They had his feeding tube turned off all morning waiting for the new feeding tube. Well , they were too busy in radiology or the OR (I don't know where they do this procedure) they had some emergencies come in so they postponed it until tomorrow morning. So they hooked up his old feeding tube. Then they will have to turn it off again at midnight for the procedure. I hope it doesn't get postponed again or he may starve.
So I was looking at his feet today. By the time he gets out of the hospital his feet will be as soft as a newborn babies. When you don't walk on them for a month and get the normal wear and tear they build up a lot of extra skin that doesn't sluff off. So today he got a foot treatment. Wow. I bet that felt good... or horrible, I couldn't tell. He did try to open his eyes while I was working on them.
Family
Tuesday, September 30, 2014
Dad likes Joshies mission letters
Dad is still very much the same, he rests most of the day, but mom says when us kids come and see him, he really seems to try hard to open his eyes and do little movements. Today when Trisha and I saw him he was opening his eyes a lot more than normal, but wasn't able to controll the movement of those cute little eyeballs, when he opens them just slighlty it looks like he can keep them straight and centered more but if he opens them wider, they tend to wander around.
We usually just ramble on about our boring lives, but every now and then we'll say something that seems to perk his interest more and he'll make a stronger attempt to move, I believe to let us know he's there. Today I read Josh's last mission letter to him, he moved his right leg twice and tried to keep his eyes open almost the whole time I read his letter.
We suggested Mom read him the scriptures, or ensign talks to him. I have wondered if he may be on a spiritual low. I know if I haven't been to church in a while or not had the sacrament for a while I seem to just need a boost, I'm sure Dad probably feels the same. Today when we went in the nurses had the TV on for him and it was some dumb soap opera, I laughed and told Dad I would turn it off, that would be enough to keep him in that coma, haha. It will be nice to be able to watch conference next week with him, this way he can hear conference with us, like going to church, I'm sure he misses it.
They are not feeding him for awhile to drain his stomach, then they'll replace the feeding tube he has in his nose and put a port in his tummy. They said he needed to have an empty stomach to place that, we are worried after they put him "under" while they place that tube, that it may be another week before he starts to "wake up" again. Thanks so much for all the prayers!
We usually just ramble on about our boring lives, but every now and then we'll say something that seems to perk his interest more and he'll make a stronger attempt to move, I believe to let us know he's there. Today I read Josh's last mission letter to him, he moved his right leg twice and tried to keep his eyes open almost the whole time I read his letter.
We suggested Mom read him the scriptures, or ensign talks to him. I have wondered if he may be on a spiritual low. I know if I haven't been to church in a while or not had the sacrament for a while I seem to just need a boost, I'm sure Dad probably feels the same. Today when we went in the nurses had the TV on for him and it was some dumb soap opera, I laughed and told Dad I would turn it off, that would be enough to keep him in that coma, haha. It will be nice to be able to watch conference next week with him, this way he can hear conference with us, like going to church, I'm sure he misses it.
They are not feeding him for awhile to drain his stomach, then they'll replace the feeding tube he has in his nose and put a port in his tummy. They said he needed to have an empty stomach to place that, we are worried after they put him "under" while they place that tube, that it may be another week before he starts to "wake up" again. Thanks so much for all the prayers!
Same as Sunday
I know a lot of people are reading this and it was suggested to me by my Brother in Law that if there is no change that I should post it because people are looking and wondering every day. So I will say that he is the same and the antibiotics are working good on his blood infection. They did do a heart sonagram of him and his heart looks good, (sometimes with strep septis it can effect the heart)
Thank goodness for small miracles. They also had to replace his feeding tube as his was blocked.
They are eventually going to have to put a feeding tube in that goes into his abdominal wall directly to his stomach or small intestine, I don't know which, but they won't do that untill his septus is cleared up. Love to all, keep the faith.
Thank goodness for small miracles. They also had to replace his feeding tube as his was blocked.
They are eventually going to have to put a feeding tube in that goes into his abdominal wall directly to his stomach or small intestine, I don't know which, but they won't do that untill his septus is cleared up. Love to all, keep the faith.
Sunday, September 28, 2014
modern medicine!! Useful isn't it!?
Just to let you know Randy had a way better day today than yesterday. They got the results back on the blood work and Randy has septus again. It is a strep infection that you can pick up from being in hospitals. They said his lungs still look clear. They started him on antibiotics last night and they are working well. He is so much better today than yesterday. He actually looks calm instead of struggling. They even had to put him on the ventalator again. He was still on it today when I went in. His color is better. He opened his eyes just a little, maybe 10 seconds. He wasn't running a fever. They took out his Dialisis port where they did the Plasma Phresis and his IV pick line and started a new one.
It is good to know he is still in there and responds ever so slightly occasionally during the day.
Some of the kids went and visited him and they took this crazy picture. This is how they have fun with their Dad now.
It is good to know he is still in there and responds ever so slightly occasionally during the day.
Some of the kids went and visited him and they took this crazy picture. This is how they have fun with their Dad now.
Bump in the road to recovery
Yes, it is early. I woke up at 3:30 a.m. thinking about Randy. Finially decided to blog a post about him. Yesterday he had what I shall call a bump in the road to recovery. He spiked a fever. His heart rate and blood pressure went up. They called the Dr and he ordered a chest x ray, blood work, urine sample, etc to see where the infection is coming from. He has so many tubes coming out of him to help him, but that also makes pathways for infection to enter. Bless our skins defense in our everyday lives. They also started him on IV antibiotics. He is totally unresponsive 99.9% of the day.
I am with him every day but I sure miss him. All I can say is he is a really good listener at this point in his life. So you may be wondering what I do all day long while I sit up at the hospital. I will talk to him and tell him the family news every day. I watch his vital signs and tubes and let the nurses or respiratory therapists know if there is a problem. I help the PT do his exercises, I help turn, clean and position him. I listen to all the beeps and alarms and if they make an unusual sound I let them know about it. I crochet baby nursery hats, visit with Randy's mom, and play ocean sounds and music Randy likes to listen to. I like to visit with all the people that take care of Randy. There are some amazing nurses, therapists, support people up there. They have interesting stories and lives and I can say I will miss them when they move him. He has been there so long that I see the ICU fill up and empty out and Randy has been there the longest. It's too bad they don't get to know him, because he is an awesome guy and I know that they would love him as we all do.
