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Crazy 24 hours (UPDATE 11/14 pm see bottom post)

UncleBuddy
Posts: 714
Joined: Aug 2013

Yesterday I told you that my brother went for his chemo and was having problems breathing. My sis noticed it when she brought him from the car to the office. The doctor did a CT scan and they found several thoracic embloi, so he was admitted and put on blood thinners. When we left him last night, they had him on oxygen, lovenox and he looked okay.

Fast forward to this morning. We get to the hospital and they are in the process of transporting my brother out of the hospital to another hospital, one we aren't too crazy about. No one called us to tell us, although they say they tried but we must have been on our way. They had already made the plans to take him and do emergency surgery to remove the clots, The doctor explained that the clots were interfering with his heart function. He has a partial loss of function from his chemo 13 years ago. so this was lowering his blood pressure to a dangerous level. I understand that they had to act now, but they should have called us when he was switched to ICU during the night. I felt like we had no choice in the matter. My sister tried persuading the dr to send him to another hospital, but he said he already had the plans in the works and this was an urgent matter. Am I wrong for being angry? My poor brother looked scared. I felt if there was a change in his health during the night, they should have called me. Am I expecting too much?

Lin

Thanks everyone. My brother is stable (I called several times last night and once this morning). I'm heading over there with dad in a little while. It's a 45 minute drive each way. Hopefully the breathing tube will be out today and he feels better shortly. He was still asleep last night, but he's awake this morning. I'm sure he'll be glad to see us.

His medicare starts December 1st. I think we need to look into other options for him closer to home (for dad). This is draining him. Hopefully also the supplemental coverage will be better than the crap insurance he has now.

UPDATE 11/13 pm We just got back from the hospital. He is still in ICU and on the breathing machine. They said he will probably come off the machine this aftrnoon. We saw a bag of blood hanging above him. Geesh, don't they tell you any of this? My sister said she would have donated her blood. Anyway, I have a call into his internist and he is going to call me this afternoon to discuss these miserable chain of events.

Lovekitties's picture
Lovekitties
Posts: 2998
Joined: Jan 2010

I certainly agree that family should have been called when your brother was moved to ICU.

Not only that but every effort should have been made to contact you about change of care plans.

You have every right to be upset about how this has played out, particularly since your brother is unable to be his own advocate.

I pray that all will go well with the surgery, and that you can soon get him transferred to the hospital of choice.

Marie who loves kitties

lp1964's picture
lp1964
Posts: 912
Joined: Jun 2013

...have called you. I just wish they can resolve this problem. You guys need a break so you can resume treatment and I pray that you get that break.

You are an amazing family.

Laz

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

You would have thought that they would have called family when he went into ICU.

I hope he gets this blood clot problem figured out soonest, I feel so bad for your brother being scared and not sure what is going on without you there to help him know what is happening.

Winter Marie

tanstaafl's picture
tanstaafl
Posts: 1014
Joined: Oct 2010

They probably have had some anger problems, or potentially other regulatory issues,  with notifications after 10 pm or midnight...  I have been in corporate offices where someone was called internationally in the middle of the night and the caller was never, ever forgiven - permanent bad blood.

I can see one more piece of hospital paperwork coming, "Do Not Call between" fill in the blank, say 10pm -  7 am, or, 1am-6am.

UncleBuddy
Posts: 714
Joined: Aug 2013

I walked in today with a copy of my brother's healthcare proxy and told them under no conditions are they to do anything without calling me. I think I may have gotten them nervous because I already got a call from the hospital asking a million and one questions. Let's see what happens next...

traci43's picture
traci43
Posts: 448
Joined: Jul 2007

Glad you tookcare of things for your brother.  Hopefully the hospital has taken notice and will continue to consult you.  Especially glad to hear that he's doing better.  That's the best news in all of this.  Hope it continues and he's home soon. Traci

UncleBuddy
Posts: 714
Joined: Aug 2013

The nurses have been great, so far. I've been in touch with them several times a day (of course I have to call them). When I spoke to the nurses this evening, they said as soon as they wean him off the heart meds he will leave ICU and go to a room.

Lin

lp1964's picture
lp1964
Posts: 912
Joined: Jun 2013

and it is tough to imagine now, but in a few days everything is gonna be easier.

Just hang in there!

Laz

UncleBuddy
Posts: 714
Joined: Aug 2013

After seeing him awake and alert this afternoon, I feel so much better. I know, baby steps... :)

Lin

Trubrit's picture
Trubrit
Posts: 1709
Joined: Jan 2013

When I had blood for low red blood count, I was given two different peoples donations. My sister-in-law was horrified, and said that she would have gladly donated her blood (same blood type). I was told that they would not do that in anycase, as it has to pass many tests. So, I don't think you could have done anything to help there (I could be wrong of course). 

I am glad of your latest update. May he continue to recover and speedily so that he came go home.

You all continue in my thoughts and prayers. 

UncleBuddy
Posts: 714
Joined: Aug 2013

You may be right about the blood. He's doing well. They took him off the ventilator and he is stable. I am in a better place tonight knowing he's comfortable. :)

wolfen's picture
wolfen
Posts: 1213
Joined: Apr 2009

So glad to hear that your brother is doing better & off the vent.

