Bendy-Friendies V.4 ... Drinks-A-Plenty with a Side Order of Tasty Food!!!

[Tess]

As long as you all want me to post the updates here, I will. I know not everyone is on facebook, so you wouldn't know what was going on any other way.

Bob is now the proud owner of a trach and a PEG feeding tube in the stomach. Although he approved both these surgeries, he was not particularly happy yesterday. He has entered the bored to tears portion of a prolonged hospital stay and his impatience and stubbornness are showing themselves. He is insistent that he can eat and drink and is furious when Kristin and I won't bring him what he wants. We did get permission from the ICU staff to bring him his cell phone so he could text rather than write and he asked to play a game of Yahtzee which they also permitted. But he quickly tired with that minimal activity. The man hasn't had a feeding in a tube since noon on Friday so I imagine he is famished! I hope today brings him some more progress and less disappointment. Meanwhile, Kristin and I are continuing to try to work and go to the hospital. It will be easier once they start some kind of therapy with him, as it will give him something else to do. For security reasons we can't leave his book reader or phone or iPod with him so he is reduced to hours of watching the History Channel and reading. I am hoping he can get out of ICU soon, but his BP has to be stabilized and his little bout of arrhythmia yesterday cannot return! Keep us in your thoughts, friendies.

Boredom is the absolute worst when you are hospitalized! Thanks so much for continuing to post updates--we are thinking of you and continuing to pray for a full, speedy recovery!

 

[PNO4TE]

Since I taught a great majority of the day yesterday Kristin and I told the ICU staff that we would stop in at 9:00 p.m. just to tell Bob good night and see how his day went. By the way, in case you didn't know.... the new law states that anyone, at any time, can enter any area of the hospital that is not restricted due to sanitary reasons (not the term I want to use but my brain is mush these days!) but I have been observing the old ICU hours of visitation from 8-8. There was a darned good reason for those hours and just because some lawmaker in DC decided to tack on a ridiculously wordy, un-necessarily broad amendment to the health care bill I am not going to second guess the hospital staff! Anyway....

Because we went in so late we discovered that Bob was being moved out of ICU. In fact, we got to help move him. Who ever thought that moving patients at 10:30 p.m. was good for anyone involved?!?!? I can understand surgeries late at night due to OR availability and surgeon and staff schedules, but moving?? His bed in ICU was not needed and the one on the 4th floor was standing empty too. He was exhausted from all the hubbub surrounding the move and the PT that he received on Monday. By the time they got him moved and explained the new monitoring system that he has to help with he was in a nasty mood and let everyone anywhere near him know it. Kristin and I left after we knew he was situated and I got home about 11:15.

There is no change in his breathing and he did not pass the swallow test yesterday. That is not a surprise to me because he has a trach in there! I wish the Speech Therapist would hold off a few days until they can stabilize his secretions and put the speaking tube into the trach. That would allow him to close it off and swallow more normally. Right now he is trying to swallow past a balloon. He is disheartened because every day he thinks he will pass the test and begin to eat. I am at the point of saying I just want them to tell him what I was told last Friday: He probably won't be able to eat solid food for months. Getting his hopes dashed every day is taking its toll. If I see her today I may discuss that with her.

Now that I have gone on and on, I do have to say that being out of ICU is certainly a step in the right direction. We are praying that he can continue to improve and stay there. The last place we want to see him go is back to ICU!

Again, my friends... thanks for letting me ramble my thoughts here. I know you all keep saying that's what you are here for, but sometimes I feel like I am monopolizing the thread.

I hope everyone in the path of our next gift from Mother Nature will stay safe. I think our immediate area will miss the majority of this monster storm, but most of you are going to have to deal with it.

 

[oybolshoi]

Elin, that is wonderful news! I'm so pleased for you all! And you ramble as much as you need to my friend!