Keep him in your prayers. They really help me to hang on. Maybe this next fast Sunday when you pray could you ask specifically that he would be able to respond enough to us so we would know how to help him better. It's hard to help someone when you have no idea what they are feeling. Kinda like a baby can't tell you, but worse because at least they can cry. Thanks, we love you all.
I am with him every day but I sure miss him. All I can say is he is a really good listener at this point in his life. So you may be wondering what I do all day long while I sit up at the hospital. I will talk to him and tell him the family news every day. I watch his vital signs and tubes and let the nurses or respiratory therapists know if there is a problem. I help the PT do his exercises, I help turn, clean and position him. I listen to all the beeps and alarms and if they make an unusual sound I let them know about it. I crochet baby nursery hats, visit with Randy's mom, and play ocean sounds and music Randy likes to listen to. I like to visit with all the people that take care of Randy. There are some amazing nurses, therapists, support people up there. They have interesting stories and lives and I can say I will miss them when they move him. He has been there so long that I see the ICU fill up and empty out and Randy has been there the longest. It's too bad they don't get to know him, because he is an awesome guy and I know that they would love him as we all do.
Keep him in your prayers. They really help me to hang on. Maybe this next fast Sunday when you pray could you ask specifically that he would be able to respond enough to us so we would know how to help him better. It's hard to help someone when you have no idea what they are feeling. Kinda like a baby can't tell you, but worse because at least they can cry. Thanks, we love you all.
Saturday, September 27, 2014
One small movement at a time!
As you all heard yesterday, my dad has been lately getting the hiccups. They all said that it was a good thing because that meant that he was getting his breathing muscles back! They say when you have GBS you lose sensation from your feet to your head, and then regain sensation from your head to you feet!
As of right now pretty much everything is attrophied. So he is really weak, nearly paralyzed. That being said, on thursday he moved his arm. it was on a pillow at his side and he was able to flop it over onto his stomach. Also good news is that normally you will see little nerve twitches throughout his whole body. What has changed is that he slightly moved his foot.. It almost seems as though he is testing his body seeing what moves and what doesn't. They arent big movements but they are movements all the same.
His vision still is not working right. Most of the time when I go in there he has one eye halfway open. Once it seemed like he was looking at me.... but I really think I was just standing where his eye happened to be floating that day.. :) I will take what I can get though!
I can't wait for him to be moved down here so that he will be closer to home. I know you all wish to see him. Right now is still not the best time. When he is conscious and stuck in a bed, I'm sure he will be bored out of his gored and would probably enjoy seeing visitors. But for now he is still resting as much as he can.
Thank you all again for the prayers. :) We are continually feeling very blessed everyday.
As of right now pretty much everything is attrophied. So he is really weak, nearly paralyzed. That being said, on thursday he moved his arm. it was on a pillow at his side and he was able to flop it over onto his stomach. Also good news is that normally you will see little nerve twitches throughout his whole body. What has changed is that he slightly moved his foot.. It almost seems as though he is testing his body seeing what moves and what doesn't. They arent big movements but they are movements all the same.
His vision still is not working right. Most of the time when I go in there he has one eye halfway open. Once it seemed like he was looking at me.... but I really think I was just standing where his eye happened to be floating that day.. :) I will take what I can get though!
I can't wait for him to be moved down here so that he will be closer to home. I know you all wish to see him. Right now is still not the best time. When he is conscious and stuck in a bed, I'm sure he will be bored out of his gored and would probably enjoy seeing visitors. But for now he is still resting as much as he can.
Thank you all again for the prayers. :) We are continually feeling very blessed everyday.
Friday, September 26, 2014
No news is good news
People are asking me why I don't post every day. Well, when things are the same and I have nothing new to say then I don't put anything up. So I guess you should think, no news is good news. At least he isn't getting worse. This is going to be a long and slow process.
He is still unresponsive, but there has been one huge improvement that started last night and went into today. They are trying to take him off the ventalator. He was only on about 6 hours yesterday and last night he didn't have to go back on it all night long. This morning when I got there about 10 a.m. he was still off it. That is excellent! He still has his trek tube so they can suction his lungs out if he needs help with that. He is also getting more "hickups" they said that is good because his diaphram is starting to wake up. (Breathing muscles).
He didn't open his eyes or look at us at all today. My daughter, Lisa, serches the internet a lot and there is a type of GBS that effects your eyes more. It is called Miller Fisher. One lady said she had that type and she didn't open her eyes for 7 weeks. If this is the case he only has 4 more weeks left.
Keep praying and fasting for him. I really feel your support and get comfort and peace from it.
Thanks for all your help. You are the best ward ! Love to all.
He is still unresponsive, but there has been one huge improvement that started last night and went into today. They are trying to take him off the ventalator. He was only on about 6 hours yesterday and last night he didn't have to go back on it all night long. This morning when I got there about 10 a.m. he was still off it. That is excellent! He still has his trek tube so they can suction his lungs out if he needs help with that. He is also getting more "hickups" they said that is good because his diaphram is starting to wake up. (Breathing muscles).
He didn't open his eyes or look at us at all today. My daughter, Lisa, serches the internet a lot and there is a type of GBS that effects your eyes more. It is called Miller Fisher. One lady said she had that type and she didn't open her eyes for 7 weeks. If this is the case he only has 4 more weeks left.
Keep praying and fasting for him. I really feel your support and get comfort and peace from it.
Thanks for all your help. You are the best ward ! Love to all.
Tuesday, September 23, 2014
He's still got it!
