Pacing

pacing break during the Cubs

game with uncle David

IT'S WORKING!!!

Sorry to keep you in suspense. The morning went like this: Phone call that the nurse won't be here today, [okay], then Josh, a friend from CU, dropped in for a visit, and Grandma & Grandpa J. are here as they didn't want to miss anything, and "get the door... oh it's lunchtime already." Rhonda was here for lunch help, "Someone answer the phone for me." Dan is finally dressed, and waiting for me to get all of his equipment ready, "Hey Josh, can you help Ambu Dan for his suctioning". [Everyone needs to know how to Ambu.] Okay, I think we're ready to start.

We have activated the pacer 5 times today, with 1 hour breaks in between to rest his diaphragm. The first 2 times for 3 minutes and then only 1 minute had Dan's oxygen level drop too fast from 100 or 99 [his usual] to 90. So we called the "technical help desk", aka Dr. Onders' assistant in Cleveland. She had us do a few things differently for now, like keep the trach cap off so that the exhale air does not have to go all the way through the mouth or nose cavities to get out, thus making it easier for the pacer and keeping his O2 level higher. Try the back up unit. Does he need to be suctioned? Use of the diaphragm is loosening up secretions that have built up in his lungs. [That's good]

We stick with the original unit, and have activated the DPS 9 times, each 7 to 9 minutes each, with his O2 level only dropped 2-4 points. Dan is not able to talk as loud as when he is on the vent, but that will improve over time. He is barely able to detect it breathing, but knows something is going on down there. His length of time gets lower later in the evening.

Stay tuned.

Saturday Updates

We've done 8 sessions of pacing today. We are trying different things, like trach cap on or off, breathing through the mouth vs. the nose vs. the trach hole, deep suctioning of his trach and passage way. 11 - 13 minute pacing is the average. Who cares about this pacing stuff anyway, the Cubs are still in 1st place :D

Sunday Updates

Today we started out [noon] with a 28 minute pacing session. His volume stayed at 600 [800 on the vent-cuff up] and his oxygen was at 98 [usually 99-100]. That was encouraging, but he was in his bed, lying slightly elevated. hmmm ?? 2 other sessions today have only resulted in same stats as yesterday.

IT'S WORKING!!!

Dan with his pacer unit, attached to the wires in his chest.
There is a oxygen meter clipped to his right finger. Press the 2 blue buttons to turn it on, and it's sending electronic impulses to his diaphragm, 12 a minute. You can also see 1 of the 4 surgery entry ways that Dr. Ray Onders used for placement of the wires. He wears a waist binder for better blood pressure control and to keep the diaphragm pushing UP and not down or out. Cool stuff.

Thanks for the time to checkinondan.

(We'll keep adding to this blog through Sunday)

computer connection

As computers are fast,
some computer services and friends are faster.

This is a live photo of Dan being setup with his computer, his connection to the world outside this house, his CU email, his facebook, his IM chat, his online college classes [starting soon] and on it goes. He remembers most of what he learned at the RIC tech therapy. And away he goes.

His computer sessions sound like this:
"start listening, open window, novell, mouse click, show numbers, 24, login, tab, mouse grid, 1, mousegrid, 5 [tells the mouse to move to a certain location on a page] open, dknudsen, tab, letters, delete that, back space, click right, show numbers, show speech recognition, inbox"

It took all of that last segment just to open his email. Longer than the few clicks and passwords that you and I use, but it works. Dan is glad to be "doing something" even if it is wading through 30+ "beginning weeks of college" emails, [CU has kept his same email account open, and he prefers not to give it out to the world - LOL], but he enjoys knowing what's going on at the 'ville. Cedarville University that is. He has been laughing and commenting on a few of the emails and videos.

Some dear friends, Alan & Marty donated an unused laptop, and Josh [CU '05] and the company Signature Tech Studio did all programing and set up this morning. I told you it was fast. Windows Vista has a voice recognition program in it The joust has been purchased and will help with some mouse applications. A wireless headset will be purchased so that he can move away from the computer (no hands to disconnect the cord :)

Other people volunteered to help with getting Dan set up, programming, etc, and we will call on you in the future.
Our lives are always up in the air, and as we try to use all who volunteer things, it sometimes is just the timing of the request or that you sent us a second request that brings action.

Thank you for the overwhelming support, notes, money, that you have provided. You uplift and overwhelm us, especially when we are down from dealing with an insurance administrator, the house, "who's stopping by today", food and equipment, or just Dan's day-to-day care and needs.

