Day Two at Green Springs

Jon had a chance to meet with more of the staff today. The occupational therapist stopped by to assess Jon’s physical condition and was generally pleased with his arm and shoulder movements. She looked at the exercises he was doing at Parkview and was pleased with how everyone was doing them on their own with Jon, especially Carol and Joe. We were again impressed with their matter of fact approach to what Jon will learn to do and what his goals are for the stay. Getting him up and used to sitting in a wheelchair will be a big step as that allows him to go out of his room and “widen his world view.” We were impressed with Jon’s inventiveness in devising a method of using his finger with the oxygen measuring device to scratch his nose and chin (I believe the technical name for it is a pulse oximeter but not the kind that looks like a mini-clothespin.) Sometimes he has trouble making it to the desired spot but his reach is improving a lot. In fact, it seems his left arm has more range of motion. Maybe they ought to switch hands for measuring the amount of oxygen in his blood!

Carol was busy trying to post some of the many inspirational cards she has printed and laminated to put on the wall. Unfortunately, two sided tape isn’t as strong as she thought it would be and will have to go to the kind of “putty” teachers use in their rooms to put student’s work on the walls.

Jon has a way of putting family to work when they come to visit. Yesterday his Dad was working on messaging his hands and today I was scratching his head--his hair hasn’t been washed in over 5 weeks and I can only imagine what it feels like; Carol and Barb were doing leg exercises with him and he asked Carol’s friend, Dave, to message his arm...kinda looked like he was at an exclusive spa!

We got the TV set up so he can watch TV or listen to music. They had just moved him to his other side; they are changing his position every 2 hours as he already has a small bedsore....and we left him to have a quiet time to himself.

A Monumental Day

Jon could hardly wait for the move to begin. Poor guy thought that getting out of the hospital meant he could get all his hardware off. He was so disappointed when he was told all that "stuff" had to stay on. Barb and Dad got there as they were doing the respiration treatment. As a tube was being placed down the trach he was "talking" to Barb and all of a sudden she could actually hear his voice.

The EMTs got there around 11 and he was finally loaded and on the road about 11:45. His Dad got to ride in the front of the ambulance and Barb followed behind in his car. They had to stop once for suctioning and another time to calm Jon and cool him down. He was overly warm and panicky due to the length of the ride.

He continued to be extra warm once in his new room and was practically stripped. I noticed that the thermostat was set at 77 and felt a little warm myself. A little unusual for hospitals!

We met all the principals of the staff--case manager, admissions gal, respiratory gal, nurses and the doctor in a constant flow of paperwork and duties. Jon’s in insolation for 72 hours to make sure he has not brought any new germs to the building which only means you have to wear a gown and gloves while in the room. By Monday they might have him up and out of the room. He will be learning to dress himself--I want to see that--no working fingers and one big halo! It appears that his days will be full of occupational therapy as well as respiratory therapy. The projected line of progression is talking trach, no trach and eating real food instead of a food through a tube. Barb’s carrot dangling is promising him that when he can eat, it will be apple pie, his favorite!

St. Francis is located in a wooded setting with a small lake and at least 6 white ducks. His room has a nice large window, a desk and cupboard, a TV, and a bathroom. There is a large room that he can go to with visitors or just sit and enjoy the view.

We left him around six as he was exhausted and ready for a “long winter’s nap.”

He's on his way!

Barb called at about 11:45 to say that Jon was loaded in the ambulance but they hadn't started out the drive yet but I think I can safely say that

"Jon has left the building!"

Long Awaited Move has been Scheduled!

After much searching Parkview Hospital and I have settled on a new place for Jon. St. Francis Health Care Centre is a Long Term Acute Care Hospital (LTCH) in Green Springs, Ohio, just south of Fremont, Ohio. He is scheduled to be moved this Friday. I wanted to check the place out in person so yesterday I made a 280 mile trek from Defiance to Fort Wayne and back and then on to Green Springs. It bills itself as filling the gap between community hospitals and skilled nursing facilities by providing acute care for an extended stay. Their average length of stay is 25 to 30 days. They are accredited by the Joint Commission on Accreditation of Healthcare Organizations and licensed by the State of Ohio.