Ok so lets see! Dad opened his eyes for roughly 30 seconds. He focused them for maybe five seconds. And he blinked when mom asked him to, not when the nurse asked him to. Apparently he will do great things for love! He is doing his treatments every other day. Today was his day off. his last plasma phoresis will be friday! We will hopefully be moving him on friday down to the Utah valley Specialty hospital. He still is not really concious, and is not ready for visitors. however since most of you want to see him anyway we are sharing him with you via camera. :)
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As Mom says, "He's still got it!" and he really is and always will be my cute little Papa.
He spends most of his days getting cool rags placed on his forehead, receiving foot massages from his Mama. Listening to the ocean, Simon and Garfunkle, Mo-tab, and the little Mexican pipe music. and listening to us ramble on about our non eventful lives, and my dating life(which he is getting WAY more information now that he is in a coma). Normally it goes something like this:
Dad: How was your date??????!???!??
Me: It was good
Dad: Do you like him????!??
Me: Sure, He's nice.
Dad: Well what did you do?????!
Me: Um... (insert facts about what we did)
Dad: I'm just interested in your life, I'm not hounding you.
Me: I don't think your hounding me
Dad: Do you owe Ice cream??????
Me: What do you think?
Dad: what time did you come home last night.
ME: Now I think your hounding me..... (I leave the room) haha
They are GREAT conversations.
I'm sure if he could talk he would first be telling you that he was fine, and that he would be asking about how you all are doing and what funny things are happening in your lives, and wondering about the different adventures everyone is going on. He cares for all ward family and his family family.
We are super grateful for all the prayers. They are felt by our whole family, and we are continually amazed at the love that is felt. Thank you again.
As Mom says, "He's still got it!" and he really is and always will be my cute little Papa.
He spends most of his days getting cool rags placed on his forehead, receiving foot massages from his Mama. Listening to the ocean, Simon and Garfunkle, Mo-tab, and the little Mexican pipe music. and listening to us ramble on about our non eventful lives, and my dating life(which he is getting WAY more information now that he is in a coma). Normally it goes something like this:
Dad: How was your date??????!???!??
Me: It was good
Dad: Do you like him????!??
Me: Sure, He's nice.
Dad: Well what did you do?????!
Me: Um... (insert facts about what we did)
Dad: I'm just interested in your life, I'm not hounding you.
Me: I don't think your hounding me
Dad: Do you owe Ice cream??????
Me: What do you think?
Dad: what time did you come home last night.
ME: Now I think your hounding me..... (I leave the room) haha
They are GREAT conversations.
I'm sure if he could talk he would first be telling you that he was fine, and that he would be asking about how you all are doing and what funny things are happening in your lives, and wondering about the different adventures everyone is going on. He cares for all ward family and his family family.
We are super grateful for all the prayers. They are felt by our whole family, and we are continually amazed at the love that is felt. Thank you again.
Saturday, September 20, 2014
Sept 20, The treatment continues
The treatment continues: Sept. 20, 2014
Kati has been out of town for the last two days so I thought
I would update you on Randy’s
progress. On Friday they started
his Plasma Phreresis treatment. They
also did an EEG to check on his brain function.
I had to leave before they did it so didn’t get to see it done. On Sat. they did the second treatment. This machine is amazing. The red cross owns it and has it’s own technicians to run it. The nurses don’t even know how it works. This treatment is so rare. Basically Randy has a portal like a dialysis
machine uses. They pump Randy’s blood out
of one tube, mix it with an antiquagulating agent and then spin it to divide
the plasma out of the rest of his blood.
Then his plasma is pumped into another bag. His blood, minus the plasma, is mixed with
albumin. (Like plasma that is made in a lab, not
from someone’s blood donation) Then it goes through a heating coil and pumped back into Randy. It takes a little over an hour to do the
procedure. They do it five times over
at least a five day period. It is better
if you take a rest between treatments.
Randy now has 2 treatments. They
are giving him Sunday off. Will do the
next 3 on Mon, Wed and Fri.
Randy is
still unresponsive. He tried to open one
eye, I think. It opened half way for
about 5 seconds during the
treatment.
His feeding tube has to be replaced tomorrow. They have to take him to radiology tomorrow
to put it in. It is blocked off and no
longer works. It’s been in 16 days so
that’s not too bad. They started an IV until he gets his feeding
tube replaced. Thank you for keeping him in your prayers.
Friday, September 19, 2014
A Day of MIracles
Well today I decided to fast for Randy, actually it was last night after supper. I have always sturggled with fasting. It is very hard on me but as I was deciding the Holy Goost or my gardian angels said,"how hard is this on Randy at this time? Fasting for you is nothing compard to what he is going through." So I felt I should do it and so I did. So here are the small, maybe large, miracles that happened today.
1. Troy called, my brother in law who is a neurologist, way smart, by the way. Troy found out who the Neurologist was for that day and found his Fax # and got him some information on "Bickerstaff Ensephlitis" and the Dr. was open enough to read and study it and Randy's case and agreed to do the different treatment for it, which is a big "pain in the neck" for him. The Dr admitted he didn't even know how to go about getting it all set up, but said he'd figure it out and he did. They don't even have that machine in their hospital.
2. Lisa found a GBS support group on line and asked people about Dad's symptoms. After they wake up all of them said they were in excruciating pain but were paralized so they could't say it to anyone. Also that they were HOT!. The Dr. agreed to give him pain meds, especially before they to Physical therapy on him.
3. They wanted to transfer him to Provo to a rehab Hospital today and that has been postponed untill he gets this new treatment. It's called Plasma Phreresis, by the way. and it's what they do to treat Bickerstaff Ensehlitis. It's kinda like dialysis. They take your blook out and "wash" it of it's antibodies. Randy's own antibodies are attacking his myelin sheath around all his muscles in his body, making them paralized so he can't move anything or very little.
4. He got a new Physical therapist today that warned us about Randy's shoulders, she said we have to be extra careful with them now because she noticed his shoulder muscles have atrophed to a point where his shoulders could dislocate easily if you pulled on his arms at all while turning or positioning him. Yikes!
