...and a Merry Christmas was Had by All

The week started out rather rough for Jon. Early Monday morning he had a difficult time breathing and after having several attempts to clear his lungs was sent on an emergency run to the hospital at 5:30 a.m. By the time I got there at 8 he had been sent home since he was alert, chipper and in the doctor’s view didn’t have any problem that needed to be dealt with. (They did, however, schedule a CAT scan for Wednesday to see more clearly what was going on in the left lower lobe of his lungs. Everything else is clear and healthy looking.) He’s not fond of therapy in the first place so he was not happy to find that we were insisting on therapy that afternoon.

Tuesday was a relatively calm day. I made it to St. Francis in the afternoon with Carol and I watched his physical and occupational therapy sessions. He has some cognitive problems that are slowly getting better but while he seems to understand what is being told to him it takes several seconds to process that information and then carry out the task. The next day he may need to be told the same information with the same degree of thoroughness as the day before...and again, with the same amount of processing time. When asked his address he usually gives mine since that’s where he’s always had his mail sent and he had been living there for several weeks before the accident. Instead of saying 191 he said 119. After much thought he gave Watson Road. He’s never lived on that road. When I told him he had the right numbers but in the wrong order he thought about it and then put the numbers in order and the street name just popped right out.

He seems to need to have his day follow a certain order and does not do well with changes. If he’s supposed to have a respiratory treatment and the other therapists come to get him for their therapy he is very vocal in his resistance. He doesn’t understand that the staff is very flexible and whoever is available at a certain time has priority over those who haven’t made it to his door yet.

Wednesday it was off to Fremont Memorial Hospital again for the CAT scan of his chest. Getting loaded onto the stretcher and taking the 15 minute ride to the hospital and back again is a big deal and he was quite disappointed to find that it still didn’t get him out of therapy. We told him that with Christmas on Thursday and then only meeting with them on Friday and then the week-end would leave him mighty stiff and a step or two backward without therapy and he finally agreed. He likes the machine that looks rather like bike pedals but work with your hands. His hands have to be strapped to the pedals since he hasn’t developed a grip yet. The machine has an odometer of some sort that shows how much energy has been expended. The next exercise had a similar charting capacity also. I’m hoping he can start competing against his last session’s numbers to get things going faster.

Today, we all packed up our presents and Christmas dinner and made the hour and a half trip to St. Francis for Christmas. Barb took a decorated tree and put it in his room. He was put into his wheel chair and came out to the dining hall to eat with us. Barb had set the tables in a “u” configuration and put him in the middle but when he was finished eating he asked to be moved back several feet. I was afraid he wouldn’t be able to hear everything that was going on but he said that was okay...moving that far back made it easier to see everyone since he can’t move his head from side to side due to the halo. Home cooking and good company makes it easier to eat and while it wasn’t a lot by any means it was the most he has eaten since passing the swallowing test last week. After clearing the table we passed out presents and opened them. Jon got several sets of socks, a yo-yo from me and a giant set of playing cards from his grandmother, a fuzzy throw blanket, a pair of slippers, and a digital photo album. We got several fleeting smiles from him throughout the afternoon and that’s quite an accomplishment!

Before leaving Jon asked if I had had a good Christmas. I said I did and asked how his was. He said, “it was good...I really enjoyed seeing everyone.” And so, despite all the changes in the day’s plans, (and believe me there were way too many to enumerate) it seems we accomplished what we had set out to do. We all hope that you had a Merry Christmas, also.

More Progress, ...and appreciation

Jon had his old trach replaced with a new, smaller one and got permission to have ice chips today. The trach replacement was no fun--I got to watch--but it only hurt a few minutes. He couldn’t get enough of the ice chips though. He was supposed to let them melt in his mouth but he has a touch of his mother in him and he crunches them! So I doled them out 2 at a time :-) I can also attest to the fact that he can burp! He went through the first cup that I gave him so fast that he needed to have his shoulders covered. I’m thinking this is all preparation for the swallowing test on Wednesday.

The respiratory specialist says that his treatments are less intense and he doesn’t need much suctioning afterward. Another sign of progress. When talking with Carol on the phone on the way home she mentioned that he had a chest x-ray today but no one mentioned it at the hospital so I'm not sure why or what the results were.