BREATHING AGAIN

When Dan's vent tubes come off his trach, it's because he is getting secretions suctioned out of his lungs or changing between his ventilator units [one for his bed, one for his chair]. It's only off for a few seconds, hopefully before his alarm goes off. Yesterday I took his vent tube off and watched along with the doctors as Dan's system was tested out.

IT WORKS ... HE CAN BREATHE AGAIN ON HIS OWN.

He says it feels different, but GOOD or "Sweet!"

Surgery was a success, he was alert and talking AND hungry. He is the 38th Spinal Cord Injury patient [50th recipient nationwide] , to be fitted with a Diaphragm Pacer. He now has 5 special wires that were attached to his diaphragm , one being the ground wire, that are sticking out of his chest. A walkie talkie size control unit hangs on his side, giving him the opportunity to breath "normally" once again. Biotechnology at it's best.

I am headed to the hospital to be further trained on use of this wonderful life giving device, developed by Dr. Ray Onders and Synapse Biomedical at the University Hospitals Case Medical Center. His dual controls [redundant system] will be programed and we will head home early this afternoon, but will not have to return next weekend. Although we have tested and know the units work, regular activation will not begin until next Friday.

Should I sell tickets for the grand activation and unveiling?

This is a gradual activation of pacing with 15 to 30 minutes on and 60 minutes off, to give the diaphragm rest, as it develops weakness within 3 days of not working. Sort of like getting back to the gym after a 5 month absence. The average full time use of the unit takes about 7 weeks.

Dan also is being trained to do "frog breathing" which is gulping air through the mouth, to sustain life. SPI / DPS recipients are taught this method of breathing so they can help keep themselves alive in case of an emergency. Some can do this for an hour or so. Dan did this Friday for 2 minutes, before getting light headed. He was previously told that he had no chance of breathing on his own, but the DPS has actually helped some people to get off any breathing system because of how it works and retrains the diaphragm muscle. Amazing device. [Thank you God for giving men the ability to invent and develop such a wonderful device. ]

More info later, time to rock n roll. Thanks, as always, for being our prayer support during these exciting days.

Pain

Please pray for Bill -- I didn't really believe it would happen, but his back went out. Because he's been lifting Dan every day, today it all "crashed." He is hardly able to walk or even sit. He's not sure if he should find a chiropractor in Cleveland or wait until he gets home.

I am not able to lift Dan, so we'll need some strong hands when Dan gets home until we are able to purchase the proper lift. We have had some generous donations, so we may already have enough for Dan's computer equipment as well as the lift. Thank you.

I hope this is one of those temporary back issues and not permanent damage -- he's never had back trouble before.

Good news: Dan's surgery is Friday morning!!

YES !!! IT'S A GO.

Dan's phrenic nerves are still intact, AND working so well that all systems are a go to proceed with surgery to implant his Diaphragmatic Pacer System [DPS].

I was at University Hospitals Case Medical Center in the imaging room, with 10 other medical personal for Dan's fluoroscopic test. Some are watching the imaging monitors, others are looking at technical data on a laptop screen. All of us are wearing lead smocks except for Dan, who is lying on the imaging table. They put this small hand held electrical tester looking device which has 2 metal , points sticking out, up to his neck by his right phrenic nerve. BINGO. His diaphragm jumped. I watched it again, this time looking at his abdomen and saw it jump again.
My eyes welled up with tears ... tears of joy, of course.

For those of you have been around Dan or any other ventilator person, and heard them say "watch my tubes", only you can know full well of how restricting, confining, challenging, and irritating those tubes and trach are, let alone the many medical problems that vent patients experience.

Dan will be the 38th person to be fitted with the DPS by Dr. Onders, [inventor of this procedure] and the 49th in North America. More to say why the low numbers for this special life saving, freeing procedure, at a later time.

There is almost a comedy of errors that had gone on during the last 24 hours.

• 3 hour non-stop packing and action from the 3 people that helped get Dan and me on the road. [thanks Mom & Dad, Mikey P]
  
• Dealing with construction & bumpy roads. Hour long expressway delays getting around Chicago, & much of downtown Cleveland being under road construction.
  
• Deep Suctioning at a rest stop, as the extra minivan movements shake up his lungs.
  
• Eating in the car takes on new meaning with a disabled person.
  