5. Also one of his previous nurses came and talked tome. She encouraged me to not "move" him too quickly out of ICU to a rehab because he is not out of danger yet and not stable enough. He has not gotten the right treatment for what's going on with him. I've been praying to know what to do with him about moving. I really want him to be closer down here, I hate driving in rush hour traffic to SLC every day but I would hate even more to put Randy through one more minute of this that he already has to go through.
So that's a lot of miracles today. :) Thank your Lord for keeping us in your sights and blessing us in this trial and for good people to watch over us.
Thank you for all your prayers. I can really feel comfort from them, and as you can see Randy is being blessed for it.
1. Troy called, my brother in law who is a neurologist, way smart, by the way. Troy found out who the Neurologist was for that day and found his Fax # and got him some information on "Bickerstaff Ensephlitis" and the Dr. was open enough to read and study it and Randy's case and agreed to do the different treatment for it, which is a big "pain in the neck" for him. The Dr admitted he didn't even know how to go about getting it all set up, but said he'd figure it out and he did. They don't even have that machine in their hospital.
2. Lisa found a GBS support group on line and asked people about Dad's symptoms. After they wake up all of them said they were in excruciating pain but were paralized so they could't say it to anyone. Also that they were HOT!. The Dr. agreed to give him pain meds, especially before they to Physical therapy on him.
3. They wanted to transfer him to Provo to a rehab Hospital today and that has been postponed untill he gets this new treatment. It's called Plasma Phreresis, by the way. and it's what they do to treat Bickerstaff Ensehlitis. It's kinda like dialysis. They take your blook out and "wash" it of it's antibodies. Randy's own antibodies are attacking his myelin sheath around all his muscles in his body, making them paralized so he can't move anything or very little.
4. He got a new Physical therapist today that warned us about Randy's shoulders, she said we have to be extra careful with them now because she noticed his shoulder muscles have atrophed to a point where his shoulders could dislocate easily if you pulled on his arms at all while turning or positioning him. Yikes!
5. Also one of his previous nurses came and talked tome. She encouraged me to not "move" him too quickly out of ICU to a rehab because he is not out of danger yet and not stable enough. He has not gotten the right treatment for what's going on with him. I've been praying to know what to do with him about moving. I really want him to be closer down here, I hate driving in rush hour traffic to SLC every day but I would hate even more to put Randy through one more minute of this that he already has to go through.
So that's a lot of miracles today. :) Thank your Lord for keeping us in your sights and blessing us in this trial and for good people to watch over us.
Thank you for all your prayers. I can really feel comfort from them, and as you can see Randy is being blessed for it.
Thursday, September 18, 2014
Todays Update
Thursday, September 18th, 2014
So we’ve already told everyone that Dad has what is called GBS, I’ll go into a little more details about what this means and what his prognosis is.
All cases of GBS are different, some are more mild and people experience just a numbness and tingling in their hands and feet and others are more severe, like our Dads where everything is affected including the muscles that help him breathe, (this is why he is on a ventilator) This has caused total paralysis. The immune system attacks its own nervous system causing demylenation of the myelin sheith, which is just a fancy way of saying when your brain tells something to move, electrical impulses from your brain travel to that area of your body through the neurons, myelin sheiths are the outside layer. So in a nut shell because his are damaged at this time, when his brain says move, nothing does.
Hope that makes a little since, and if anyone understands this differently, feel free to chime in. I may have explained it a little wrong.
So before they knew what he had, he was having difficulty breathing, one of his lungs collapsed, and he was transferred from the med surg floor to the ICU and placed on a ventilator. He had an oral ventilator for about 1 week then they switched it to a trach, (in the neck) 5 days ago. While he was on the oral ventilator they had him sedated because all the tubes go down his throat, and as you can imagine caused a big gag reflex. Oral Vents also can cause vocal cord damage so they don’t like them that way if it looks like they’ll need the vent for long periods of time. During this time, dad was pretty sedated but would open his eyes when you came in and told him you were there, the day before he got the trach, he was squeezing hands once for yes and twice for no, he would move his arms and legs just a little, so we were happy about that.
After the trach was placed Dad has been pretty unresponsive ever since, when Physical Therapy comes into work with him he can’t do much of what they ask him. He hasn’t even been able to open his eyes much since then, and I mean maybe he’ll open them once a day for about 2 seconds, and that is it, most of him movement is twitching limbs. I myself was worried that maybe he has had some brain damage from the swelling that was on his brain.
Last night out of frustration and lack of knowledge about what is going on I looked into a GBS support group. Which I firmly believe I was guided there by angels above! I commented on what my dad was going through and went to bed really frustrated. The following morning I woke up to 7 people who have had GBS or family members who have, who all told me that complete paralysis was totally normal for them, including eyes and eyelids, most people were in this phase for 2-3 weeks, this was such a relief for me! All said they were totally aware of what was going on, and their family members thought they were in a coma, but they just couldn’t move anything to let them know that they were there.
One thing one women mentioned was how hot she was, she said, “He may be very sensitive to heat. I was and still am. In order to sleep I have to have a fan blowing directly on me. I remember that once I could let people know I was hot and they started the fan along with cool wash clothes on my forehead it was heaven!” Dad has been dripping in sweat the last week or so, we thought he was fevering, so this morning mom went armed to the hospital with a squirt bottle to spray him down, and placed wash clothes on his head. Ya go mom!
The other big thing was pain control, all of them stated how bad the pain was, here’s what someone said about her pain, “One thing to know is that pain management is so very important. I was in excruciating pain and couldn't let anyone know. Please make sure you are advocating constantly for your dad to make sure his pain is managed.” This was such an awakening for me, Dad hasn’t been getting anything for pain since the trach because they didn’t want him more “groggy” and wanted him to “Wake up”, His blood pressure rises during Physical therapy and he grimaces when they move him, What a blessing it is to know, so we can get him the pain medication he has been needing.