Our aim is for them to work on the respiratory aspect including swallowing so he can get rid of the trach and back on real food. (One of his buddies called tonight to relay the message that Jon had announced that “he was hungry.”) Once on real food and some muscle tone developed we will be moving him hopefully to Columbus.

Jon will be moved by ambulance and will arrive sometime in the early afternoon. He may not be ready for visitors until Sunday as I imagine the trip will be taxing. Visiting hours are from 10 in the morning until 8:30 at night every day. The room I looked at was huge but was cautioned that they were not all that size. But still they should be more comfortable than what he had in ICU. For more information on St. Francis you can visit: http://www.sfhcc.org/ltach.htm

To get to St. Francis take Rt 6 to Fremont, turn south on Rt 53 just west of Fremont. Go south 4 miles or so, turn left on County road 201, then right turn on county road 53, left on county road 181 about 4 miles to North Broadway and turn right. The hospital is fairly soon and on your right. Go in the entrance toward your right. OR take the 6/53 bypass around Fremont, check for state route 19 and follow it down to Green Springs. 19 is North Broadway, hospital is on your right.

Thanks for all your prayers, this is the first big step for Jon and we’re hoping for good, steady progress.

Have a good Thanksgiving.
Marj and family

A Surprise Visit

I had putzed around the house doing some cleaning most of the day and went to see Jon at the 5:30 visiting hour. I had stopped at the little coffee bar in the lobby and turned around just in time to see Peggy, a niece on the Castanien side, and her husband Jerry, who is also a minister. They had made a 4 hour trek to see Jon and pray with him and were just coming from his room. Since they said he was resting we sat in the lobby area and caught up on the events of the last few months.

The week in review has had its ups and downs. Monday, Tuesday and Wednesday as we remember them were not too bad. Jon’s case manager was delighted to hear that I had finished all the paper work and interviews for the applications for medicaid and Social Security Disability and she was even talking about moving Jon straight to Dodd Hall in Columbus. However, Thursday and today have not gone quite as well. Jon seems to have gone into overtime in the production of phlegm and is having a hard time with it. Just tonight he was coughing quite a bit and complaining even though the nurse and I had a hard time seeing what needed to be suctioned. This was not even 2 hours after his last breathing treatment. He’s not running a fever (yet?) and his nurse reported that his lungs sounded clear.

They have also needed to resort more to morphine and vicodin for Jon’s pain and discomfort.

As noted before we seem to be getting mixed messages about when Jon can be moved but a lot of it depends on how he is doing and for how long. He’s pretty much off the respirator which the doctor didn’t think would be possible; I saw him doing a lot of coughing tonight so he is developing some diaphragm muscles; he’s moving his arms quite a bit and is working on holding and squeezing a soft ball. I think the problem centers around the nasal secretions and the ability to swallow. He dislikes the trach intensely-- as would you or I--and suspect it has something to do with the swallowing problem. For more on a tracheotomy check out: http://www.wikidoc.org/index.php/Tracheotomy

When Jon gets moved you will see it here first...right after the ambulance leaves the hospital!

Quick Update

My apologies for the long delay in posting. Just wanted to clear up a rumor going around. Jon is still at Parkview in Fort Wayne. We had thought he would go to Dodd Hall in Columbus sometime this week but he's not strong enough for the intense 2-3 hour physical therapy he would receive there. We will be sure to post that news but we aren't going to say anything for sure until they pack him in an ambulance and I see them pull out the drive! Until then, please check here for updates.

Feel free to visit this week-end. He's probably overdue for new faces and old familiar ones that aren't immediate family.

Will post later this evening with general news.

