RSL in hospital

[RSL's better half]

Well, I see that FSM's title is "god," in the lower case, of course. Glad to hear you've sent Robert a little personal "something."

Yay, Forumites! I just got back from the P.O. box and there were about a dozen cards, a letter from an attorney's office - wishing Robert well - whew! - and a couple post cards (one from Europe, one from Singapore). Bless you, bless you, bless you!

Lunch break is over. It's back to the hospital again. Need to hear results from today's chest xray and ct scan. Will post what I learn in the "updates" thread tonight.

 

[Mr. Skinny]

Susan, if they do perform a traech to make it easier to suction, try not to be upset when they suction him. With my sister, it used to make her body kinda lock up/convulse for a few seconds and it was disconcerting to observe, but she would breathe much easier afterward.

Hope they are doing a good job with pressure relief to prevent bedsores, etc. Is he being moved/rolled regularly? I don't want to worry you, but he's been essentially motionless for two weeks now.

Having been through a lot of this, I've got a lot of empathy for how tough this is.

My best to you.

 

[Myriad]

Thank you so much for these updates, Susan.

As you talk about what Robert is going through and how it's better than the doctors' expectations, I can't help also thinking about all those unknown others who do no better than expected, or worse. I hope you don't mind if I divert some of my prayers that way. (I'm pretty sure Robert's won't be in any way diluted in the process.)

Respectfully,
Myriad

 

[RSL's better half]

Hope they are doing a good job with pressure relief to prevent bedsores, etc. Is he being moved/rolled regularly? I don't want to worry you, but he's been essentially motionless for two weeks now.

How could I leave out a report on the "purple throne?"

Since about the 2nd or 3rd day, Robert has been in a bed made for bariatric patients - obese people. The mattress fills with air in different sections at intervals, transferring pressure to different parts of his body. It also adjusts to many different positions. It's really cool. Our favorite nurse says he'd like to have one of these beds at home - he'd never get out of it! But, while all that is wonderful, the best part of Robert being in this bed is that the mattress and bumpers are purple! His favorite color. One technician was passing through right after they put him in it and she said "Oh! So they gave you the purple throne!"

 

[ile]

How could I leave out a report on the "purple throne?"

Since about the 2nd or 3rd day, Robert has been in a bed made for bariatric patients - obese people. The mattress fills with air in different sections at intervals, transferring pressure to different parts of his body. It also adjusts to many different positions. It's really cool. Our favorite nurse says he'd like to have one of these beds at home - he'd never get out of it! But, while all that is wonderful, the best part of Robert being in this bed is that the mattress and bumpers are purple! His favorite color. One technician was passing through right after they put him in it and she said "Oh! So they gave you the purple throne!"

I'm glad they are using a mattress designed to avoid bedsores. Actually, the concept is not restricted to heavy patients, and it can be used for the general bedridden patient population.

And I am also very glad that it comes across that you are in very good terms with nurses and attendants, which is very useful for recovery (yes, I am rooting for that!)

Best wishes from the other side of the pond.

ile

 

[Amapola]

Susan, that's great you are going to insist on talking to all the doctors involved and get a lot of your questions answered.

This in no way replaces that, but I asked my husband about some of those things. He works in the ER at a hospital so he is familiar with the drugs and problems and so on. He says if there were a reaction to Ativan you would most likely see a rash everywhere. He suggests that rash is associated with the bp cuff, just from having it on so much and sweating under it, but that of course the doctor will know. He also says there is vasovagal response that can sometimes cause the blood pressure to drop after a bm. So, that is sort of natural, and not necessarily a really bad thing. But again, my husband stresses to check with the doctors, because they are actually there.

It's great to hear about his foot moving like that. That's a very hopeful sign, it seems to me.

Thanks so much for the updates. Try and get some rest if you can! I know it must be hard to rest.

 

[borealys]

Robert is so lucky to have you advocating for him at every turn. In my experience, the combination of being willing to make a stink and being willing to sincerely thank people who take time to talk to you and check in regularly will get you the best care.

