone

Exciting news to report:

Dan's halo is off!

Bill called Dan's neurosurgeon last week to inquire about when the halo would come off; that started the staff here to ask about the timing [sooner is better than later]; soon x-rays were ordered; the neurosurgeon viewed them, came over for a visit and just removed it!

Dan will wear a neck brace for about a month, until he builds up his neck muscles, but he already feels better. (and of course, Mom gave him his big hug.)

Thank you for praying for us. We know that we are not the only hurting people in this world -- many face much greater aches that we have, so knowing that you think of us, makes us feel quite special.

He ate some banana

There have been gradual pushes in Dan's eating. He had his "cookie test" at Northwestern that said he could swallow liquids and milkshake but not puddings or cookies. So for the past 2 weeks, his speech therapist comes in each day with a tray of many various foods and has been challenging him to taste 10 different foods each day. Dan has been taking tiny samples of applesauce, chocolate pudding, peanut butter, and various condiments and flavored drinks for the past week.

Nothing tastes the same in hospitals and even liquids seem be difficult to swallow at times. He really cannot choke on any food, because of the trach being in the way, but as are most things with spinal cord patients, the mental process is just as important as the physical.

Well, a banana that has been sitting on the tray for 2 days finally got the interest of Dan. When asked if he wanted it smashed up, like a puree, he said "no, ill just chew it" and he proceeded to chew AND swallow 4 thin slices of a banana. Yes!!! His monkey [does he have a name?] , still hanging around on his room, let out a shriek of eeeeh! eeeeh! eeeeh! too.

Officially he has been taken off a liquid only diet, his weight loss has stabilized, and we continue to supplement his diet with liquid protein and muscle building drinks, usually taken via his stomach feeding tube.

Continue to pray for Dan to accept his new life, [well each of us for that matter] and the daily goals set before him. God Bless each of you.