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Maria's hospital course

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Posted 5/17/2012 7:56 AM (GMT -8)
Hello all,

I just wanted to post an update on Maria's surgery.  She is still in the ICU.  Today I was told that the nurse said her oxygen level is too low and they have her on oxygen.  If that doesn't help enough, they said they would put her back on the vent.

Since, they had to remove part of her diaphragm, I was thinking maybe it is too painful for her to breathe deeply enough to keep the levels up even though she is heavily sedated.  What do you all think?  Surgery was on Tuesday. 

Georgia.

Posted 5/17/2012 9:21 AM (GMT -8)
Georgia, I am sure they are pumping her full of pain meds, so I doubt that's the cause. When one is sedated during surgery, it sometimes takes awhile for the lungs to work properly. Is she a smoker? That would make it even more difficult. Are they putting her on breathing treatments with the incentive spirometer?

Here's hoping she doesn't have to go back on the vent! She needs to be reminded to breathe. This has been the case with me after all my surgeries. I'd find myself not breathing.

When you give the next update, just add it to this thread. ;)

Hugs,
Connie
Posted 5/17/2012 9:52 AM (GMT -8)
Hi Connie,

They have not been able to do any breathing treatments because she is so out of it and has not been fully awake.  She also has never smoked.  Hopefully, they can keep her off the vent.  My daughter thinks they need to ease up on the morphine.  When my mom had her gallbladder out they gave her morphine in the recovery room and she had respiratory distress.  They had to give her Narcan and then bag her.  Maybe it is just a matter of easing up on the drugs.  Don't know.  She had some high blood pressure due probably to pain, but they have stabilized that and they have been giving her insulin for her diabetes.

Georgia.

Posted 5/17/2012 10:58 AM (GMT -8)
Aly's Mom,

Thanks for the update. 

Have they put the vent back on?  Some of our posters have had this experience.  The vent is difficult for the patient, but NOT breathing isn't a great idea either!  I'm hoping it would only be for a short time.

What are the docs telling you,

Best,

Carol

Posted 5/17/2012 2:38 PM (GMT -8)
Thanks MamaLama,

My daughter just called from the hospital.  The doctor said all her blood work is okay.  She thinks they took her off the morphine and put her on something else.  When she saw her she did not even have an oxygen mask, so she must be breathing better.  They said she should be up and moving by now.  I am thinking too much morphine. 

Georgia.

Posted 5/17/2012 2:46 PM (GMT -8)
Georgia, you're probably right. And she should get up and moving as soon as safe to do. Great news that she remains off the vent, though, and everything is clear.

Hugs,
Connie
Posted 5/17/2012 6:27 PM (GMT -8)
Just got an update on Maria.  Apparently, she is breathing better.  But, her amonia is elevated so they gave her lactulose.  Though I don't know for sure, I didn't think this was normally a problem for her.  Do you think it is probably the trauma of the surgery?  They didn't remove that much of her liver but maybe just enough to cause this. 

Georgia.

Posted 5/17/2012 7:09 PM (GMT -8)
Yes, it could be from surgical trauma. It could be just temporary.

Very good that's she's breathing better!

Hugs,
Connie
Posted 5/18/2012 8:50 AM (GMT -8)
Here is the situation:  The lactulose has not done anything, no BM's.  But, then she has not been able to eat much.  What then, can they do to get rid of the excess ammonia?  I think that is the biggest problem at the moment. 

Georgia.

P.S.  This liver disease is so hideous.  If only people could experience a little bit of it and return to normal, maybe the lucky ones would never live how they were living.  I think the problem is that, like smoking, for those who get it by drinking, it takes such a long time for serious disease to set in and gives them a false sense of security.  Maria got hers from hep C so I am speaking about the "luckier ones," those who just have to change their lifestyle.

Posted 5/18/2012 9:54 AM (GMT -8)
Georgia, I agree with that last part.  When my husband was first diagnosed with Cirrhosis, we figured it was because of drinking, but after his transplant eval, we found out he had a genetic disorder called Hemochromatosis.  Because of this disorder, he was predisposed to getting liver disease and many other problems.  I hate to say if we only knew before but it is the truth.  If we would have known about the disorder, drinking could have been stopped and we may not be waiting for a new liver now.