Since I taught a great majority of the day yesterday Kristin and I told the ICU staff that we would stop in at 9:00 p.m. just to tell Bob good night and see how his day went. By the way, in case you didn't know.... the new law states that anyone, at any time, can enter any area of the hospital that is not restricted due to sanitary reasons (not the term I want to use but my brain is mush these days!) but I have been observing the old ICU hours of visitation from 8-8. There was a darned good reason for those hours and just because some lawmaker in DC decided to tack on a ridiculously wordy, un-necessarily broad amendment to the health care bill I am not going to second guess the hospital staff! Anyway....

Because we went in so late we discovered that Bob was being moved out of ICU. In fact, we got to help move him. Who ever thought that moving patients at 10:30 p.m. was good for anyone involved?!?!? I can understand surgeries late at night due to OR availability and surgeon and staff schedules, but moving?? His bed in ICU was not needed and the one on the 4th floor was standing empty too. He was exhausted from all the hubbub surrounding the move and the PT that he received on Monday. By the time they got him moved and explained the new monitoring system that he has to help with he was in a nasty mood and let everyone anywhere near him know it. Kristin and I left after we knew he was situated and I got home about 11:15.

There is no change in his breathing and he did not pass the swallow test yesterday. That is not a surprise to me because he has a trach in there! I wish the Speech Therapist would hold off a few days until they can stabilize his secretions and put the speaking tube into the trach. That would allow him to close it off and swallow more normally. Right now he is trying to swallow past a balloon. He is disheartened because every day he thinks he will pass the test and begin to eat. I am at the point of saying I just want them to tell him what I was told last Friday: He probably won't be able to eat solid food for months. Getting his hopes dashed every day is taking its toll. If I see her today I may discuss that with her.

Now that I have gone on and on, I do have to say that being out of ICU is certainly a step in the right direction. We are praying that he can continue to improve and stay there. The last place we want to see him go is back to ICU!

Again, my friends... thanks for letting me ramble my thoughts here. I know you all keep saying that's what you are here for, but sometimes I feel like I am monopolizing the thread.

I hope everyone in the path of our next gift from Mother Nature will stay safe. I think our immediate area will miss the majority of this monster storm, but most of you are going to have to deal with it.

 

[Tess]

Rambling is good Elin! Hospitals are crazy and things are definitely done at odd hours of the day. Patient comfort is usually not a consideration when it comes to bed changes and the like.

I think you are right, Bob should be aware that he may not have solid foods for quite some time. The dejection he must feel is horrid--BTDT. You can't deal with issues unless you are aware of them.

I can totally relate to the inability to eat solid food and the frustration associated with being NPO. I have had two separate bowel surgeries that required an NG tube. Both times I was unable to have anything beyond ice chips for several days and thereafter for several more only soda. After both surgeries I was not allowed anything soft for seven days or so and nothing solid until 10! I was absolutely starving! Every day it was the same thing from the doctor: "Well, maybe tomorrow we'll take out the tube". If they had simply told me that I had to be NPO for 7 days, I would have dealt with it rather than having my hopes dashed from days 3 through 7.

Like Bob, I had a huge list of things I was going to chow as soon as I was able. Unfortunately, when I could eat solids I couldn't get more than a bite or two down without feeling queasy or full.

It sounds as if Bob is making good progress! Prayers continue for a full and speedy recovery!

 

[RachelTori]

Elin, We're so glad that Bob is making progress -- keep those ramblings coming!!

ITA that they should be honest with Bob -- that has to be so disheartening to get your hopes up and then have them dashed every day.

Continued prayers for your family.

 

[hmgray95]

Since I taught a great majority of the day yesterday Kristin and I told the ICU staff that we would stop in at 9:00 p.m. just to tell Bob good night and see how his day went. By the way, in case you didn't know.... the new law states that anyone, at any time, can enter any area of the hospital that is not restricted due to sanitary reasons (not the term I want to use but my brain is mush these days!) but I have been observing the old ICU hours of visitation from 8-8. There was a darned good reason for those hours and just because some lawmaker in DC decided to tack on a ridiculously wordy, un-necessarily broad amendment to the health care bill I am not going to second guess the hospital staff! Anyway....

