Saturday, November 28, 2015
Visiting with family will be from 11:30 am - 1:00 pm with the Service starting at 1:00.
If you can not make it, please leave a memory on his blog. If you have "paid it forward", feel free to leave your story on the blog as well. To view peoples comments, please click on "Comment" at the the end of post. It will not show on the page itself.
The family thanks you for your friendship with Jon. Your thoughts, prayers and comments have meant a lot to us. Family and friends alike miss him very much.
Sunday, November 22, 2015
Friday, February 7, 2014
We were hesitant about a general anesthetic but the docs were very positive about it and foresaw no problems and we are thankful that they were right. After surgery he was sent to ICU where he could be closely monitored in case something went wrong….especially important since he can't feel anything below the mid-chest line.
Jon was a changed man in ICU! His eyes were bright again, he appreciated jokes and he wanted to celebrate with a steak dinner from Applebees. We had to explain to him how he would have to be careful of his fat intake for a while and especially the first two weeks after surgery so he was convinced it would be better to wait a while to celebrate.
He will be in ICU (Intensive Care Unit) overnight and into the day tomorrow. Not too sure how long he will stay in the hospital but it is comforting to see that they are taking extra measures to be sure he is okay. Thanks for all your prayers and concerns.
Monday, February 3, 2014
There are some other factors that present problems for the surgeon. She would like to use the smallest incision possible. The feeding tube going into his stomach may block the view which would mean a full incision. Being a spinal cord injury patient ups the risk factor as does the fact that he already has so many blood clots.
We discussed anesthesia somewhat and the need for general anesthesia. We asked about a spinal block which she thought was a possibility but Jon wants to be completely unaware of what is going on. The pulmonologist at Heartland says that if Jon has a trach put in during surgery she won't recommend ever taking it out which adds another infection risk down the road. The talk about a spinal block also led to a discussion on having a neurologist do a pre-op assessment to determine pain levels so we need to double check the location of the break in his spine.
In the meantime, they have put him on liquids which includes jello and his tube feedings are being restarted. The colon seems to be operating normally. If I have not already mentioned it in a previous post he does not have a mega-colon which is a relief.
One of the gals that used to work at Heartland is now connected with St. Luke's and she popped in for a few minutes while we were there. It sounded like she might stop by again after work. It's good that he can see a familiar face once in a while. We are due for still another bout with snow starting tomorrow afternoon so it may be toward the end of the week before we get back up there.
The hospital's address is:
St. Luke’s Hospital
5901 Monclova Rd., Maumee, OH, 43537-1899
Jon is in room 378 Phone number for the hospital is 419 897 9386. He can't answer the phone in his room.
That's it for now…keep up the prayers and thanks for tuning in.
Sunday, February 2, 2014
Saturday, February 1, 2014
Wednesday, January 29, 2014
Sunday, May 27, 2012
Friday, July 29, 2011
Monday, July 25, 2011
Saturday, July 9, 2011
Friday, June 24, 2011
Wednesday, June 22, 2011
Sunday, June 19, 2011
Thursday, June 16, 2011
Carol and I went to the patient care meeting and asked many questions. But many of them refered to a behavior management program which can only be administered through the psychiatrist and Jon refuses to see him--Jon still does not believe he has any problems--at least not ones that need work on! I get the feeling they still think Jon is getting enough fluids even though the color of the urine would indicate a lack thereof. They will try to give him a larger glass of water when they give him his medications. The chair did safely arrive and is stored. They emphasized he will have to get back in bed several times a day.
We went from there to St V’s to see Jon. He was being exercised by the occupational therapist and she put his arms through a range of motion workout. She did a little work on his feet and legs.
The cute nurse asked if he would like to try eating some food. He agreed to give it a try since he didn’t want to spend the rest of his life going around town with a food tube hanging on his chair... actually what he said was he’d like to someday be able to eat another Big Mac. She explained that starting food was a process of moving through the 5 stages of food types: clear liquid, full liquid, soft, medium(?) and anything he wants. That was also influential! He ate about a1/4 of the jello, some of the soup, 3/4 of the Ensure Enlive and a few spoonfuls of the cherry ice. If there are no problems he goes to the next stage. Of course he had the nurse feed him (there was no adaptive silverware so someone had to do it.)