Everyone else has gotten him to smile about something and today was finally my turn. I was relaying the children’s Christmas pageant at church. It was entitled the “Mixed Up
Christmas Story” narrated by an absent minded professor--I hope I’m recalling this correctly. When the narrator got a fact wrong, a child “in the audience” called out to correct him. There were such factual errors such as a hotel/motel sign outside the stable; elves came to see what was going on and when the correction was made the stagehands came out and replaced their caps with shepherd crooks; supposedly Mary had a baby girl and when corrected the stagehands came and traded the girl doll for a boy doll; the sky was lit by a UFO but was corrected by turning the board over to reveal a large yellow star. What brought the chuckle from Jon was when I mentioned that instead of 3 wise men there were 3 tourists who came to take pictures and they marched down the center aisle pretending to take pictures of the church and the congregation! There were more mistakes but you’ve got the picture..no pun intended.

Generally speaking, he seemed in a better mood and more like the old Jon. He did ask a lot for head scratchings and tolerated the leg exercises and the application of lotion on his feet and hands. When he got his voice back a few days ago I had suggested that he not forget his “please” and “thank you’s” -- he might get better service. When I left tonight he upped the ante and told me how much he appreciated what I did for him!

WOW! He can talk--oops, my bad, he commands!

The staff inserted a slightly different size trach yesterday and since he seemed to tolerate it better than the one previously tried they put the passy muir valve on it today and we could hear his voice. "Scratch my head--down lower--scratch harder--ouch! not that hard--over to the right--no, down to the left, etc." I finally reminded him that he might get farther with at least an occasional 'please' and 'thank you.'

Angelique has been so wanting to carry on a regular conversation with her Uncle Jon that Carol called her and without saying who she was putting on the line to talk with her, she put the phone to Jon's ear. They talked a bit and then we heard Jon say, "You don't know who this is, do you?" About that time Carol took the phone back and told her it was her Uncle Jon...Angelique's reply?--Jon Castanien???? (like she has more than one Uncle Jon.) So then they had to talk some more...you can read her reaction below.

At one point in the afternoon Carol and I set about exercising his legs to keep his muscles from atrophying. He looked down and said, "What are you girls, doing?" We said we were exercising his legs to which he informed us that wasn't what they were doing in physical therapy. We just nonchalantly explained that these were the exercises Parkview had suggested and we had been doing them almost everyday now for about 5 weeks and kept right on going.

They are now administering some lung medication in what they refer to as an easy pack. Jon hates it! It must interfere with his breathing drastically and yesterday he was physically fighting it, pushing away the therapist's hands, etc. I went to take his hand away and declared him almost ready to do some arm wrestling! He's developing some muscle in the left arm...wish his right arm was coming along as well. One of his arguments against the medication was that 'he knew what was best for him!' They'll have to change the name of that procedure--'easy pack' is a misnomer in his mind.
Must say though that it went better today--of course, a male therapist might have something to do with it, too.

I know it is a long drive but now that he is communicating aloud instead of in whispers it would be worth your while to make the trip. He misses you!

Totally Freakin' Awesome!

As I was leaving work for lunch today, my cell phone rang. Caller ID showed it was my mom's cell phone and I answered. I was greeted by a (slightly) unrecognizable male voice who asked me what I was doing. I said I was going to lunch and the caller said where are you going for lunch. I said I had no idea. The caller kept talking to me, and I may or may not have said, "Who the he!! is this?" "You don't know who this is?", was the reply. Uh, no. I tried to guess, but I couldn't think and I had no idea where the heck my mom was, so I got an "OK" and the next thing I hear is my mom asking me, "You don't know who that was?" I said no and she said, "UNCLE JON! Do you want to talk to him again?" "Are you kidding me? YEAH!" I told him I was sorry I was a jacka** and talked to him for a few minutes. I said that his voice sounded different, but he thought it sounded kind of the same. Of course, now that I knew who I was talking to, I could pick out certain characteristics of his voice.

I know no information medically about his talking trach, I only know that that was the most awesome, unexpected thing to happen to me in a long time. I can't wait to see Uncle J and have a (out loud!) conversation with him. Yay!

