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And the plot thickens


stand4hope

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Don has a very bad infection - fever 103. They don't know if the steroids or chemo or cancer is causing it. They did the bronch today and are slamming him with two different antibiotics and did blood cultures.

The pulmonologist said he couldn't get very far into the lower left lobe because there's too much blockage there. He did get samples to biopsy off the top edge of the left lower lobe. He also got biopsies from the upper right. He said the lymph nodes aren't a problem. He washed him out in both lungs (lavaged (sp?). He said he couldn't rule out cancer in the right lung, or that there is cancer back in the left lung. He said he couldn't "see" cancer, but the biopsies would tell. Right after the bronch is when the fever shot up and all hell broke loose.

His EEG showed areas of abnormalities and weakness in the brain, but no definite evidence of seizures. It did say, however, that basically the areas of weakness would indicate the potential for partial seizure activity. His new neurologist is putting him on an anti-convulsive medication and will examine him further when he feels better and is more alert.

Because of the high glucose (207), the onc would like to cut down on the decadron, but wanted to wait & consult with the neurologist because of the brain issues.

He fell down in the bathroom this morning and claims to have slipped on the wet floor. He told me about it, and that two people came in to help him. He apparently bribed them somehow to not report it because he didn't want them to put up the rails on the bed. I reported it to the nurse myself. As far as who helped him up and didn't report it, an investigation is under way. He's ok from the fall, I think. He scraped his arm, though.

The pulmonologist said that his breathing is a lot worse than Don said it was. I'm like - DUH!!!! Does anybody even write down what I'm telling them. I wasn't there for the first part of the neurologists interview with Don, so I missed the big, "I'm not having any trouble breathing" lie. His sats were 86-88 after the bronch. He is now on 6 liters of oxygen.

I came home to get a couple hours sleep and will call to decide whether to go back up. He's beginning to be a bit difficult with the nurses. They won't let him out of bed because he's so weak. He's mad about the rails being up on the bed, and he also keeps asking them to take out the i.v. The machine kept beeping and he insists he isn't putting up with that all night.

Because of the anesthesia, he kept drifting back off to sleep and I had to go through the same thing every time he woke up: "The rails have to stay up and the i.v. has to stay in!!"

What a day! Trish: I'm still practicing that line. I've got it down pat and ready to use.

Sorry this is so long. I certainly don't expect you guys to keep responding to these posts, but I know a lot of you want me to keep you updated, so that's my update for today. I'm off to take my nap.

Love and hugs to everybody,

Peggy

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Dear, dear, dear Peggy,

I cannot even IMAGINE the day you have had. I am so glad Don is where he is and the pros can tend to him. This is definitely out of your hands.

I wil for sure be praying soon that things calm down for you and Don is feeling happier AND better. I am so glad you keep us updated. When we don't hear we tend to worry. Of course in this case, hearing causes worry too :( .

Sure hope you CAN get some hours of sleep and are holding up. What a stressful ride you are on right now. I will be keeping you close in thought and prayer, Peggy. Wish there was more to do for you.

(((Peggy))),

Kasey

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Peggy,

Thank you for caring about us and for taking time to update us.

We continue all fervent prayer..........and are sending love and support.

I am so glad he is getting all these tests and now they have started the antibiotics. I bet if they can just get one thing calmed down he will get progressivly better...........rather like reverse domino effect.

Hugs, dear friend, and lots of love. Know we are with you.

Pat and Brian

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Peggy, I am so sad to read you guys are going through continuing tough times. I know exactly what you mean regarding Don telling the doc his breathing was "fine"!!! We've gone through similar scenarios with Mum, so glad to know we're not alone on that one. Mum has told her palliative doc she is "pretty good really, and not in much pain". Sooooooooooooooo not true.

Hoping and praying that Don is improving when you next see him.

Jana

xx

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Peggy, I am so sad to read you guys are going through continuing tough times. I know exactly what you mean regarding Don telling the doc his breathing was "fine"!!! We've gone through similar scenarios with Mum, so glad to know we're not alone on that one. Mum has told her palliative doc she is "pretty good really, and not in much pain". Sooooooooooooooo not true.

Hoping and praying that Don is improving when you next see him.

Jana

xx

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Peggy,

Thank you for keeping us updated. Poor Don, he is so upset about giving up some of his independece and this is very frustrating to him. :( I can understand that. But he really has to take it easy and listen to the docs and nurses as they know what is best for him.

I pray something breaks in his favor and he starts to have a better outlook.

You sound completely exhausted. I wish I could do something to take some of this very heavy load off of you.

I hope you have support from family and friends at this time and you are not going through all of this yourself. You need love ones to lean on.

Of course we are always here, but it is frustrating that we can only give you cyber hugs. ((((Peggy)))

You certainly can use some real ones.

Sending prayers to Don, and you for strength.

Poor guy, he is going through too much. I really pray tomorrow will be a better day for both of you.

You are so strong Peggy and I know this is so hard to see the man you love going through all of this. Plus all you have gone through with your son. You are a pillar of strength and this helps them to cope.

Please know that I am thinking of both of you and sending you healing vibes.

Maryanne

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Peggy!

Wow! What a ride you are both having. I'm truly amazed at the similarities in our husbands - or maybe it's just a 'man thing' (oops, I hear some responses coming to this).

If rails were up, Jim scooted to the bottom of the bed where the rails didn't reach. I went home for a while one night and he was supposed to call for bathroom help. Nope. Apparently, he unplugged the bed, the phone, everything on the wall to get his IV pump unplugged so he could wobble with it to the bathroom! All he told me the next day was that he kinda got in trouble for unplugging alot of things. Wasn't going to deter him. Said he would do it again if he had to the next time he needed to go!