• Vent alarms going off while you are driving.
  
• Being booked at a downtown hotel with almost too small of an elevator, and in a "handicap" room that required you climb 4 steps. Hotel #2 was a bit better.
• Trying to care for Dan out of the usual environment of home.
  

Thankfully nurse Dan was able to accompany us on this trip.

Friday, 8 AM is Dan's actual implant surgery. "Non-evasive" as they say, "just like getting your gall bladder out". He will be under general anesthesia about 90 minutes and will stay overnight in ICU. This hospital, like most in the USA, deals with vent patients in their ICU units.

Many times today we have heard that Dan has the highest, most severe, of spinal cord injuries. Once again we are grateful that God spared his life.

We will be released Saturday morning, and drive back home.

Dan, Deb, and I will return to Cleveland on August 31 when the DPS will be turned on and activated for the first time.

Thanks for your prayers today, and that you did checkinondan.

Help for Dan

Dan has been a bit quiet for a few days, and we were able to have a good talk (and a cry) last night about him being "stuck" with nothing to do but sit in his manual wheel chair [insurance delays on the power one] and watch TV. So, we have to come to you again to see if you can help us. I told a friend at school today that I was tired of having to ask people for things, and of course, she encouraged me to put it out to you.

Dan could use some equipment. These are things he used at RIC and was getting quite good at using the computer. This is expensive equipment, and it frustrates me terribly that such prices can be charged. Here goes:

Jouse 2 The lowest price we've seen is $1,495. :( This is a computer mouse that Dan controls with his mouth & tongue.

Dragon Naturally Speaking -- a voice recognition program for the computer. Dan would prefer the Professional version which is $900, but can use the limited Preferred edition. $200.

Any laptop computer with a Window Vista OP SYS, as it works better with the above equipment.

I almost forgot -- a Maxi brand Electronic lift. The Hoyer hydrolic lift that the insurance company sent does not fit nor work for Dan, so000 Bill is lifting him 4-6 times every day, and his back is not doing well. (He visited the chiropractor today and had a special electronic treatment.) The lift is quite expensive, but maybe some of you eBay and internet shoppers know where to look.

You can email us at the email address located at the right of this blog if you have any ideas of how to help us acquire these items. With keeping up with Dan's daily care, we don't have the time or energy to think about a fund raiser.

There are other pretty amazing environment control devices (TV, computer, light and door, controls, etc.) out there that we will look into at the new house, (or wherever that may be!!) A friend has volunteered to help implement some things for Dan now. So, with this help and the meals we're receiving, we are thankful, and it makes it so hard to ask for more "stuff."

Thank you once again for letting us be vulnerable. You provided for our needs while at NMH & RIC i.e. meals, parking, gasoline, tolls, the few hotel rooms we used, 2 condo's, as well as repairs to our house.

Now, for some cutting edge medical news:

On Tuesday, Dan and Bill (and nurse Dan) will travel to University Hospitals Case Medical Center in Cleveland, OH. On Wednesday, Dan's phrenic nerves will be tested. If they are intact (and the Dr. thinks they probably are because of his high C1& C2 injury level), Dan will be implanted on Friday with a diaphragm pacer. This is a device that will enable him to breathe without the vent [and 8 devices that are plugged in to keep him alive].

We will share details with you soon as possible, but for now, would you pray for a safe journey, peace of heart, and 2 working intact phrenic nerves.

click on >> Diaphragmatic Pacer System [DPS]

5th Month Recap

If you are new to our family, here are a few short updates of our "new life".
1st month recap 2nd month recap 3rd month recap 4th month recap


Dan seems to be doing well for the most part.
What a difference from 5 months ago. Exactly how his entire life has changed is very much on the forefront of his mind. He enjoys talking about the past, especially with his college buds, but the future can be difficult to talk about at times. Dan knows he want to finish college at Cedarville University. WHEN is the big question.

Physically he is eating almost anything we set before him, enjoys talking with the care nurses, really gets animated when friends visit, love watching the CUBS or ESPN, and is generally in a good disposition most of the time.

His only problem areas are: his in and out of bed transfers to his chair [only dad is able to do these - and not too well at times], he has to say "Watch the tubes," as bumping them causes pain to his trach; not being able to move independently around the house; not having any "wheels" to get out around town; setting off his vent alarm when he snoozes; his spasms which can set off his whole body from just touching his arm; the occasional light-headed feeling; being bored with nothing to do or places to go; not being able to use a computer on his own as he did at RIC. [We are trying to find a few handicap control devices for the computer AND a laptop for him.]