Thanks again for all your thoughts, prayers for both Jon and the rest of the family. They are greatly appreciated and keep us going!

“Let’s Get this Show on the Road”

These were the words that sent Angelique and I into chortles as we left the hospital last night. They were the words Jon had said just before we left for the night. He had had a big day. His Aunt Peg and Grandmother were among the visitors and Peg and Carol had massaged his hands and legs and given him quite a physical therapy workout. He was showing off his ability to move his hands in big concentric circles when Angelique and I walked in for the 2:30 visit. Later, when just Angelique and I came for the 5:30 visit he was sitting up in his chair again and wanted his hands, arms, and shoulders massaged. Having never seen him quite so active we could only imagine how sore his arms and shoulders must have felt. He was full of the itches, too. One impossible spot to reach was the center of his chest--with the turtle shell brace that’s impossible. Then he complained of his wrist bands being too tight. Angelique tried to show him she could almost get 3 fingers in between the band and his wrist but he insisted. He asked to have the bands cut off. When she replied, “No, I can’t do that.” he said “Yes, you can!” with that expression of ‘all you have to do is pick up a pair of scissors, silly.’ We laughed and explained that the nurses needed to scan his bands when giving his medicine, etc. but that was definitely not a satisfactory answer. It was shortly after, that he banged-quite literally- his wrist brace on the table and said, “let’s get this show on the road!” referring to a promised and much delayed bed bath. Hence the chuckles when we left his room saying, “The old Jon is back!” and then told the nurse how impatient he was getting.

A new problem has arisen for Jon. He had had so much trouble eating that they decided to give him a barium swallowing test on Friday. He was given a thick liquid containing barium which outlines the esophagus, stomach and intestine. X rays were taken of his throat and stomach while the barium mixture moved through them. Unfortunately, he failed that test so food is still out of the question for a while.

We will definitely need help dealing with the highs and lows of this journey. Today, as we should have guessed, would be a low. Carol has as much trouble, if not more than I, in dealing with Jon’s lows. She has worked so hard with him on her own physical therapy program and has been so proud of how far he has come. She has made a chart of all the things that he may be trying to convey for those people who have trouble reading lips. It is terribly hard for her to get up and get going by 8 or 8:30 to make it to the hospital in time for the 9:30 a.m. visitation and she usually stays until noon, sometimes 2:30, so when Jon is feeling down as he was today she is heartbroken.

He had a nurse today who felt that he just wanted pity and she was pretty forthright in telling him how hard the staff had worked to get him to the point where he is and pretty much indicated to me that she had implied he had a lot of gall to lay there and want to be pitied. (It has been pretty much a daily routine for him to insist that he wanted to go home with mom, or wanted all his equipment off, and even saying he wanted to die--the last statement being new to me because I understood that when the last time he was asked that question point blank he had said “no.”)

So, what we’d like to say to Jon is “The ball is in play, let’s keep it moving!”

Three Long Weeks!

Jon was having a much better day today. He has been so down and depressed the last 3 days we were really getting worried. The hassle of moving upstairs and then having trouble breathing because he wasn’t being aspirated as often which necessitated the move back to the ICU wasn’t so great, either. Yesterday, they had to do another deep cleaning which can be very painful and leads to some extremely hard breathing. It hurts just to watch him -- just imagine the most violent case of hiccups you ever had and that would just be a breeze compared to the trouble he has breathing after these treatments. Today was much better. His breathing had calmed down and he was in a much better mood.

This is day 21 in the hospital and he hasn’t had his hair washed. He was asking today if we would scratch his head. What with the halo and all it is not as easy as it sounds. By the time Carol was finished to his satisfaction he much looked like the scientist Christopher Lloyd played in the movie “Back to the Future.” I was amused the other day to see a shampoo cap on his bedside tray and wondered how in the world they thought it could be used...just standard procedure for housekeeping, I guess. We tried one with Barb when she was in the hospital last January and we weren’t at all impressed.