Lastly Dads case has been a little different than normal GBS, he has had an elevated WBC ( white blood cell ) count which I guess isn’t normal with GBS, we now think that he has what is called Bickerstaff Brainstem Encephalitis, I am not super familiar with it, but it is really similar to GBS and recovery is similar, (months to years) depending on the case, they are starting Plasma exchanges (plasma cleaning I guess, like dialysis) over the next 5 days, then he will be transferred to a rehab facility in Provo where he's in for the long haul, relearning to do all the things that we take for granted on a daily basis.
Well this is pretty much all, We have had wonderful friends, family and neighbors who have kept us in their prayers, thank you so much, we have felt them!! I Truly feel that your prayers have guided us find what we needed to do to help him! Waking up this morning to all those messages brought tears to my eyes, what an answer to prayers!! Thank you!!
In Case you missed the Facebook updates Aug31-Sept 18
Aug 31
Dad update: for those of you who don't know and care to know, my dad is in the hospital, he's been sick, starting about 2 weeks ago, and just worked through it living normal, like he normally does, until tuesday. Then he couldn't ignore it anymore and started sleeping all day, his skin was achy all over, then his joints started hurting, and his eyes, with a extreme case of vertigo. My mom took him to the dr. on wednesday and they told him it was the flu. he didn't get better so yesterday morning he was taken to the ER. they ran some tests, then took and MRI, then did a spinal tap, and found white blood cells in his spine, which means he has meningitis. He has now been admitted to the Hospital for the next 2-3 days while they wait for the culture samples to come back to tell us if it is bacterial meningitis, or viral. We are hoping for viral! His left optic nerve is inflamed so he is seeing double, so he will be meeting with a neurologist on tuesday. This is all I know for now, I will keep you all updated as I hear things. Please Keep him in your prayers. Also please no visitors due to the fact that he is incredibly weak, and has potential to be highly contagious.
Sept 1
Father update: we got the tests back and he has Aseptic meningitis, Which means that it is the viral meningitis. Which means its not the highly contagious one. However, he is still is not up for visitors. He will probably be in the hospital for a little while longer. Thank you all for your prayers, they are being felt!
Sept 2
Dad Update: Mama Bear came out today, The timpanogus dr wouldnt let dad see a neurologist or an infectious disease dr. so she had him transfered up to St Marks hospital today so they could work with doctors who would work with her. He is doing a little worse today, and is not able to walk. Please still no visitors, he is not up for it. thank you for the prayers, they are very much appreciated during this time of need
Sept 3
Papa update: last night the left side of his body started going numb. He could wiggle his toes, but that's it! Today he is having a hard time swallowing, and breathing, so today he was put on oxygen, and given a feeding tube. They took another MRI with more contrast to see if they can see anything else, and did another spinal tap. Thank you all for the prayers! We are very grateful! And continually amazed at the love that we have felt this past week! Please keep them coming!
Sept 4
update on my dadio: today has been an emotional rollarcoaster... well this whole week has, but today is nothing new. I talked to my mom this morning and she told me nothing had changed. This made me really optimistic. Then she called me around 2 and told me that his breathing had gone down, and they were putting him on a venitilator and that he was getting moved to the ICU where he will be in an induced coma. Turns out one of his lungs had collapsed, and he has pneumonia. turns out he also has sepsis. This was bad news. I then went up to see him and I realized how blessed we were! He is looking so much better, he is able to breath without sounding like hes under water, and he is getting so many antibiotics and other things that are helping him heal all over. My aunt said that this could possibly help more than what we know is going on. My mom also has to be out of there by 8, so she is getting the rest she needs. He also moved his left hand AND his left leg. (He lost that function on tuesday) so that is good. We are so very thankful for your prayers, and we are learning everyday that God works in mysterious ways. Thank you again for your love and support! I assure you that it means so much to us all
Sept 5
latest with my pops: they are now treating dad for something called gillian-barre syndrom. its like an auto-immune disease that attacks the peripheral nervous system, and it goes away. So thats good. It is treated with immunoglobulin infusions via IV. He has already started this treatment. This is something that once its done can take anywhere from 1-12 months of therapy. However people do overcome this. they can get back to where they were. We are hopeful with this treatment. please keep him in your prayers! They are being felt! and we are continually amazed at the love that is being shown to our family at this time of need!
Sept 7
fatherly update: sorry I didn't post yesterday... we didn't know much. we won't know how his treatment is working till tomorrow. and either today or tomorrow they are planning on giving him a trach tube. This will help him regain his speech better, it will help the staff be able to clean out his lungs better, he will be able to be weaned off his vent. AND he might not have to be sedated for one of those. also chicks dig scars. so thats a bonus. even though he doesn't need one for mom to like him. and I qoute "He's still got it" said as she is patting his arm in the ICU! He is wearing feet orthotics to prevent his foot drop. I think this is all. thank you for the prayers! and for all the help with everything
Sept 7
news about my dad: according to my brother, fasting is like praying but on steroids! today has been a great day for my dad! so thank you for your prayers! they ARE helping! today he opened his eyes and focused on my mom ( for the last week whenever he would open his eyes, they would just roll all around) and when they came in to test his reflexs, he moved his big toe. Also when the nurse came in to take care of his oral health he didn't like it and moved his right arm half way to his mouth to stop her. This is great news! The respiratory therapist came in and didn't have to suction out his lungs and said they were sounding great, and they his blood work came back negative... I'm pretty sure that means he is not septic anymore! Thank you thank you thank you for the prayers! these may seem like small things, but they are truly steps in the right direction!
Sept 8
Dad is still stabilized, he is still in the ICU, however the new dr there decided that they wanted to wait a little bit before giving him a trach, so we will see what happens in the next couple of days! Thanks again for the prayers!