His vital signs are much better today. The staff were more comfortable with his blood pressure readings which were up. That 51 figure referred to yesterday stands for the “mean arterial pressure” which needs to be 60 or above. When we arrived it was 64 and when we left several hours later it was 75. The blood pressure on our arrival was 117/43. His urine is much clearer but still reddish. He was more alert and didn’t fall asleep at all. As long as a person kept the conversation going Jon stayed in it. He had a fever today of 100.6 when we arrived but when we left it had fallen to 98.7. Still is a little high for him since normal is somewhere in the 97 range. The white blood cell counts have fallen considerably, from 50 to 20 and from 26,100 to 11,400.
He did not have a central line inserted because his blood pressure started to rise and stabilized last night shortly after we left. Yeah! His IVs have been changed to mispenem cilastatin and norespinephrenine bitartrate. Earlier today he was taken off levothid and put on tobramycin. Then later tonight they started him on primaxim--don’t know if that replaced any one, or all the others, or not. This infection is still a form of gram negative bacteria but is called proteus miribilis.
When we called for a 9 o’clock briefing we found that he had been transferred out of the ICU to the fourth floor, room 404, another step forward. Hope they keep him long enough to have this one thoroughly licked.
The nursing home in Napoleon has backed down somewhat and said there were other issues other than the bedsores and would check with the administrators again. I thought yesterday they said it was stabilizing his risk of infection but there might be something else involved.
Thanks for checking in, hope your summer is off to a good start. We’re still planning on celebrating Josh and Angelique’s birthdays, Father’s day for Bill, Joe, Marty and David on Sunday.
How fast things can change! Thursday I was so pleased with how things were going. Saturday my Mother and and sister, Peg, came to visit Jon. He was sleeping when they got there and seemed sleepy after about an hour so they said their goodbyes.
Sunday, Barb and her dad and Greg and I went up to visit. I noticed his urine was getting dark again and even had a few “floaters” in it. He assured me he was getting enough fluids and that the staff thought so, too--between the liquids with meds, his drinks at mealtime and whatever drinks he either got from the Camelbak or he asked them for.
Monday, I had a meeting in Perrysburg, about 20 minutes away from the Liberty Nursing Center so I decided to make a quick run his way to see how things were going. Angelique and Jeff had stopped by on their way home from a trip to New York. I was mortified at the color and the amount of cloudiness (4 inches or so) in the tube. I just lifted the foley bag to show it to him and he snapped at me-- so I left. Before leaving the building I asked one of the staff to check on him after his company left and see how he was doing. I reminded her that the infection he had never really goes away it just needs to be under control and he had gone very quickly from being incoherent to just plain out of it!
I really expected to receive a call during the night so I didn’t sleep well Monday night. I did call though in the morning to see how he was and if they were keeping track of his output. While the gal was searching for that info I explained why I was concerned and when I got to the 4 condensed inches of cloudiness she gasped. She said that they could probably use extra fluid when they flushed the feeding tube to get more liquids in him and I agreed it would be a good idea. Ten minutes later she called and said that St. V’s had discontinued the cranberry capsules and she could start those up again and I thought that would be a good idea, too.
Today, actually yesterday but to be exact Wednesday, Carol and I stopped by for a quick visit. As I was parking in their lot I got a call from Liberty saying he had gone to the hospital for an appointment with his wound care doctor and then commented about how his stomach had gotten bigger. They took his blood pressure and it was low enough they agreed with him that he needed to go to the emergency room, again!
So, off we went to St.V’s. When we got there they had already taken 5 vials of blood, 2 samples of urine (very red), then he had x-rays of his stomach and chest followed by a CAT scan of his tummy. He had 2 IVs put in; one for 2 antibiotics (cipro and cefetime) and another for something to help with his blood pressure. At that time it was pretty obvious he was going to be admitted and probably to ICU.