Jon continues to like lotion applied to his hands while they are exercised and massaged. Carol is sure to include that in her daily visits. She was pleased to notice that he is trying to make a fist when asked. He is also gaining more control of his arms. She makes sure his legs get some movement also. I told her she missed her calling--should have signed up for physical therapy! His aunt Susan dropped in on her way home from Dearborn MI to her home in Dayton, OH and she helped also. My other sister and mother hope to be down tomorrow to see him.

Jon has days when he “talks” a lot. It really helps if the other person in the conversation can read lips! Sometimes we have to ask him to spell the most important word he is trying to convey and then go from there. Those of you who do well at lip reading are most welcome! Well, everyone is welcome; it is just that lip reading is an extra bonus.

We hope tomorrow will be another good day. All of you who are recovering from colds, please come back...he misses you.

Tried and Tired...You Just Move a Little "i"

Maybe it's a little odd or maybe it's just me, but when thinking of what to call this post, it struck me the small difference between these two words. Uncle J is trying (and has tried) to make it on his own, and he is being tried, and he is tired. He is having difficulty breathing because he has so much secretions from his lungs. He had to be moved back to ICU because he will be suctioned more frequently than on the floor he was on last night. He had another deep cleaning this morning and I'm sure they got a lot of gunk (strict medical term) :) out of his lungs. They did another chest X-ray to see if there were any changes, but they were still the same and had not gotten any worse. He continues not to interact much, has no desire to eat, and claims he is just "tired." We are hoping he can pull himself out of it, but it is to be expected at times. Thank you to all those of you who continue to keep yourselves updated via this blog and those who continue to visit. Hopefully something will raise his spirits over the next few days...

Back in ICU

Uncle J had some respiratory problems last night and is back in ICU Room #1103.
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I would share more info, but I don't know it. I just wanted to get the new room # posted ASAP. Thanks!

New Room

Please note that Jon has moved to a different room .
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He is out of ICU now.

Down Day

I think Mom and I were the only visitors Uncle J had today. He was doing OK health wise, off the ventilator and such, but he was having a down day. He wouldn't talk or really look at us much, though Lord knows I tried to get him to! I know we will have these days, but it just plain sucks. On a side note- Greg (Jon's brother) had a seizure last night and is in the hospital for a few days to get some tests done. Not too big a deal as he's had them before, but man, those of you who know our family know that we have sure had a rough year. Over the past year everyone of my Grandma's kids has been in the hospital for one thing or another! I don't know how she does it. Anyway- not too much new news today...L8R!

A Quiet Day

Jon had a quiet day today. He got to sit in his chair. This helps his breathing which was much easier today. In fact, maybe a little too easy. He had long pauses in his breathing which made a little alarm go off and then he would start breathing again...kind of like sleep apnea, they said. He is on antibiotics again for pneumonia and we discovered that when they put the filter in for blood clots they also started giving him a daily shot of Lovenox which is a blood thinner. We are very familiar with this drug since Barbara has been taking it ever since her operation last January. She had the filter also, but it has since been removed.

He is still back on the ventilator. Everyone is resting a little easier with that news, even though it seems to be a step back, since his body doesn’t have to work as hard. This does prevent taking sips of water, or even ice chips, and puts off eating for a while. His heart rate is being kept up with the use of a motion sickness patch on his neck. Don’t ask us how that works!!

We also heard the word “severed” for the first time last night. We understood that the cord was just pinched by the C 6 vertebrae and probably would not regain its original shape or function but with the way science has progressed in this field I had secret hopes that someday some repair could be made. Now they are saying the cord is actually severed there. This puts him in the class of quadriplegic which limits a lot of expectations as his fine motor skills in his hands may not develop like we had hoped. We did learn that most successful rehabilitation happens in the first seven years from the injury. So let’s get those scientists moving!

As always, your prayers, cards, and concern are greatly appreciated.

Today...