The beeping IV. Been there. But, most of all, I'm thinking how your stress level must be so high, worrying about him and worrying when he threatens to find his clothes and take a hike.

I think I finally figured out that it was more bark than bite and Don really does realize that he is in the best place to get the care he needs.

Take deep breaths, get a few winks of sleep, and my thoughts are with you during this difficult time. Thanks for taking the time to let us know how you are doing.

Lynne

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Oh Peggy -- what a tough time you and Don are having. Don sounds like my Dad when we go to a doctor's appt. He'll often tell the doctor that things are ok and I have to chime in and give the true information which is really needed for the best decisions. My father desperately wants to make it to my daughter's wedding this summer (involves a flight) but so far, he says "no" to a wheelchair in the airport.... So I do understand where you are with Don.

Get your rest when you can or you won't be of any good to anyone.

Please know my prayers and thoughts remain with you --- and keep us updated.

Gail p-m

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Peggy,

I am sure Don is fed up with all of the "hospital stuff". Heck, I know I was after my surgery. No sleep, no independence and no decent food. It has to be extremely hard on you to watch him and know that he has to stay there to get well.

103 temp is fairly high, but not unheard of after a bronchoscopy. Just make sure they continue the heavy antibiotics.

Now for you. You have to sleep and shower to make yourself feel like being there and being alert enough to handle all that is on your shoulders at this time. Take those deep breaths and try to relax. At least some of the time you have to take some for yourself.

We all love you and happy that you are keeping us informed. Let us know how Don is as this saga continues.

Nina

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Peggy...your message could easily be a rerun of some experiences I had with Dennis. I also had to smile reading Nancy's post about Mike coming out from the end of the bed to avoid the rails, as I've been there and seen that, too! Your Don must be a real charmer to have "bribed" the nurses into silence regarding his fall! I hope he wasn't hurt from the fall, as it sounds as if you don't need anymore bad things right now! Peggy, just know that Don is in the right place to get all the help he needs. I'm sure the antibiotics will take care of the infection and then you can sort out everything else that's going on. Like others have said, right now you must TAKE CARE OF PEGGY!!! I wish I was there to give you some help. I will keep thinking of you and Don and keep sending prayers for both of you! Thanks for keeping us posted.

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I am so sorry Don is having such a rough time right now. Looks like a lot of us know how husbands are in hospitals. It can certainly get difficult. Ken was very disoriented after he had a broncoscopy when they moved him to IC after his lobectomy. He had to be on forced oxy for a couple of days which was no treat. They said it was just one step away from a ventilator. Scary. I really hope you can get so much needed rest and that Don will get better soon. Praying for both of you.

Karen H

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Oh Peggy,

I missed this last night. I'm praying that you find Don much better today. Why do they all like to deny they are having problems. Mike did the same thing with his breathing a while back... I kept saying that it wasn't as good and he said " I know how I feel and it is fine". He didn't admit it until he couldn't walk 5 steps without gasping.. That's when we found out about the pneumonitis. Praying and praying that things are better today.

Love,

Sue

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Peggy,

I am so sorry you and Don are having such a rotten time. I want the universe to give the two of you a break. How frustrating it must be when the medical folks don't give your observations and opinions the weight they deserve - they may know the disease, but you know the man! And when you're trying to hard to help the man you love get the best care he can that kind of disregard is more than frustrating.

Your news has humbled me tonight and I don't think I can ever feel sorry for myself getting a "stable" monthly report again. Taking the energy out of my pity-party and sending it to you and Don. Wish there was something nice I could do for you.

Leslie

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Today was a bit better. Don's fever was normal this morning, however, it did spike back up to 102.4 early afternoon, but came back down late in the day. His O2 is holding at about 90-92 with 3 liters of oxygen, and he was more coherent and in a better mood. The two antibiotics are being continued and we are still waiting for culture/biopsy reports. The onc told him this morning that his lungs are going to get better because the infection is causing this and not cancer. He blames the steroids and/or chemo for wiping out his immune system.

I think the problems he had over the weekend weren't brain related. I think it's his spine. In fact, I KNOW it's his spine and would bet my next paycheck on it. I believe this because of something he did today when he was sitting on the side of the bed and it was a deja vu of Saturday's episode on the tractor. I'll spare you the details until I talk to the onc & neuro about it. It was too late in the day when I realized it and their offices were closed, but their partners will both be visiting him tomorrow, so I'm going to ask about it.

I realize he still has the abnormal EEG and the brain could still be causing this problem, but regardless of the source, he has lost muscle control in his back/spine. I'm so convinced I'm right that I will be SHOCKED if the doctors don't agree. I won't mind admitting at all that I'm wrong if they say so, but I just bet I'm not. In fact, physical therapy is coming in the morning and I'm going to tell them, too, so they can recreate the scenario and confirm it, or not.

On a sad note, he asked the onc, "Do you want to buy a motorcycle?" :cry::cry: It broke my heart! He told me after the onc left that he couldn't trust himself now to ever ride it again.

Love and hugs,

Peggy

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Oh, and P.S. Yes, our son is being Superman. He's taking care of all the yard work, dogs, etc. He even took one of the dogs to the vet for us yesterday. He is healthy and has been a God-send to us right now, although he is struggling to cope with his dad being sick.

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Dearest Peggy,

I'm sorry but I am just now seeing this post. It has been a busy few days here and with today being my hubby's birthday I havent been on here much. You are really going through it !! Poor Don wants his indepensence so badly and it is so hard to take away from him when you love him and only want to see him smile and be well.

You're family remains and always will in my prayers my friend.

God Bless you all,

Jane

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