We hope to post information regarding Dan's up coming Diaphragmatic Pacer System [DPS] testing and surgery, which is scheduled for next week. The above link has great information about this newer "breathing" procedure.

Life literally changes for us every 15 minutes.

The care of our son Dan is still in fast gear, and there is a new phone call or subject being addressed almost every 15 minutes of our day. [Silly of us to think it would slow down.] It starts about 9am goes like this: what do you want to wear today? do you need deep suctioning?, "don't bump my tubes" business call, insurance coverage concerns and phone calls, "is anyone visiting today?", real estate call and selling home issues, "what, no nurse today"??, when can you folks see this van we have for sale for $$$, "what time do the CUBS play today?", i have another ranch house to look at, business call, "whats for dinner" [yikes, it's 6 pm already], what meds is he still getting? GO CUBS, when can we get the PACE bus to approve us and stop here, "can u fix my arms - they're sliding down again" [when do we get the power chair?], Mr K. can you fax us this authorization form? what are the costs of new construction vs another total handicap makeover of existing? when is the lift to get Dan in and out of bed being delivered? future medical needs, business call, phone call on how to get to our home, "I'm ready for bed", don't forget to pick up milk and Kleenex at the store on your way home, and on and on it goes till about 11 pm each night. There is also getting up once or twice overnight, if Dan clicks or we hear any noises on his room monitor.


Please forgive our lack of communication or replies, to your email or phone calls [you'd better call Bill back when he says "I'll call you back in 5 minutes" LOL], we are just swamped or too worn out at times or busy with Dan's care. I'm sure it's just an organization thing, but that's just where we are right now.

Thanks for all of your efforts to reach out to us during our time of great need.

Psalm 6 (New Life Version)

2 Be kind to me, O Lord, for I am weak. O Lord, heal me for my bones are shaken.
3 My soul is in great suffering. But You, O Lord, how long?
4 Return, O Lord. Set my soul free. Save me because of Your loving-kindness.
5 No one remembers You when he is dead. Who gives You praise from the grave?
6 I am tired of crying inside myself. All night long my pillow is wet with tears. I flood my bed with them.
7 My eye has grown weak with sorrow. It has grown old because of all who hate me.
8 Go away from me, all you who sin. For the Lord has heard the sound of my crying.
9 The Lord has heard my cry for help. The Lord receives my prayer.

1 week down ...

and Dan is doing great.

Well, it has been 1 week as of Monday, that we have been home. Dan is glad that he did not have to visit the hospital ER, or have the paramedics called. It has helped that we have had 2 very qualified nurses helping us out for a few days. [One guy who worked at RIC on the spinal cord floor for 13 years.]

Isn't God good?

We are still asking for help, and training these next few weeks, as the nursing help will be cut in a few weeks.

Friday we borrowed a handicap van from friend John and went to look at vans. Dan wanted to check out headroom, leg room and smoothness of ride. Any one got $55k for a '07 Honda Odyssey - VMI conversion van? [LOL - that's okay, well find something more affordable.] Minivans have the highest headroom when the floor is dropped 10", with direct from the ground easy access, AND the front passenger seat can be removed, so Dan could ride "shotgun" when he takes the van back to CU. (someone else would be driving of course :)

We also visited a guy who is the 4th recipient of a diaphragm pacer for breathing. More on this procedure later this week. It's very exciting.

On Sunday, Dan had 13 CU classmates that stopped in for lunch and a visit . They were involved in an SGA event in the area, lead by Dan's OPE brother - Jeff Beste. Dan was at the top of his game with non-stop communication and fellowship with his friends. There is no better therapy for him than when he "hangs out" with his peers. There is no better therapy for us than to see Dan in his old talkative and smiling frame of mind.

So thank you ladies and gents [sorry, forgot most your names already] for taking the time, going out of your way, and for providing lunch from Portillo's for us Knudsen's ... AND your prayers.

Good times!

[In the area? Just call and drop by for a visit. We're here!]

NEEDS NEEDS NEEDS NEEDS

Well, Dan has survived 2 days at home with his parents as his only caregivers
... and HE STILL LIKES US! LOL

His appetite is improved, [which was a given], thinks he wants less sleep and pain meds, likes the better selection of cable channels, but especially the dropping in by anyone who is passing by. "There's no place like home!"