Amy

Posted 5/19/2012 9:27 AM (GMT -8)
Hello everyone,

We are desperately looking for hope. Maria is still confused, although the nurse said her ammonia is down. She is having trouble breathing again and will be reintubated. Her kidneys also are not doing great. Is there hope for survival? We are all so devastated. It seemed in the begnning that she was going to do well.
Posted 5/19/2012 10:04 AM (GMT -8)
I think it maybe time to expect the worst and pray for the best. Such a sad time are there relatives or friends who should come to the hospital?

Hugs

Carol
Posted 5/19/2012 10:15 AM (GMT -8)
MamaLama,

My daugher and her husband (Maria's son), her other son and his dad have been at the hospital nonstop. They have a hotel room right by the hospital. They are not a large family. Her granddaughter just had her baby on Tuesday, the same day as Maria's surgery. I am sure she would like to be there too but it would not be very practical. She really looked forward to the baby. I guess I will try to be hopeful that recovery is still possible. It all seemed so positive.

Georgia.
Posted 5/19/2012 10:16 AM (GMT -8)
Also, is a transplant absolutely impossible at this point?  Georgia.
Posted 5/19/2012 10:35 AM (GMT -8)
Alysmom,

I'm not a doctor...so I can't say about transplant. They will do a transplant when the MELD is high AND other medical conditions are under control. They want a healthy heart, healthy kidneys, and someone who is likely to remain alcohol and drug free the rest of their life.

Basically they triage the organs so that those who get transplants are the most likely to live on.  These centers have great stats...like 95%+ live at least a year, and most of them make it 5 years....so the record is good, because they are so careful at the beginning.

This seems like a good question for her docs. Let us know what they say.

Carol

Posted 5/21/2012 7:01 AM (GMT -8)
Hello all,

Well, Maria has been back on the ventilator for a couple of days. Yesterday they drained a lot of fluid from her chest. She does try to fight the ventilator, so they had to restrain her wrists. Her ammonia was down a little. Her kidney function is good. Her vital signs have been okay except, of course, breathing before the ventilator. They are hoping that that will be discontinued soon. They did a CT scan of her head and it was fine. She is, of course, sedated. One of the doctors spoke with my dughter yesterday and said that transplanting a liver is much easier than operating on a cirrhotic liver and they would rather do that. If the pathology shows no spread of the tumor, I still think a transplant should be attempted. They told my daughter no transplant, but I was not there and I would have asked "what circumstances in the future would allow for transplant."

There is so much more hope with a transplant because you know when you wake up you will have a brand new chance of life without the miseries of cirrhosis. In this case, hopefully she will have more life, but she will still not feel very well. Tomorrow she will have been in the ICU for one week. It was supposed to be maximum two days.

When her other son arrived at the hospital he walked in and she was on a ventilator. No one notified him that this was being done. It was done during the night. He was very upset about this lack of communication. He did not expect it.

Georgia.
Posted 5/21/2012 7:47 AM (GMT -8)
Georgia, thanks for the update. Believe me, after waking up in recovery after my transplant with the breathing tube down my throat, I understand why people fight it. It felt like I was drowning. Once I got my fingers moving, I was signaling like crazy for them to take it out, which they did. So I really hope that she is able to get off the vent.

Liver transplant is an assault to the system and there are often complications afterwards. I've had quite a few myself. In fact, since transplant 6 mos. ago, I've not felt good even one day. It's either pain or healing problems or my body chemistry is out of whack. The post-transplant meds have their own set of side effects, requiring that they be changed on a regular basis until everything evens out.

And I was basically very healthy, except for my liver, prior to transplant. My liver never decompensated, so I didn't have jaundice or HE or the things normally associated with end-stage liver disease. I had/have no diabetes, heart problems, kidney issues, etc.

So maybe you can see how a patient needs to be healthy enough to survive the surgery and make a good recovery.