Sept 9
Dad news: today dad is still doing about the same! He opened his eyes a little bit more, and was looking around at the ceiling. He will probably be getting a trach tomorrow. The Dr decided that it was time. They are just waiting to for the OR dr to have time. please keep the prayers coming :))
Sept 11
update on the pops: He can officially be added to the trach club! he got one today! He is a little tired, so the machines are breathing for him today so he doesn't have to use his energy for that. His blood pressure is really stable so they got to removed his arterial line (i guess it measured his blood pressure??) and when the nurse was pulling off the tape from his arms ( poor guy) he reached one arm across his body about an inch from his other arm. He lifted his head and even mouthed the words "ow". Now he just as a normal blood pressure cuff. He is not sedated, but is pretty out of it still. He is improving a little more each day. I think he is already relieved that he doesn't have a vent going down his throat now. Thanks again for the prayers They are helping more than you know!
Sept 12
whats new with dad: Today when the Nurse was checking all reflexs he moved his feet. Thats great news. Also they are trying to move him to Utah Valley Specialty hospital, down by the riverwoods! They need to work things out with insurance first, but it's an extended care facility AND it's way closer to home! If he can be moved, then it will be hopefully on monday!
Sept 13
Dad update: This is Marie posting this this evening. I went up today and Randy has been very unresponsive for the last 2 days. Ever since they put his Trach in. The Dr's said sometimes when you're real sick it takes a lot longer for the anethesic to wear off. He is also having a low grade fevor that they don't know where it is coming from. The Dr. ordered another MRI of the lower spine and a cat scan today. They are trying to move him to an extended care ICU facility. The insurance should let us know by Monday, I hope. It is in the riverwoods, I think it's the same one Heidi Stay went to. They have rehab, and physical therapists, and all that stuff he will need in the future. He did move his right leg one time, just a little bit. which is great. He just sleeps all day.They haven't given him any sedatives for the last week, it's just his own bodies sickness that is sedating him. I appreciate all your prayers on his behalf. I can feel their power and comfort. Thanks to all you ward members who have helped Kati and I. To the coming home to a clean house to mowed lawn to cookies on the front steps, to a rototilled garden and filling in on my church calling and especially to Br Abbott and Ruder who are stepping up and filling in on all Randy's bishop jobs. Thanks, you are a great ward family and wonderful neighbors!
Sept 14
Nightly fatherly update: Dad was really tired today, so he didn't participate in his therapy! They are going to do another another spinal tap tomorrow. He is doing about the same as he normally is! He was given a blessing today, and during the blessing he opened his eyes, and he was moving more than normal! All good signs! Hopefully we get good news about him moving down here tomorrow!
Sept 15
Dad update: Our insurance has approved him to move up to provo, however he is currently not stable enough yet. He is less responsive than he has been. They did another spinal tap and are running 4 more tests on his spinal fluid to see if they can figure it all out. thank you for the prayers. they are felt and needed.
Sept 17
Daddio update: sorry for the lack of post yesterday! Not much is happening, he is still the same. They did take a chest x-ray yesterday and his lungs look clear! No more pneumonia! He is still unresponsive. We are still waiting for the tests to come back. The lymphoma test was a negative, as well as the west nile virus. That is all we can think of, sorry that not much has happened. thank you for the prayers and thoughts!
Dad update: for those of you who don't know and care to know, my dad is in the hospital, he's been sick, starting about 2 weeks ago, and just worked through it living normal, like he normally does, until tuesday. Then he couldn't ignore it anymore and started sleeping all day, his skin was achy all over, then his joints started hurting, and his eyes, with a extreme case of vertigo. My mom took him to the dr. on wednesday and they told him it was the flu. he didn't get better so yesterday morning he was taken to the ER. they ran some tests, then took and MRI, then did a spinal tap, and found white blood cells in his spine, which means he has meningitis. He has now been admitted to the Hospital for the next 2-3 days while they wait for the culture samples to come back to tell us if it is bacterial meningitis, or viral. We are hoping for viral! His left optic nerve is inflamed so he is seeing double, so he will be meeting with a neurologist on tuesday. This is all I know for now, I will keep you all updated as I hear things. Please Keep him in your prayers. Also please no visitors due to the fact that he is incredibly weak, and has potential to be highly contagious.
Sept 1
Father update: we got the tests back and he has Aseptic meningitis, Which means that it is the viral meningitis. Which means its not the highly contagious one. However, he is still is not up for visitors. He will probably be in the hospital for a little while longer. Thank you all for your prayers, they are being felt!
Sept 2
Dad Update: Mama Bear came out today, The timpanogus dr wouldnt let dad see a neurologist or an infectious disease dr. so she had him transfered up to St Marks hospital today so they could work with doctors who would work with her. He is doing a little worse today, and is not able to walk. Please still no visitors, he is not up for it. thank you for the prayers, they are very much appreciated during this time of need
Sept 3
Papa update: last night the left side of his body started going numb. He could wiggle his toes, but that's it! Today he is having a hard time swallowing, and breathing, so today he was put on oxygen, and given a feeding tube. They took another MRI with more contrast to see if they can see anything else, and did another spinal tap. Thank you all for the prayers! We are very grateful! And continually amazed at the love that we have felt this past week! Please keep them coming!
Sept 4
update on my dadio: today has been an emotional rollarcoaster... well this whole week has, but today is nothing new. I talked to my mom this morning and she told me nothing had changed. This made me really optimistic. Then she called me around 2 and told me that his breathing had gone down, and they were putting him on a venitilator and that he was getting moved to the ICU where he will be in an induced coma. Turns out one of his lungs had collapsed, and he has pneumonia. turns out he also has sepsis. This was bad news. I then went up to see him and I realized how blessed we were! He is looking so much better, he is able to breath without sounding like hes under water, and he is getting so many antibiotics and other things that are helping him heal all over. My aunt said that this could possibly help more than what we know is going on. My mom also has to be out of there by 8, so she is getting the rest she needs. He also moved his left hand AND his left leg. (He lost that function on tuesday) so that is good. We are so very thankful for your prayers, and we are learning everyday that God works in mysterious ways. Thank you again for your love and support! I assure you that it means so much to us all
Sept 5
latest with my pops: they are now treating dad for something called gillian-barre syndrom. its like an auto-immune disease that attacks the peripheral nervous system, and it goes away. So thats good. It is treated with immunoglobulin infusions via IV. He has already started this treatment. This is something that once its done can take anywhere from 1-12 months of therapy. However people do overcome this. they can get back to where they were. We are hopeful with this treatment. please keep him in your prayers! They are being felt! and we are continually amazed at the love that is being shown to our family at this time of need!