I hope if I ever have a medical crisis, I'll have someone like you on my side.

 

[JoeTheJuggler]

Susan, it's easy for hospital staff to get so busy they don't spend the time they need on things that might be important to you and Robert. You have every right to be the squeaky wheel that gets the grease.

I'm sure others here can give you advice and info on the specific medical stuff, but I encourage you to be a demanding customer! If there's anything that doesn't seem right or hasn't been explained to your satisfaction, by all means you should follow up on it. I hope the patient's advocate helps you in that regard.

Hang in there!

 

[TiaH]

I second that motion! If the staff knew how important you guys are to the rest of us out here, they would be hovering 24 hours a day! Thanks again for the updates!

 

[The Mutha]

So sorry to hear about Robert's incident, but very happy to hear that he's improving! Modern Science is a wonderful thing as is the power of the human spirit in all it's forms. The Dolly and I are thinking about the entire family and our best wishes for a speedy recovery.

 

[Flo]

Thanks for the updates, Susan, and bravo for your efforts.

Florence

 

[rjh01]

My only tip is be polite at all times. The worse the situation the more polite you should be. As other people have said you need to work out what you want and then go out and do whatever it takes to get it.

 

[RSL's better half]

Thanks for the updates, Susan, and bravo for your efforts.

Florence

Thanks, Flo. I think I've been in shock or something for the last couple weeks. I've been more or less a victim. The me I know is back now. I do what I have to do.

Thanks for the beautiful card and the invite. We will keep it in mind if we ever get to travel.

 

[RSL's better half]

My only tip is be polite at all times. The worse the situation the more polite you should be. As other people have said you need to work out what you want and then go out and do whatever it takes to get it.

Good advice, rj. Patience and politeness was all I was about yesterday. Well, I also did a little "poor me" with his primary dr. "You can understand my frustration . . ." I said at one point. His whole demeanor changed as he said, "I'm sure you also understand mine . . ." I said, "I do." He is trying to coordinate Robert's care, but most of the decisions are out of his hands, you know? Decisions are being made by several other doctors, and they take a while to inform him.

 

[Locknar]

Hi, Everyone.

For those who want an update, I'm about to give one to you. To those who are offended by this thread but are still reading it, quick! Turn down the volume and turn your head away from the screen! Sheesh.

I am offended...that someone would be offended (my small...very small...almost non-existant attempt at humor).

Small victories are the name of the game.... Hang in there!!

 

[ObscureReferenceMan]

I just wanted to say thank you for the updates, Susan. We appreciate them.

But, if you ever get to the point where you are getting overwhelmed, and have to (gasp!) miss a day in your updating us, that's OK. As they say, you have bigger fish to fry. Take care of yourself, and that big lug first. And update us when you can. Thanks, again!!!

Take care.

 

[Tanstaafl]

I'll pile on as well with thanks for the updates, Susan.

Sounds like Robert is steadily working his way back!

 

[HawaiiBigSis]

Susan --

From your latest update (Robert shoving you out and responding to other requests), it sounds like he's very clearly doing great! And without the tube in his throat, I bet he'd be communicating much better. But I do understand your hesitation about authorizing holes to be punched where holes aren't normally...

I understand wanting to be with him every waking minute, but you also need to take care of yourself.

But good for you for spending a whole day trying to talk to all the doctors. It never ceases to amaze me how little coordination there is when there's a bevy of physicians all working on one patient. I just don't understand why they can't talk to each other, or read the charts, or something.

And let me add that I truly appreciate your updates. I'm sure they feel a little bit cathartic to you (at least I think they would if I were in your position), and we sympathize with everything you're going through. I, at least, wish I could take some of your worry away from you.

 

[Macoy]

Hi, RSL's better half, I'd just like to say that you remind me of my sister - she won't put up with listening to crap, and I should know.

 

[alfaniner]

If he still has the tube and is unable to talk, but gets more control of his motor functions, Dasher is a program that requires only minimal mouse control.