I've lost track of how many times he has been transferred from bed to chair and back, but my back is feeling it. [note to self: get to the gym and visit the chiropractor] We are supposed to get a hydraulics lift any day. His bed is a wee bit too short for his 6'1 frame, and we are working through a few other equipment issues. We could not hear his vent alarm when he was in his room, even with all doors open, so for the next few days we have moved his bed to the family room, which is also next to our bedroom. We are working on a house alarm for his "nurse call button" IE baby monitor of sorts.

Needs #1 ~ People willing to help out on a weekly or monthly rotation basis with Dan's daily care; from 30 minutes to a few hours.

His physical care and needs are overwhelming at times, and may I say, labor intensive. There is no nursing care provided with the insurance plan we have, and both of us have jobs to keep up with. It can be anything from helping to get him ready in the mornings, exercising his arms and legs, bringing food and/or feeding him at lunchtime, reading to him, watching him for a few hours, helping with occasional showers, helping with his bedtime time routine. We need your help to be a relief sitter. email> checkinondan@gmail.com

Needs #2 ~ Dan needs a handicap customized mini van. A "dropped floor" model is preferred for his height, and we are not sure if he needs a raised roof. Doors and ramp [not a lift] can be manual. AC and heat is a given. We have found a few used ones with 100k miles for around $20K, but most that will accommodate his tall height run in the $26k- $30k range. We are planning a medical visit to Cleveland in 2 weeks [more on that later] and would rather not have to waste money renting one. Maybe you know of someone who does not need theirs anymore, or wants to trade up. All of these costs seem pretty high to us, considering that most of our vehicles have been purchased at auto auctions, have 100k+ miles on them, and range between 4 and 14 years old.
email your findings to: checkinondan@gmail.com
donations - see "How To Help" on the right of blog page.


Needs #3 ~ Meals for us are being set up by Sarah Schmitz, wife of Drew Schmitz: Harvest Bible Chapel ~ Elgin Family Director . If you want to help out, email Sarah at: aschmitz@harvestbible.org

Needs #4 ~ A Lot AND a rental house, condo or apt. Oops, did we forget to mention that we had a solid contract on our house within 10 days of listing it? [Sorry, too much going on here.] We can only view the quick sale as a God thing. Thanks to God, your prayers and Jay, our real estate agent.

We could use the lot immediately as it will take 5-6 months to build. We have a general contractor aka Papito, but need to purchase an inexpensive lot. Is there a vacant lot in your neighborhood that is OK for building? Any builders out there wanting to unload or free- up inventory? The target search area is: east of Rt 47, south of I-90, west of the Fox River, and north of Rt. 38. Towns would include Elgin, Geneva, Gilberts, LaFox, Lily Lake, Pingree Grove, South Elgin, St. Charles, Wasco.

We also need a place to rent by Oct 1st. - apartment, house, townhouse or condo on 1 level or at least a bedroom and full bath on the first floor.

That's ALL that is going on in the Knudsen's lives.
Thanks for your checkinondan support and prayers.

H O M E !

WE ARE FINALLY HOME.

We have known for a number of weeks that we would be home on August 2nd which turned into the 3rd and then delayed again till the 6th - today.

Dan has had a week of good-byes, and "best of lucks" from the 30+ doctors, nurses, PCT's, therapists and hospital staff that have cared for him these past 4 months.

We were met at home by a care technician from his ventilator supply company. Obviously they have to make sure that there is a smooth transition from the RIC to home.

Gone are:

• noises of other ventilators on the floor, setting off the entire floor alarm system
• crying babies [who always seems to be at our end of the floor]
• the ability to have ANY type of food delivered to your door
• endless knocks on the door by his care givers and therapists
  
• limited cable TV - that did not carry some CUBS games
• gorgeous views of Lake Michigan
• having to ask permission to leave the floor or building
• morning walks down Michigan Ave including the Jamba Juice stop

Welcome are:

• home cooked food
  
• living in ONE place instead of 3 - HOME
  
• being close to family and friends

We will be posting a needs list starting tomorrow. Big needs items are a lot to build a handicap accessible house on, handicap mini van, skilled and unskilled help with Dan's home care, and meals. (Deb starts teaching in 9 days, and Bill's cooking skills are limited to the microwave :)

Thanks for your continued thoughts and prayers.

Aunt Mary Kay - first visitor at home.

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 !