Visited the hospital today with: Mom, Joey, Jenny, Grandpa, Barb and Grandma. Uncle J's day was going OK this morning. Still breathing without the ventilator, asking to have his hands rubbed, and generally doing well. Later, I got to visit with him and we "talked"- I talked, he mouthed and I repeated to confirm!- and we had some funny moments. He is having some short term memory problems and doesn't remember the accident. The last thing he remembers is October 23 and being at work. He forgets about the accident, where he is, and his injuries at times. Yesterday he went into bradycardia again and they had to use atropine to bring his heart back up. This makes the 3rd time. He was doing well all throughout the day, but this evening his breathing had gotten a lot more raggedy and his heartbeat was a little faster (the reading on the monitor was all over the place.) Mom called for an update after we had all left and they had put him on the ventilator so that he would not get too tired and would hopefully not have any other problems. Grandma and Barb went to look at a facility in Lima where he may go to become more stable before eventually trying to get into the spinal cord injury rehab program down at OSU. We all take it day by day and hope that each day brings good news. Keep looking here for updates and, as ever, THANK YOU for everything!

66 Hours and Counting!

The good news is that Jon has been off the ventilator 57 hours and counting! The bad news is that he has had several episodes of bradycardia with his heart rate dropping to 30, or even 20, a minute and the preferred rate is 60. Several times they have had to administer atropine to get the heart rate back to normal.


We now know that what we had been referring to as a respiratory infection is really pneumonia. His temperature is still ranging from 99 to 103. Today his arms felt really cool. Since he is mostly at a gentle recline--although enough to have a barrier at the foot of the bed to stop him from slipping down--his lungs get very congested. He was not sitting any today mostly because he had already had a busy day. He had to have another really deep cleaning of the lungs. The doctor and nurse both said they’ve never seen quite as much gunk in a person’s lungs as they did today. When I asked how much of that was due to pneumonia and how much due to his smoking the answer was “both.” (To those smokers out there my motherly advice is a strong “Stop now!”) Not being able to cough due to little, if any muscle control in that area, has not helped the situation any either...the stuff just sits in his lungs, gets sticky and hardens.


They have been introducing him to regular food in addition to what he gets through the stomach tube. The goal is to get his digestive system used to working again. Yesterday for lunch he had small amounts of tomato soup, ice cream and good old Mountain Dew. (Joe was there when they were planning the menu and he mentioned how much Jon liked that drink.) Food creates a new problem-one of constipation, so relieving that was the other part of a difficult morning. Today, they sent applesauce, potatoes and gravy and cooked carrots...we stuck with applesauce--on second thought I’m not so sure that potatoes wouldn’t have been easier; he tried to chew the applesauce. Eating is more difficult due to the fact that he did lose a few front teeth which I hadn’t really noticed before. I’m too short to get a good head on view--now that there is a footstool that we can stand on it’s easier to get a good look at him and to read his lips.


Jon is wearing braces on his hands to keep his fingers from staying in a constant fist. He frequently asks to have them removed and we have been using that time to put on some lotion and message his fingers. Carol asked the physical therapists if there were any exercises we could do with him so that is one way we’ve used to pass the time. He does have the TV on occasionally and Joe has brought in some of his favorite music.


They are trying to find another facility to place Jon. We had really wanted to have him transferred to Dodd Hall in Columbus but he’s not quite up to rigorous physical therapy yet. They have found a place in Lima, Triumph Hospital, which is an intermediate care type of facility. The nursing ratio where he is now is 2 to 1 and at Lima it is supposed to be 4 to 1 which is better than going upstairs at Parkview where it is 6 to 1. With as many times as his heart rate has dropped and the suctioning of the lungs and throat it is probably best that he stay right where he is for the time being. The other drawback is finishing the application for Medicaid since every place insists on having at least a pending application number for financing his stay...can’t blame them there. I’ve had a bad cold and didn’t notice calls on the answering machine--or the cell phone which stayed in the car for about a day and a half!--so I missed the opportunity to take care of that this week.