Hugs,
Connie
Posted 5/22/2012 1:21 PM (GMT -8)
Hello all,

I finally have something better to post.  Maria is off the ventilator and drank some Lactulose on her own, didn't like it, though.  She can't talk because of her throat and asked for a pad and pencil.  Hopefully, in the next couple of days she will get to go to a regular room and I can see her.

Hope everyone is doing okay.

Georgia.

Posted 5/22/2012 3:56 PM (GMT -8)
Let's hope that she can remain off the vent. The longer one is on it, the more difficult to wean off of it. I can imagine how sore her throat is, with them inserting and taking out the breathing tube so many times. Popsicles are great for the sore throat. If really bad, she should ask for some numbing medication.

It sounds like her mental function is good. Have them try mixing the Lactulose with juice.

Hugs,
Connie
Posted 5/22/2012 4:01 PM (GMT -8)
Thanks Connie.  Alyson, said that Maria asked her husband for something and she said "you ain't worth a bag of peanuts," which was so funny because she is back to herself.  The doctor told Alyson that he could see no reason why she would not make it.  I guess that because of the seriousness of her liver disease these complications were just unavoidable and hopefully the worst is over.

Georgia.

Posted 5/28/2012 8:05 AM (GMT -8)
Hello all,

Maria was transferred to a rehab facility now for physical therapy to increase her strength. I finally did see her yesterday and she looks pretty well. She is still very weak. She took her Lactulose while I was there. My daughter called her later to see how she was and she told my daughter that after she goes home she may not have to take Lactulose. This scared my daughter and she told her "oh, yes you will take your Lactulose" and she replied "well, we will see." She just doesn't like the constant trips to the bathroom. Also, because her her weakness right now she has asked for adult diapers. I know this is unpleasant.

I called the Texas Transplant Institute last weak with questions about their transplant program. They said they don't rule out transplant with liver cancer after the cancer has been treated. So, maybe a transplant is still possible later on. Maria did say yesterday that she has a bundle branch block in her heart. Does anyone know if that is something that would rule out a transplant? There were about 10 of us visiting her at one time, probably too many. However, it will not usually be that way. Some were people who had not seen her since she entered the hospital for surgery, and she needed to see them.

Georgia.
Posted 5/28/2012 11:49 AM (GMT -8)
Hi, Georgia! So glad to hear that Maria has made it to rehab! A BBB is a defect in the heart's electrical system, causing arrhythmia. I can't really say whether that would interfere with her having a transplant in the future, but I'm sure that would be addressed if she gets into a pre-transplant evaluation or maybe before that.

Hugs,
Connie
Posted 6/4/2012 5:25 PM (GMT -8)
Well, Maria is going back to University Hospital tonight.  At the rehab place they just are not keeping her ammonia levels down.  She says she is scared.  I just feel so very badly for her.  Her only hope is really a transplant.  Even though at University they don't transplant in her circumstances, the other transplant center here may.  What do you think about checking into that (I am assuming the cancer has not metastazied because no one has ever said that it has).  The surgeon said he was able to remove it.  My daughter made a big fuss with everyone at rehab and spoke with the hospital to get this transfer back to the hospital going.  She was just so worried about the possibility of coma.  I do believe this is just too much for the rehab place.  She was transferred there on the 2nd day after she left the ICU.  I think that was way too soon for that.  She is not that stable yet.

I just wish there was some hope here.  Can anyone give me some?

Georgia.

 

Posted 6/4/2012 6:45 PM (GMT -8)
I tend to agree with you that she went to rehab too soon. Certainly, if they are not able to get her ammonia down, she needs to go back to the hospital. They will give it to her by enema if need be.

As for hope....she's been quite ill but is still with us. That tells me she is a fighter and not ready to give up.

Hugs,
Connie
Posted 6/4/2012 7:35 PM (GMT -8)
Georgia, the thing at most places about liver tumors is that they not be more than 5cm all total...or some specific number like that.

And at our center they said something about not being in the blood vessels. But they rebuilt one for Connie, so I guess that depends on the center also.

Has she got other underlying medical problems that make them think she would not be a good candidate? They like the folks who are allocated organs to be the ones who will likely make it after...

Thinking about your family tonight.

Keep us up to date on what is going on.

Carol
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