No $#@!, Dick Tracy!

Today, Grandma and I went to visit Uncle J. This was my first time to see him at his new digs and since Thanksgiving. He was not in the greatest of spirits and at one point I told him he was pretty crabby, to which he replied, "Wouldn't you be?" I told him I probably would but that to get better he needed to get a more positive attitude and he had to really try to do the rehab exercises, to which I was greeted with, "No $#@!, Dick Tracy!" Grandma had never heard this expression and added it to the list of our goofy expressions, along with "My bad." I tried to ignore his sour mood and told him some of my funny moving stories, which got a few half smiles. At one point Aunt Barb called and I was trying to ask him a question, he would look at me, but make absolutely no move to speak. I asked if he was ignoring me and I still got nothing. Then he wanted me to scratch his chin. I said, you want me to scratch you chin and you are ignoring me! He said what did I want and I asked him again. He begrudgingly answered. I think at this point there is just FRUSTRATION all the way around. Though it's understandable that he's not Mr. Sunshine, please pray for a more positive attitude to help him get through this. Thanks again!

Also...

Please note the zip code for Jon's current hospital has been changed ----------------------->

Barb and Carol (Jon's sisters) are going to be added as posters to the site, but I have been the one in charge of that and haven't had the time. I have sent invitations to their e-mail and will wait for a response.

I have not been able to see Uncle J much lately (or do anything really!) because of school, work, and moving, so I haven't been able to do any postings lately.

Thank you for your continued support and checking in through the blog!

P.S. Aunt Eleanor- I did get your phone message and really meant to call you! I'm glad that you like the blog and keep updated. Love, Angelique

Overdue Update

My apologies for not keeping up with the posts. Barb had loaned Carol her computer so she could chime in once in a while and she’s only been there once this week. I have been there every day with the exception of Thursday but by the time I get back home I’m beat. Received a rather comprehensive report yesterday and unfortunately did not have my infamous notepad with me to take notes--didn’t realize how extensive they would be either. As of yesterday Jon has a passy muir speaking valve that can be put on his trach. This valve should allow Jon to talk again making communication so much easier. It seemed uncomfortable so he only had it in for a short time. (OSU has a short pdf. file on the Passy Muir valve but I don’t know how to incorporate it here.) It should help with the amount of secretions he has and improve his swallowing capability.


He has another “bug” or maybe a reoccurrence of an old one. Was running a fever on Tuesday which kept him down. My visitations have been late in the afternoon and he’s rather tired then. Loooooves to have his head scratched...harder comes through loud and clear even when just mouthed! On one visit he actually did have on a shirt I had brought. I should have know better than to bring one of his own button down shirts. He needed one much larger, but then I always wondered how they were going to get arms in and out of the sleeves. That was the only day--but then 2 days later I took all the shirts home, what the heck! Actually the nurses don’t seem to be in agreement. One will suggest dress shirt styles, others large V-neck tee shirts and one, bless her soul, even said she didn’t see how they expected to put any type of shirt on him! He has worn the jersey knit pants though. We joked about how he never in “real life” would have worn them.


He has been sitting in a wheel chair especially adapted for halos for 2 to 4 hours at a time. I believe one day it approached 6. He’s been out of his room several times. They may park him near the nurses station which would ruin my sanity. The patient call buttons sound a lot like the telephone ringing and “have to be loud so the nurses can hear them wherever they are.” Which is fine if it were possible for them to reach the patients a little speedier. A constant ringing sends me into a straight jacket condition and guessing from Jon’s attitude that day it doesn’t do much for him either.


They are using some hoisting device to get him out of the bed and when he masters sitting and balancing himself on the side of the bed they will start using a transfer board which is supposed to allow him to do more of the work(?)


Today, he has had a lot of company. Barb and her Dad were up to see him and their Aunts Ginny and Jeanne were there as well as their Uncle Dick. I’m sure his time was well occupied. His Dad said its time for another haircut, oh joy, oh joy. Trying to do a decent job working around the bars of a halo is really some trick. A shampoo of sorts is in order also.


Will try to get reports out in a more timely fashion in the coming weeks.