Sept 7
fatherly update: sorry I didn't post yesterday... we didn't know much. we won't know how his treatment is working till tomorrow. and either today or tomorrow they are planning on giving him a trach tube. This will help him regain his speech better, it will help the staff be able to clean out his lungs better, he will be able to be weaned off his vent. AND he might not have to be sedated for one of those. also chicks dig scars. so thats a bonus. even though he doesn't need one for mom to like him. and I qoute "He's still got it" said as she is patting his arm in the ICU! He is wearing feet orthotics to prevent his foot drop. I think this is all. thank you for the prayers! and for all the help with everything
Sept 7
news about my dad: according to my brother, fasting is like praying but on steroids! today has been a great day for my dad! so thank you for your prayers! they ARE helping! today he opened his eyes and focused on my mom ( for the last week whenever he would open his eyes, they would just roll all around) and when they came in to test his reflexs, he moved his big toe. Also when the nurse came in to take care of his oral health he didn't like it and moved his right arm half way to his mouth to stop her. This is great news! The respiratory therapist came in and didn't have to suction out his lungs and said they were sounding great, and they his blood work came back negative... I'm pretty sure that means he is not septic anymore! Thank you thank you thank you for the prayers! these may seem like small things, but they are truly steps in the right direction!
Sept 8
Dad is still stabilized, he is still in the ICU, however the new dr there decided that they wanted to wait a little bit before giving him a trach, so we will see what happens in the next couple of days! Thanks again for the prayers!
Sept 9
Dad news: today dad is still doing about the same! He opened his eyes a little bit more, and was looking around at the ceiling. He will probably be getting a trach tomorrow. The Dr decided that it was time. They are just waiting to for the OR dr to have time. please keep the prayers coming :))
Sept 11
update on the pops: He can officially be added to the trach club! he got one today! He is a little tired, so the machines are breathing for him today so he doesn't have to use his energy for that. His blood pressure is really stable so they got to removed his arterial line (i guess it measured his blood pressure??) and when the nurse was pulling off the tape from his arms ( poor guy) he reached one arm across his body about an inch from his other arm. He lifted his head and even mouthed the words "ow". Now he just as a normal blood pressure cuff. He is not sedated, but is pretty out of it still. He is improving a little more each day. I think he is already relieved that he doesn't have a vent going down his throat now. Thanks again for the prayers They are helping more than you know!
Sept 12
whats new with dad: Today when the Nurse was checking all reflexs he moved his feet. Thats great news. Also they are trying to move him to Utah Valley Specialty hospital, down by the riverwoods! They need to work things out with insurance first, but it's an extended care facility AND it's way closer to home! If he can be moved, then it will be hopefully on monday!
Sept 13
Dad update: This is Marie posting this this evening. I went up today and Randy has been very unresponsive for the last 2 days. Ever since they put his Trach in. The Dr's said sometimes when you're real sick it takes a lot longer for the anethesic to wear off. He is also having a low grade fevor that they don't know where it is coming from. The Dr. ordered another MRI of the lower spine and a cat scan today. They are trying to move him to an extended care ICU facility. The insurance should let us know by Monday, I hope. It is in the riverwoods, I think it's the same one Heidi Stay went to. They have rehab, and physical therapists, and all that stuff he will need in the future. He did move his right leg one time, just a little bit. which is great. He just sleeps all day.They haven't given him any sedatives for the last week, it's just his own bodies sickness that is sedating him. I appreciate all your prayers on his behalf. I can feel their power and comfort. Thanks to all you ward members who have helped Kati and I. To the coming home to a clean house to mowed lawn to cookies on the front steps, to a rototilled garden and filling in on my church calling and especially to Br Abbott and Ruder who are stepping up and filling in on all Randy's bishop jobs. Thanks, you are a great ward family and wonderful neighbors!
Sept 14
Nightly fatherly update: Dad was really tired today, so he didn't participate in his therapy! They are going to do another another spinal tap tomorrow. He is doing about the same as he normally is! He was given a blessing today, and during the blessing he opened his eyes, and he was moving more than normal! All good signs! Hopefully we get good news about him moving down here tomorrow!
Sept 15
Dad update: Our insurance has approved him to move up to provo, however he is currently not stable enough yet. He is less responsive than he has been. They did another spinal tap and are running 4 more tests on his spinal fluid to see if they can figure it all out. thank you for the prayers. they are felt and needed.
Sept 17
Daddio update: sorry for the lack of post yesterday! Not much is happening, he is still the same. They did take a chest x-ray yesterday and his lungs look clear! No more pneumonia! He is still unresponsive. We are still waiting for the tests to come back. The lymphoma test was a negative, as well as the west nile virus. That is all we can think of, sorry that not much has happened. thank you for the prayers and thoughts!
september 18th
Thursday, September 18th, 2014
So we’ve
already told everyone that Dad has what is called GBS, I’ll go into a little
more details about what this means and what his prognosis is.
All
cases of GBS are different, some are more mild and people experience just a
numbness and tingling in their hands and feet and others are more severe, like
our Dads where everything is affected including the muscles that help him
breathe, (this is why he is on a ventilator)
This has caused total paralysis.
The immune system attacks its own nervous system causing demylenation of
the myelin sheith, which is just a fancy way of saying when your brain tells
something to move, electrical impulses from your brain travel to that area of
your body through the neurons, myelin sheiths are the outside layer. So in a
nut shell because his are damaged at this time, when his brain says move,
nothing does.
Hope
that makes a little since, and if anyone understands this differently, feel
free to chime in. I may have explained
it a little wrong.