Because we went in so late we discovered that Bob was being moved out of ICU. In fact, we got to help move him. Who ever thought that moving patients at 10:30 p.m. was good for anyone involved?!?!? I can understand surgeries late at night due to OR availability and surgeon and staff schedules, but moving?? His bed in ICU was not needed and the one on the 4th floor was standing empty too. He was exhausted from all the hubbub surrounding the move and the PT that he received on Monday. By the time they got him moved and explained the new monitoring system that he has to help with he was in a nasty mood and let everyone anywhere near him know it. Kristin and I left after we knew he was situated and I got home about 11:15.

There is no change in his breathing and he did not pass the swallow test yesterday. That is not a surprise to me because he has a trach in there! I wish the Speech Therapist would hold off a few days until they can stabilize his secretions and put the speaking tube into the trach. That would allow him to close it off and swallow more normally. Right now he is trying to swallow past a balloon. He is disheartened because every day he thinks he will pass the test and begin to eat. I am at the point of saying I just want them to tell him what I was told last Friday: He probably won't be able to eat solid food for months. Getting his hopes dashed every day is taking its toll. If I see her today I may discuss that with her.

Now that I have gone on and on, I do have to say that being out of ICU is certainly a step in the right direction. We are praying that he can continue to improve and stay there. The last place we want to see him go is back to ICU!

Again, my friends... thanks for letting me ramble my thoughts here. I know you all keep saying that's what you are here for, but sometimes I feel like I am monopolizing the thread.

I hope everyone in the path of our next gift from Mother Nature will stay safe. I think our immediate area will miss the majority of this monster storm, but most of you are going to have to deal with it.

Elin, it's wonderful that he's been moved out of ICU! I hope that the speech therapist agrees with you and tells Bob the truth about the solid food....for one, it will be much better if he knows what he's dealing with and won't keep getting his hopes up, and two, it sounds like Bob is a determined fellow, and would use that news to inspire him to prove her wrong!

For all of you in the path of the Storm of Doom, I hope you all stay safe and warm!

 

[jeminni]

Elin,

My thoughts and prayers are with you and your family during this time. I hope Bob continues improving every day.

 

[PNO4TE]

A very quick update: Bob will be moved to an extended acute care facility as early as tomorrow. It is in Richmond, which is an hour away from us. It is part of the Kindred Hospitals family and comes highly recommended. It is still hard to deal with even knowing it is the best place for him to go to begin his long road to recovery.

 

[Tink rules]

Elin.. sending lots of love and hugs for you and Bob... Hope things go easily for you.... Please also remember to take some time to take care of yourself too...

 

[TigerKat]

A very quick update: Bob will be moved to an extended acute care facility as early as tomorrow. It is in Richmond, which is an hour away from us. It is part of the Kindred Hospitals family and comes highly recommended. It is still hard to deal with even knowing it is the best place for him to go to begin his long road to recovery.

Prayers continue, sending love and hugs too!

Hoping everyone s staying safe and warm.

 

[Tess]

A very quick update: Bob will be moved to an extended acute care facility as early as tomorrow. It is in Richmond, which is an hour away from us. It is part of the Kindred Hospitals family and comes highly recommended. It is still hard to deal with even knowing it is the best place for him to go to begin his long road to recovery.

ECF is the best location for PT/OT/ST and more attention from the staff. My step-Dad had a stroke back in the early 90s and his release from ECF was fairly quick (within 5-6 weeks) after he was transferred for PT/OT/ST. Milt had no functionality of his left side and was severely speech impaired. The therapy folks wouldn't take his crap when he told them he wasn't doing therapy, etc. (he was a very stubborn man) and forced him to comply--which was necessary to his recovery. When he was released, Milt was nearly fully self-sufficient and only needed assistance at times because he used a cane.

ECF is really a good option and much better than the hospital setting for post-stroke therapy. Look at it this way, it is another step in the right direction on the road to full recovery and it means that medically he is doing well!