Don't get me started on hospitals! Unforgivable that he was moved to ICU without your knowledge. You really have to advocate.

Luv,

Wolfen

Scubadan (not verified)

It takes less than an hour to give blood.  It takes about an hour, no more than two for a type, cross, screen, and match. However the donor can only give one pint.  If more than that is required, anonymus donor blood would be required.  Anonymus donor blood is very strictly screened and tested to be disease free.  It is safe.  Dan

UncleBuddy
Posts: 714
Joined: Aug 2013

That makes me feel better. We all angry at how we were kep out of the loop and all this happened without notifying us. It's especially troublesome because my brother is intellectually disabled.

Lin

Chelsea71
Posts: 1170
Joined: Sep 2012

That does sound like a crazy twist to the situation.  A nice reminder to me that I am not a doctor.  I guess pulmonary embolisms can be trickier than I realized.  The poor guy.  I hope things turn around for him soon.  You should have been contacted when they moved him to ICU.  Somebody screwed up. 

What about you?  Are you raising young kids on top of helping your brother?  I work in a Day Support Program for individuals who have developmental disabilities.  I work closely with parents and family members, so I have some idea of how difficult this situation must be for you.  Emphasis on the word "some".  

Chelsea

UncleBuddy
Posts: 714
Joined: Aug 2013

I had no idea that it could be that dangerous. When he was originally diagnosed, he threw a small clot, so they put him on Lovenox. This time around, they decided to put him on aspirin from the start. They thought that would be enough. Unfortunately, it wasn't. My brother has an area of the heart that doesn't function due to chemo he had 13 years ago for NHL. So his heart didn't work to full capacity before he threw these clots. Then when he threw the clots, it cut off function of more of the heart, dropping his blood pressure very low. This is when they moved him to ICU. No call from the hospital to tell us he was in danger. After quite some time and trying different meds, it got so low they knew he needed immediate surgery so they made plans to transport him to another hospital (all without even telling us he was in danger). I walked into his room to find an empty bed with his name removed from the door. You can imagine what went through my mind!!! They told us he was transferred to ICU. When we got there we saw him on the gurney. I thought they had just taken him to ICU and were dropping him off. He was on his way out the door. I thought my sister was going to do some damage. It's a good thing I was there to calm her down. She was yelling at the poor nurse who was helping my brother. I told her to wait for the doctor who was on the phone making my brother's arrangements. He came over to us and explained the chain of events but didn't give a rat's %^$ how we felt. He just said it had to be done asap and the hospital we wanted to send him to wouldn't have enough time to get together a team to do this in time. If they had called earlier and told us he was going to ICU and what they were thinking, maybe it could have been done, but we were never given that chance. Anyway, the surgery is done, he is doing well so far. I thank God for watching over him and I thank all of you and my dear friends and family for all your prayers. It's a miracle that he survived. We all keep saying that he has 9 lives. He refuses to believe that this is going to get him. He keeps telling us he isn't going anywhere. Sometimes I think he may be right. He beat NHL, maybe he can beat this too. Who know? It's in God's hands now! :)

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Lin,

So sorry about your brother.  Sometimes I wonder if these hospital people are robots and have no feelings at all for what the family is going through.  I'll keep him in my prayers.

Cynthia

UncleBuddy
Posts: 714
Joined: Aug 2013

My brother is 49 and he is the baby of the family. He has all big sisters, lol. My children are all grown and I am a grandma of one precious little girl. She is the light of my life. When I have a bad day I take out a picture of her and it makes my day better. I'm married to the same man for over 30 years and he's very patient with me. I've had to put my life on hold to help my brother and dad, so he's a keeper. Uncle Buddy is doing better than I thought. The vent is out and he's alert. I am sure he's annoyed that he can't watch wrestling. Don't forget, no TV in ICU. I hope for all the nurses' sakes they put him in a room with a TV soon. Haha!

Thanks so much for your support. Coming to this site has been the best thing I did since my brother got sick again. I admire each and every one of you, both patients and caretakers. CANCER SUCKS!

UncleBuddy
Posts: 714
Joined: Aug 2013

Vent is out. His vitals are stable. He's complaining about the food. Sounds good to me. He looks so much better than yesterday. He does have a TV in ICU, so he's not really that unhappy. He's a little uncomfortable. He is one lucky guy!

saussureainvolucrata
Posts: 52
Joined: May 2013

Oh jeez. I just read this whole thread from the beginning till the end. What a rollercoaster. I hope your brother feels more comfortable soon. I am just so glad that the worst is over. 

UncleBuddy
Posts: 714
Joined: Aug 2013

He's feeling better, just a little sore. He is already griping about the food. Haha! He is a character! Hopefully he'll be transferred out of ICU soon and to his own room. I'd like to see him out of this hospital asap. It doesn't have a very good reputation anymore.

annalexandria's picture
annalexandria
Posts: 2324
Joined: Oct 2011

I'm so sorry you and your family are going through all this!  It's very upsetting to feel like the hospital is not being sensitive to our needs.  It seems like they often act without thinking too much about the family when it comes to emergency situations, but they still should have contacted you when they moved your brother.  That seems like basic courtesy, if nothing else.

But it sounds like he's doing well from your last update.  Very glad to hear that.  I guess that's the main thing, now that all the dust has settled.  Give him a hug from us!

AA

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