An ICU doc explained that while he was admitted to the ICU he would not be under the care of that staff since he was not in quite the critical condition he was in 2 weeks ago. Instead he would be under the care of the infectious disease staff. A while later when we were allowed to see him the nurse sounded like he was indeed back under the critical care staff’s care since his blood pressure had not responded like they anticipated. His infection is systemic or septis meaning it is through all his body. He would need another central IV line like he had last time and probably in the neck again...something that Jon was very unhappy about. I imagine that any movement of the head irritates the area around it. Last week I had kidded him saying that the marks left on his neck made it look like a very thirsty vampire had attacked him!
Just before we left the results of the blood test had come back. His white blood count is 26000--two weeks ago when he was there it was 18000! The blood pressure numbers are 82/37. However, there is another number that goes with that that neither Carol nor I understood and that was 51. While we were there it dropped to 48 and what they were aiming for was to get it up above 60! That’s what brought on the central line--the medicine will be levophed.
That’s about it for now--time to hit the pillow. The chair has made its way to Toledo, the patient care meeting is still on for tomorrow at 1 and the place in Napoleon says they will take him once he gets into a stable condition. Neither Napoleon or Defiance hospitals have an intensive care unit so he would have to be taken to Toledo anyway if another problem developed.
Thursday, June 9, 2011
Jon was perhaps in the best spirits I've seen in ages. His face looks good, his voice is strong and he's been doing some exercise on his own. Since he has come back from the hospital he could have some therapy start up again and they put some weights on his wrists while doing some exercises. He has obviously been drinking quite a bit of water which is great--even if he slacks off a bit.
Have again asked for a patient conference, this time with the social worker who was on vacation when I asked the assistant director of nursing about setting one up. I'd like to see him on some combination of food and the feeding tube if we can't go back to food and ensure. One of the reasons he stopped eating breakfast was he'd gained some weight and figured that could be a solution.
Am going up today...will keep you posted.
Monday, June 6, 2011
Carol and I are going to see him tomorrow so we'll have a better up-date.
Sunday, June 5, 2011
We had a short talk about his stay. He couldn't remember his/our first night there--but that was to be expected. At first, he wasn't quite sure he remembered the second time Carol was there and needed to be reminded that Angelique was with me yesterday. He is hoping he can leave there tomorrow-in fact, he is sure he is but he doesn't always get his information straight.
That's about it..he looks like Jon, talks like Jon and can occasionally be cranky like all of us! Wish him luck on leaving soon!
He was delighted to see us. Angelique is much better with lip reading than I but when he has stuff in his mouth it makes it very difficult--even for her. When w asked him to spell the words we weren't getting the nurse produced a flyer that has the alphabet. He can point to the letters to spell the words. Usually it just takes a few letters at the beginning of a word. He got a "k" and an "i". Angelique kiddingly said "the next letter better not be an "l" and he shook his head violently. I guessed "kiss" and he nodded just as vigorously for a yes. So we both gave him a big smooch.
His urine looks quite normal now-just a little dark. The nurse said occasionally it still has some clouds but on the whole is much better. She also said that part of the explanation for his unresponsive state when we first saw him Thursday night was due to the urine backing up in his system. Add to that the drainage of so much urine at one time is hard on the body also. So I guess he had had kind of a double whammy to the system. Kidney function is now normal.
They have resumed the tube feedings and he is tolerating them well. The other new thing we noticed were the "mini air bags" (not a scientific name at all but I can't remember what they are called!") They are long and fit on his calf and have the air pressure fluctuating to prevent blood clots. In all this time that he's been confined to bedrest no one has put them on him. He had them the first few months after the accident though.
Jon wasn't wearing hand splints--I have them in my car and they didn't ask about them. But I did notice that he was working his left hand. He can make some flexing movement but not much.
Jon will likely be in the ICU for at least 1 or 2 more days. He might be transferred to the "step down" unit or be able to go back to a nursing home level of care. Nurses can't second guess that! Still haven't run into a doctor except for a very brief meeting on Thursday evening.
It was good to see him awake. He was quite tired after a half an hour so we left.
Barb called this morning to check on how he was doing. The nurse said he was keeping him busy with "commands." She hurriedly explained it wasn't necessarily a bad thing he just needed repositioning or the TV channel changed. She also said he slept well and did not indicate any pain. Food tube is running at 50 mL an hour. If he tolerates that well it will be slowly increased every 4 hours.
I will be going to see him this afternoon so I'll see how everything is going.
Saturday, June 4, 2011
I thought I’d change my reporting today and just list the things I learned
While visiting Liberty West:
none of the 3 I was talking with were working yesterday so they didn’t know if he was unresponsive when he left
they were stunned to learn he was as sick as he is
his catheter had been changed at the end of May
they had a urinalysis done a little over a week ago and no abnormalities were found
I got a copy of his meds to take to the hospital--they asked about it last night but had not called to have it sent over yet
the bedsore on his leg is tunneling quite a bit and some go to the bone...so while the perimeter is getting smaller the depth is not improving.
While talking with nurses at St. V.’s:
Jon’s vital signs are normal and stable
when not sedated Jon is very unhappy with all the tubing and paraphernalia that goes with it--when he realized I was there he mouthed “take it out, now!”--we heard that lots right after the accident
when mildly sedated he can move on command and answer yes/no questions
at this time when asked about pain he said yes so they gave him a mild pain killer--had just administered that before I got there so he didn’t realized I was there
I observed that he can thrash his body quite well-especially when thoroughly frustrated!
his color is returning and he looks so much better
they cut his hair! I have been meaning to do that for two months but couldn’t figure out how to do that while he was flat on his back. They did it just before changing his sheets--it looks pretty nice
they aren’t using a wound vac...their wound nurse changed the type of dressing being used which is okay. if I remember correctly sometimes what is needed is a chang-up in the treatment to spur the healing process
he did have a CAT scan but there was only a preliminary report so I couldn’t get any details
his potasium level has returned to normal so there is no more need for extra calcium
did not have a chance to talk with any doctor
That just about does it--if I forgot anything I’ll report it tomorrow.
Friday, June 3, 2011
It’s been a hectic day. Carol and I headed for Toledo to see Jon about 2:30 this afternoon. We were by-passing Napoleon when we received a phone call from Liberty West saying they were concerned about Jon’s distended stomach and were sending him to St Vincent’s for a CAT scan....he also seemed to be disoriented. As soon as they were done talking with me they were going to call and make arrangements for transport. Knowing how long that takes sometimes, and Carol had planned on using my computer to finish some things that needed taking care of, we decided to go back to my house--about a 15 minute drive.
Around 5 we got back on the road...we had checked with Liberty and he hadn’t left yet so we decided to stop and eat supper. When we were back on the road we called the hospital and he had just arrived. When we were at the exit and nearing the hospital he had just been sent upstairs for the scan. Remembering that Liberty had said he seemed “disoriented” we were amazed to see him completely out of it and on oxygen. His breathing reminded us of the early days in Ft. Wayne and Green Springs when his breathing looked like someone was kicking him in the chest. In talking with the nurse she said he was going to be sent upstairs to the ICU unit and would probably be in the hospital for 3-4 days. It seems he has a severe urinary tract infection which has gone into the kidney...which is also looking damaged. Not necessarily from this episode but possibly from previous episodes--possibly the accident? His condition was labeled septis (a severe illness in which the bloodstream is overwhelmed by bacteria.) When they drained the bladder it was loaded with pus. Then they checked his food tube which evidently didn’t look great either. They removed the tube connection and suctioned 500mL of thick yellow “gunk”-- a new medical term!
While we were there they inserted the dreaded breathing tube down his throat which had an immediate effect on his breathing, blood pressure and heart rate--bp had been low and heart rate high. While he is on the ventilator he will be sedated and pretty much unaware of what is going on. (We couldn’t rouse him at all.) They will however, take him off the sedation medication for a short time each day... to see how well he is doing(?)
He also has a special central line IV placed in the neck for medication and drawing blood. They were adding calcium to his medications because his potassium was high and calcium helps protect the heart. His meds include vancomycin, medazalom HCL/sodium chloride. We asked about a white blood cell count and the nurse gave the number 18 which she said was on the high side but not seriously so. Carol and I are confused because we thought normal ranges were much higher than that but she didn’t say which unit of measurement they were using. In looking up normal counts I found the normal range of 4,500-10,000 white blood cells per microliter (mcL) which sounds more like what we were thinking.
Visiting hours are from 10 to 12 in the morning 2-4 and 5-6 in the afternoon and 9-10 in the evening, 2 visitors at a time. He will however, be completely out of it and totally unaware of your presence. I will be using the blog much more to keep everyone posted. The blog address is www.jonpc.blogspot.com. His room is 115. Mercy St. Vincent Medical Center, 2213 Cherry Street,Toledo, Oh 43608-2691
Wednesday, June 1, 2011
Saturday, April 9, 2011
Monday, March 28, 2011
It's almost April and I sure wish the weather was acting like it...although some place in the northeast they had another bout with snow and we haven't had that, thank goodness!
Thursday, March 24, 2011
Friday, March 18, 2011
Thursday, March 17, 2011
This week has been crazy. Angelique, Jeff, Greg and I went to Ft. Wayne on Sunday and I checked with the nurse to see if there was any sign that he would be discharged yet. She checked and couldn't find anything but did say they were trying to get his blood pressure stabilized. However, On Tuesday, I received a call from Cretia saying our appeal had been denied. It was quickly followed by a call from the social worker in Ft. Wayne saying they were discharging Jon that day and sending him to the facility in Toledo we weren't crazy about. I tried to say we didn't want him there but it was to no avail. I called back with several names of places she could try but about noon she said it was too late, he had already been discharged and "was out the door as we speak."
"Well, out the door as we speak" is the infamous quote of the week! Tuesday's plans were for Carol and I to go to Toledo to check out a place that Brookview here in Defiance had said would take him. We were far from thrilled when we read their inspection reports for the last 7 times so we decided to go see Jon. Since the call with the social worker was around 12:30 we thought if we got there by 4:30 he probably would be settled in by the time we got there. We found the place, went to the reception desk and they never heard of a Jon Castanien, they checked the lock-down area where he would be and they had no word of him either. We called the hospital and he hadn't left yet! We went back across town to get a new mouth-piece for his Camelback water bag he uses to get drinks and stopped to eat. We still had an hour to kill so we decided to visit his Uncle Raleigh and cousin Eric. We joined them at Bob Evans and had a nice chat. Another call to the new place, Liberty Nursing Home, and he still wasn't there. Called back to the hospital and asked for the address. Seems they sent him to a sister facility several streets from the place we had stopped at. When we called them around 9 he had just arrived. Since we were both beat we decided to go back home.
Greg and I went to see Jon yesterday. This place is older but looked okay...and its inspection ratings, while not great, were at least better than the other one. We visited a while and Jon said he couldn't eat yet. Actually he said he couldn't swallow. I checked with the nurse and she said he needed a swallow test with the speech therapist and that probably it would be done tomorrow (which is actually today.) I reassured Jon that I was sure he could swallow--Sunday he ate a huge sandwich according to Angelique--and did he want to try a few swallowing exercises? We did some together including the silly repeating of the syllable, hee hee hee! in a voice as high as possible. Carol called today and they said the reason he needed the test was because Ft. Wayne did not include eating in their orders and since he came with a feeding tube they assumed he didn't eat.
In general, Jon was extremely quiet, didn't want the blinds open and had the door shut all day. The TV was on (NCIS of course) but his bed wasn't positioned well to see it. I regret not asking if we could move it to an angle--or at least turn on the TV in the other part of the room. He has no room mate. Jon stopped doing exercises with his neck when his original physical therapist left at Westerville and I'm not sure he can turn his head much at all.
That's all for now. I've probably left out some but you've got the gist of it. Have had trouble getting into this blog but think I've gotten things straight in my head now.
Looking forward to Spring as I'm sure most of you are, too!
(Jon's on complete bed rest and his chair is in my living room so he won't get getting about too much for a while.)