The search is still on for his keys, one of which is to his storage unit which is where we think his important papers are since we can’t find them anywhere else. I can’t begin to tell you how many times I have asked for information and its been denied because I’m not his wife and he hasn’t put down another person to have access to information or property. Will be getting power of attorney as soon as the doctor says he is competent. If that doesn’t happen soon I’ll have to appeal to a judge, I guess.


Sorry this has been so long and late in coming. Angelique is swamped with work and papers to write for school, I’ve been staying away due to a cold, and Carol is trying to work, keep up with school and see Jon as often as possible.


Thanks again for your prayers and visits. If you are coming down with a cold try to cut back on visits and with the way colds and flu seem to be flourishing it wouldn’t hurt to ask the nurse for a face mask while visiting.

One Small Step to Rehabilitation, One Giant Leap to Life Without A Ventilator!

Woo-hoo! Greg and I went to visit Uncle J tonight and we got some awesome news. Uncle J had been off the ventilator since 12:25 p.m. and we were there at 5:30 p.m. If all goes well, he'll continue through a progression of stages to breathing without any additional means. There may be a few setbacks along the way, but hopefully he'll be able to get right back on track. We visited for a couple hours and Uncle J had us massage and rub his hands quite a few times. They are a little stiff, so we worked with his hands and fingers trying to help him get loosened up and make them feel a little better. He can also have ice chips now, so I gave him some of those. I had trouble a few times trying to decipher the words he was mouthing. How frustrating! I know he'll (and we'll) be so excited when he can talk to us! They sat him up in a chair at about 7:00 p.m. and we left about 7:30 p.m. Mom called for an update at about 10:3o p.m. and he was still doing good on his own. 10 hours of breathing without the ventilator! Thanks for all your thoughts and prayers- we'll keep trying to get updates on here as much as we can.

Yikes!

Greg & I went to see Uncle J for the 5:30 p.m. visitation, but when we got there they were cleaning him and asked us to wait. We were waiting outside his door when we heard the nurse repeatedly calling his name. Then, one of the aides came out and asked us to wait in the lobby until they called us. We did as they said and when we went back in the nurse said that he did fine when they turned him on one side, but when they went to turn him to the other he went into bradycardia (his heartbeat had dropped to the 30's) and he was unresponsive. Usually when he has these he can bring himself back up, but he wasn't this time. They had to do CPR and give him a shot of Atropine. He was then on the ventilator for full support for a little bit, so he could rest. By the time we left he was down to 8 breaths per minute from the ventilator, and I just got a call from my mom that he is back to only getting one breath per minute from the ventilator, doing all the rest himself. It was quite nerve wracking, but these things happen with spinal cord injuries, one of the nurses said sometimes even a wrinkle in a bed can be the cause of something since all the pathways are little messed up! Hopefully tomorrow will be a little less stressful...

1 Hour and 15 Minutes!

Today (which is actually yesterday, since I am writing this post at 1:30 a.m.!), Uncle J made some awesome progress. In the morning he was off the ventilator and breathing completely on his own for 45 minutes. We (Joey, his GF Jenny, and myself) thought this was really good, but we got a little scared when he started having a few "pauses" between heart beats! He gets so tired that he'll do that for a bit after he's back on the ventilator (which he still only needs to give him one breath per minute, doing the rest on his own). Then, when we came back for the afternoon visit, he had been off the ventilator again, this time for 1 hr and 15 minutes! Hopefully this is indicative of how the rest of the breathing trials will go as he builds up resistance and strengthens everything up. His fever of a day or so ago is gone and he was very alert, mouthing words. At times it is hard to decipher, and sometimes I can't, but he always seems to keep his patience with me! He did tell me, "Get me outta here." To which I said we can't yet until you're stronger and he said, "OK."

Thank you to all those who have visited, prayed, and sent happy thoughts his way. Keep 'em coming!