So
before they knew what he had, he was having difficulty breathing, one of his
lungs collapsed, and he was transferred from the med surg floor to the ICU and
placed on a ventilator. He had an oral
ventilator for about 1 week then they switched it to a trach, (in the neck) 5
days ago. While he was on the oral
ventilator they had him sedated because all the tubes go down his throat, and
as you can imagine caused a big gag reflex.
Oral Vents also can cause vocal cord damage so they don’t like them that
way if it looks like they’ll need the vent for long periods of time. During this time, dad was pretty sedated but
would open his eyes when you came in and told him you were there, the day
before he got the trach, he was squeezing hands once for yes and twice for no,
he would move his arms and legs just a little, so we were happy about that.
After
the trach was placed Dad has been pretty unresponsive ever since, when Physical
Therapy comes into work with him he can’t do much of what they ask him. He hasn’t even been able to open his eyes
much since then, and I mean maybe he’ll open them once a day for about 2 seconds,
and that is it, most of him movement is twitching limbs. I myself was worried that maybe he has had
some brain damage from the swelling that was on his brain.
Last
night out of frustration and lack of knowledge about what is going on I looked
into a GBS support group. Which I firmly
believe I was guided there by angels above! I commented on what my dad was
going through and went to bed really frustrated. The following morning I woke up to 7 people
who have had GBS or family members who have, who all told me that complete
paralysis was totally normal for them, including eyes and eyelids, most people
were in this phase for 2-3 weeks, this was such a relief for me! All said they were totally aware of what was
going on, and their family members thought they were in a coma, but they just
couldn’t move anything to let them know that they were there.
One
thing one women mentioned was how hot she was, she said, “He may be very
sensitive to heat. I was and still am. In order to sleep I have to have a fan
blowing directly on me. I remember that once I could let people know I was hot
and they started the fan along with cool wash clothes on my forehead it was
heaven!” Dad has been dripping in sweat
the last week or so, we thought he was fevering, so this morning mom went armed
to the hospital with a squirt bottle to spray him down, and placed wash clothes on his head. Ya go mom!
The other big thing was pain control, all of them stated how bad the
pain was, here’s what someone said about her pain, “One thing to know is that
pain management is so very important. I was in excruciating pain and couldn't
let anyone know. Please make sure you are advocating constantly for your dad to
make sure his pain is managed.” This was
such an awakening for me, Dad hasn’t been getting anything for pain since the
trach because they didn’t want him more “groggy” and wanted him to “Wake up”, His blood pressure rises during Physical
therapy and he grimaces when they move him,
What a blessing it is to know, so we can get him the pain medication he
has been needing.
Lastly
Dads case has been a little different than normal GBS, he has had an elevated
WBC ( white blood cell ) count which I guess isn’t normal with GBS, we now think that he has what is called Bickerstaff
Brainstem Encephalitis, I am not super familiar with it, but it is really
similar to GBS and recovery is similar, (months to years) depending on the
case, they are starting Plasma exchanges (plasma cleaning I guess, like dialysis)
over the next 5 days, then he will be transferred to a rehab facility in Provo where he's in for the long haul, relearning to do all the things that we take for granted on a daily basis.
Well
this is pretty much all, We have had wonderful friends, family and neighbors
who have kept us in their prayers, thank you so much, we have felt them!! I Truly
feel that your prayers have guided us find what we needed to do to help him!
Waking up this morning to all those messages brought tears to my eyes, what an answer to
prayers!! Thank you!!
Dad update - Tues Sept 16
As a a family, we decided to start a blog to keep all of our friends and family updated on what is going on with our wonderful dad, grandpa and husband, Randy Loveless.
He was diagnosed with Guillain-Barré syndrome (GBS) which is a disorder in which the body's immune system attacks part of the peripheral nervous system. He is currently in the ICU at St. Mark's Hospital.
Here's the latest information that Marie sent to Josh on his mission:
Here is the news on your dad. He is about the same except that now he has a trecheotomy, which means he has a hole in his neck to help him breath instead of a tube going down his throat. It is alot better because because now it doesn't have to go past his gag reflex. He looks a lot more comfortable. He can move his arms a little bit and today he even moved one of his feet while Doug and Ray were giving him a blessing. He is still very sleepy and maybe opens his eyes one time a day for about 5 secends, if we're lucky. They are trying to get the insurance to accept him at a long term intensive care facility that is located at the Riverwoods complex in Provo by the mouth of Provo canyon That would be so nice if that were to happen. It would be so nice not to have to drive up to S.L.C.in that freeway traffic. They said I should know by tomorrow, Monday. He had another cat scan and MRI and they said they looked ok. He is still running a low grade fever and that is not normal for GBS. So they are still looking for where it is coming from.
Thanks to everyone for all of your prayers and well-wishes. We appreciate all of the support.
-Ray Loveless
He was diagnosed with Guillain-Barré syndrome (GBS) which is a disorder in which the body's immune system attacks part of the peripheral nervous system. He is currently in the ICU at St. Mark's Hospital.
Here's the latest information that Marie sent to Josh on his mission:
Here is the news on your dad. He is about the same except that now he has a trecheotomy, which means he has a hole in his neck to help him breath instead of a tube going down his throat. It is alot better because because now it doesn't have to go past his gag reflex. He looks a lot more comfortable. He can move his arms a little bit and today he even moved one of his feet while Doug and Ray were giving him a blessing. He is still very sleepy and maybe opens his eyes one time a day for about 5 secends, if we're lucky. They are trying to get the insurance to accept him at a long term intensive care facility that is located at the Riverwoods complex in Provo by the mouth of Provo canyon That would be so nice if that were to happen. It would be so nice not to have to drive up to S.L.C.in that freeway traffic. They said I should know by tomorrow, Monday. He had another cat scan and MRI and they said they looked ok. He is still running a low grade fever and that is not normal for GBS. So they are still looking for where it is coming from.
Thanks to everyone for all of your prayers and well-wishes. We appreciate all of the support.
-Ray Loveless
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