 

[cbg1027]

Elin, it's good to hear that some of the news is good. I know it's awful having a loved one in the hospital for an extended period of time.

I learned during the ordeal with my mom that there is no such thing as rest in a hospital - for the patient or their family. So it doesn't surprise me they would move Bob at 10:30pm.

I feel your pain. We're here for you guys!

 

[PNO4TE]

After speaking to the nursing and support staff for 48 hours about what Kristin and I perceived as a decline in Bob's condition, I fought for him last night at the hospital and they called in an MSET nurse to re-evaluate him. His blood gas levels were lower than they had been 4 days ago so the decision was made to put him back on the ventilator because of what was found. In some ways this is good since that means they now know I am a squeaky wheel and am not going to let them move him when we think there are still medical issues that need to be addressed. In other ways it is not good because it means he has to be back on the ventilator. They did not move him back into ICU last night, though. Hopefully that is because it was not deemed necessary.

 

[Tess]

After speaking to the nursing and support staff for 48 hours about what Kristin and I perceived as a decline in Bob's condition, I fought for him last night at the hospital and they called in an MSET nurse to re-evaluate him. His blood gas levels were lower than they had been 4 days ago so the decision was made to put him back on the ventilator because of what was found. In some ways this is good since that means they now know I am a squeaky wheel and am not going to let them move him when we think there are still medical issues that need to be addressed. In other ways it is not good because it means he has to be back on the ventilator. They did not move him back into ICU last night, though. Hopefully that is because it was not deemed necessary.

Great job advocating for your husband! Stroke recovery is a roller coaster and I'm sorry you can't get off the ride. Continued thoughts and prayers. . .

 

[RachelTori]

Great job advocating for your husband! Stroke recovery is a roller coaster and I'm sorry you can't get off the ride. Continued thoughts and prayers. . .

Well said, Tess!


Keeping Bob, Elin, Kathrin & Kristin in our thoughts and prayers.

 

[cbg1027]

After speaking to the nursing and support staff for 48 hours about what Kristin and I perceived as a decline in Bob's condition, I fought for him last night at the hospital and they called in an MSET nurse to re-evaluate him. His blood gas levels were lower than they had been 4 days ago so the decision was made to put him back on the ventilator because of what was found. In some ways this is good since that means they now know I am a squeaky wheel and am not going to let them move him when we think there are still medical issues that need to be addressed. In other ways it is not good because it means he has to be back on the ventilator. They did not move him back into ICU last night, though. Hopefully that is because it was not deemed necessary.

Good job watching that Elin.

Not to be a downer, but another thing I discovered about hospital care is that you, the care giver, have to be completely on top of things regarding the patient. You can not count on on the staff to be completely aware of what is going on (I don't think it's their fault....budget cuts equals more more patients per nurse and doctor). I kept a log of what medications my mom was getting, her doses, when she took them, etc so I could stay on top of when she needed them.

Stay strong!

 

[oybolshoi]

For those of you looking for a little break, I updated the blog this morning with our beer dinner from last week ...

come take a read if you have a chance and thanks if you do!

Beer beer beer beer beer!

 

[cbg1027]

For those of you looking for a little break, I updated the blog this morning with our beer dinner from last week ...

come take a read if you have a chance and thanks if you do!

Beer beer beer beer beer!

Not that I dislike any of your reviews Brenda, but come on.....I'm waiting on baited breath here for Robuchon Part 2!!!!!

 

[PNO4TE]

A very quick update for this morning. I spent the entire day with Bob yesterday! He was on the vent all day, after having been on and off the day before (a planned schedule) and he was much stronger and able to talk through his trach a bit. We read and watched some TV and he was generally in better spirits than he has been for a few days. We are going to watch at least part of the Super Bowl together tonight, but I will be with him for a few hours this morning and afternoon first.

We are still waiting on insurance approval for the move to the hospital in Richmond. Then we will begin the next step in his recovery. Keep thinking of us. The good thoughts and prayers are much appreciated.

 

[PNO4TE]

Oh yeah... in case you wondered who we would be cheering for: