Scared & Worried...My Dads In ICU!!!

Long story short.  They immediately intubated him and put him on the Ventilator.  Said he has pneumonia..but the doctors or nurses are not being helpful!!!   They took a sputum sample on Monday when he got admitted.  Still they are saying nothing is growing in the culture.  They did a CT scan on Saturday, Jan 7, 2009.  Well, the Pulmonologist told us (my mother and me) today that they saw an area in the right lower lung and they wanted to do a Bronchoscopy to get some of the fluid out and Biopsy some of the lung tissue.  Now, we are going to wait AGAIN to find out what that could be.  In the meantime, my dad is on the Ventilator (I know nothing about a Ventilator exept that it helps you breath and will sometimes breath for you).  The Ventilator was set at 35% on Tuesday and Wednesday.  They tried to wean him off the Ventilator and was unsuccessful!  They increased his Vent settings to 55% after that!  Thursday-Saturday, his Vent settings were 45% and today (Sunday) they were increased to 70% (but I wonder if they increased it that high due to the bronchoscopy).  The doctors or nurses aren't telling us anything except that he's really sick and will try to wean him off the ventilator soon.  His Vital signs are within normal limits, except he has been running a fever of around 100axillary, and today his fever was 102.3axillary.  His blood sugar has been running high...in the 230's.  He is diabetic.  His labs are ok, exept his white blood cell count is on the high side.  I'm pretty sure from my studying that an increase in temp. and white blood cell count can signal infection.  But the doctors and nurses do not know what kind of infection he has...and this is worrying me to death! They say he keeps producing more and more mucous in his lungs.

It just hurts so much to see all these tubes in my dad.  They are giving him Diprovan, IV to help sedate him.  Earlier today when it was time for visitations, he was actually semi-awake...but of course couldn't talk.  He just looked pitiful!!!  He was trying to say something to us but no words would come out. He raised his eyebrows like he was going to cry but couldn't.  I couldn't help it. I lost it and started crying.  I had been holding the tears in while visiting him just in case he could hear me (The nurses will tell me he can hear but of course cannot communicate back even though he's sedated).  He has got restless at times, but they got his hands tied down to keep him from pulling the tubes out. 

I'm sorry this was so long and seems as though I'm rambling.  I haven't got much sleep...about 2-4 hours a night for the past week.  I cry all the time.  No one seems to understand the pain I'm going through. On top of that I have to start back to work next week.  I'm trying so hard to be strong and positive for my mom, in front of her...but will just cry away.  I guess the biggest worry is just not knowing...seeing him in pain.  I actually feel kinda guilty for sending him to the ER...when all they do is put tubes down his lungs, for him to be semi-awake and know what's going on at times.  I can't handle this!  I have never had anyone close to me sick in the hospital or die.  (I'm 27 and my dad is 60), so this may be a big reason why it's so hard for me to cope.

Today I sat in his office and just cried.  I don't feel like I can leave my mom in her emotional state. She doesn't have any disabilities but she is just so upset about my dad that's it's making her sick. My fiancee (whom I live with)  has been a big support and keeps telling my mom and me that my dad will be ok.  I don't live with my parents...but I have been spending the night with my mom to make sure she gets the sleep she needs and is eating.   

I don't know what kind of advice I'm looking for here.  A shoulder to cry on...a place to vent....explanations....similiar stories if anyone has gone through this experience...a pat on the back...someone to tell me everything will be ok.  Above all...for anyone reading this.  Thank you for listening. 

Do not, do not, blame yourself for this situation. You saved your father's life by getting him to the hospital. I feel quite certain the man would not be here today had you not done that. I don't know how much you know about peumonia, but untreated it can kill people, so you do understand you did the right thing. There are many differnt types of peumonia. Its a very serious illness. I feel quite certain since they did the bronch, once they get the results of the biopsy back, then they will know for sure what kind of infection has set in and will know what sort of antibiotics to put him on to get rid of the infection. You must understand that all antibiotics are not equal, meaning they only work on different strains of infection. They each have their own infection that they work on the best. I know a bit about this because I am under the care of a pulmonary dr, I have also had many rounds of peumonia. This will get turned around, its just going to take time.

In the meantime, try to take the best care of yourself that you possibly can. I will suggest that you not go in and see your Dad if you cannot hold it together. Honey, he is terrified himself, its very scary for a patient to wake up and find themselves on a vent ok. If you are visibly upset, he will get upset, then things like pulse and BP can rise and he just does not need that on top of whats going on. I spent 6 grueling months at my brothers bedside being told for weeks he wasn't going to live. He is my only brother and we are very close. It was gut wrenching seeing the things they did, seeing what he endured, he was in a coma and I am so glad he was not awake to remember any of it. He sustained a traumatic brain injury, bleeds on both sides of the brain. I did my crying in the chapel as I prayed.

Its very good that his vitals are stable. That is a very positive sign. Of course he will run a temp w//infection being present. this is normal. The same with his sugar, my brothers was off the scale, he too is diabetic. But, his vitals were not stable and it took alot of hard work to get him out of the danger area. My brother had numerous unsuccessful attempts of being weaned from the vent. Just don't give up, it will happen when he is ready. I know we expect answers now, especially when its our family, but we have to let the drs and nurses do their job and it is being done with God's guidance. I don't know if you are spiritual or not, I found alot of comfort in the chapel at the hospital.

Try to be as patient as you can with the nurses and drs. Making a nurse mad or disgruntled is not good, this is the person that you want giving your Dad the very best care possible. I assume that you and your Mom by now pretty much know when his dr does rounds and being there at that time is when you need to be present and ask your questions.

Please keep us informed as to how your Dad is progressing, I will say a prayer for you and your family. Hugs, Susie

I did take the advice of one poster and contacted the CCU social worker.  Honestly, she was not much help.  She did come in last Monday, Jan 12 when he was admitted and asked my mother and me tons of questions.  I called her today (from CCU)  and all she said was that she was sorry that she hadn't looked at my dads chart yet...she seemed very busy. She told me that she just gives weekly talks with family members.  She told us the best way to get in touch with her is just to call the hospitals CCU and leave a message to speak with her.  That's all she said.  I guess I was thinking she would have more answers, support, or whatever.  Oh well.

I have decided to take off from work for the rest of this week.  My immediate supervisor is totally understanding...she is going through something similair with her mother at this time.  The Director of Nursing (I'm an LPN) told me I need to file for FMLA.  I do not know if I would qualify for this since I'm not the one actually taking care of my dad.  I know that emotionally I would be no good at work right now and just decided I needed some time off.  My work is harsh when it comes to people calling in.  I don't understand why I would need to file for FMLA if I have over 90 hours of sick time built up at my work and a doctors excuse saying I could return to work Monday.  I guess I will just have to go to human resources at my job tomorrow and see what they say..and fill out the sick time.  I've been employed at this place for 3 years and have only called in like, maybe 5 times, so it's not like I call in that much.  I just don't think I need to be caring for patients right now in the state of mind I'm in.  I can't focus right now.  All I do is cry!  All I want to do is visit my dad.  I don't want to go to work and miss the oppurtunity to visit my dad.  He is awake and aware of what is going on right now...the nurses say he is building up a tolerance to the Diprovan he is receiving and is maxed out on anything else he can receive.  Well, he's semi-awake, but he is aware of what is going on.  I didn't cry when I visited him today.  I just talked to him calmly and told him what was going on and that he was going to get better (even though I'm not sure this is true).  I did cry after I left the room but tried to stay calm and strong while in the room. 

Post Edited (raindrop) : 1/19/2009 10:32:07 PM (GMT-7)

Thank you so much for taking the time to post and let us know what is going on with your Dad. Keep the faith that he will get better. You must pull up some positive vibes honey, for yourself and your Mom.

Since his bronch was done on the weekend it may take a little longer getting the results back. I know its awful when its the weekend at hospitals. It just seems like it takes forever to get info back. Its going to be very interesting to see what the results of this test shows. Once they get that biopsy back, then they will know for sure exactly what type of infection they are messing with. If your Dad has underlying lung issues that no one was aware of, this slows down his progress somewhat, but he will get there. I am just so glad you sent him to ER.

I have COPD and I am on oxygen 24/7. Depending on what the outcome is with your Dad's testing results, if he has COPD he may get put on oxygen, but thats premature at this point. I have an older sister right now that is battling peumonia. She had a relapse of it and of course thats not good. But she pushed herself too far and tried to go back to work too soon. She refused being hospitalized, I told her daughter thing s to watch for and said call 911 no matter what her Mother said. My sister is terribly hardheaded and never been sick much in her life. She has little faith in drs and it makes it really hard on ker kids when she does get sick. She is now developing the lung problems me & another sister have been battling.

I hope that things go well with HR tomorrow. I am thinking you can use FMLA, I know when its an illness it does include the immediate family, such as mother, father or siblings. Its really up to the employer to grant the FMLA.

Keep that chin up, you have made it this far and know that we are all praying for you and the family. Hugs.....Susie

I'm in the anger stage right now...where I feel like I want a different opinion....a different Pulmonologist who can treat him and HOPEFULLY give him a diagnosis.  I don't know how to go about this, but I had his Primary Care Doctor (or whoever's oncall for him) paged so I'm just waiting on him to call me back.  My dad never saw a Pulmonologist before...so this Pulmonologist he's seeing now actually works at the hospital he's in.  I don't even know what to say to his PCP when he calls back...just that I want a second opinion from a different Pulmonologist?  My mother and I don't feel like we're getting answers.  He's been on the Vent for 11 days and they don't have any answers.  It seems as though they would know SOMETHING or have a diagnosis besides "He's getting over his Pneumonia and his lungs are more clear, but now the fluid is in his chest and he's too weak to come off the Ventilator.  But when he does come off the Ventilator he will probably need a Trach.  Oh, and by the way he has a mass on top of his right kidney but that can't be addressed until after he gets well...which could take months." 

I'm sorry if I sound angry and out of sorts.  I just feel so helpless.  Maybe (as one of the posters above) suggested...I do need to see a counselor of some sort.  My mom needs one worse than me right now, but I could never get her to go!  Thanks for listening. 

My dad (sadly to say) is still on the Vent.  His settings are now up to 55%.  Still no actual diagnosis(except that the doctors strongly believe he has an underlying lung disease...a CT scan that revealed a mass on his left kidney...but this can't be addressed until after or if he gets off the vent)  All cultures from sputum, blood work, and urine have showed up negative, and they have discontinued his Antibiotics since they couldn't find any bacteria.  They did say they would continue to do cultures until or if they find anything.  He is keeping a fever...ranging from 100-102.9...which they are treating with tylenol. His blood sugars have been running high...about 200-260 which they are treating with a sliding scale insulin...Lantus I believe.  He is on a feeding of Pulmocare at 30cc/hr and he is FINALLY starting to have regular bowel movements.  (Where is Dr. House when you need him?  Sorry, I had to throw in a little joke there.  I love watching that show). 

My mother did get a second opinion from a different Pulmonologist, and neither of us liked what we heard.  He talked to my mother over the phone.  Asked her a ton of questions about my dad...how long has he smoked (he started in his 20's and just stopped smoking 4 years ago...he is 60 now), when he walks, how long does it take for him to get out of breath... etc.  He didn't actually see my dad I don't think, but he was looking through his charts.  He told my mom that if it was him he would just take my dad off the Vent and let him go peacefully.  He said it sounds like he has emphysema and lung scarring and he wouldn't put him through all that with the tracheostomy, etc.  My mom remained calm on the phone with this other doctor and asked to speak back with his nurse.  After the nurse got back on the phone, my mom told her that she didn't want this doctor taking over his case at all.  She wanted his old Pulmonologist back, the one that actually hasn't given up on him yet!  After she got off the phone with this "mean" doctor, she burst into tears and said she just can't make that call right now. We both cried for the rest of our Saturday after this doctors opinion.

It's not as if he's in a coma or anything.  His vent setting is at 55%, not 100%...and when his Diprovan (sedative) is running low, he knows exactly what's going on.  When asked if he wanted to fight to get better, he nodded his head yes.  I just can't believe that other doctor said that.  Maybe he was just being truthful with his opinion...but his opinion hurt deeply.  We are not ready to give up on my father yet!!!

Tonight, at 5:30pm...my uncles preacher came in to pray for him.  They would only let 2 at a time go in to the CCU, so it was the preacher and my mother.  I don't know what was prayed but when the preacher came out he told me that my dad did want to go to heaven.  This of course made me cry a little.  (They had decreased his Diprovan for a short time per my mothers request so he could see the preacher).  My dad is, by no means, a religious man (or at least openly religious).  But, my mother told me the #1 thing on his last years New Resolutions List was to get closer with God.  When I came in to see him, he was wide awake.  I unstrapped his restraints (I was close by of course) and kept telling him he has to get better.  When asked if he was going to fight to get better, he nodded his head.  I hugged him and cried on his belly while he hugged me as tight as he could.  I saw a tear coming down from his eye and this broke my heart!  I tried to keep my tears in but seeing him awake like that just upset me...he couldn't talk but was trying to.  He is too weak to try and write on a clip board.  When I asked him if he wanted to write, he shook his head no.  He did nod yes when I asked him if he wanted to get better.  I don't think he wants to give up.  I believe he still has some fight left left in him!!!  He's as stubborn as I am!  I know if it was me laying there, with a Ventilator, I would want the doctors and nurses to do everything they could to save my life.  I don't think he's ready to give up just yet...and the only thing that doctor with the second opinion made me feel like is that we were just making him suffer!!! 

After we left, my mother and I requested that they increase the Diprovan so he could get some rest.  It makes me feel better to see that he's resting when I visit rather than being awake and agitated (but he didn't seem agitated with our visit today, thank goodness).  He did keep trying to throw his leg over the bed as if to say, "I'm ready to get outta here". 

I actually do plan on going to work tomorrow.  It's going to be very, very hard on me but I think it will help keep my mind busier!  I just hope I don't start busting out crying while at work.  I work 2nd shift, and my mom works 1st shift, so I told her to keep me updated by leaving me messages on my cell. 

And to the poster that thought they offended me by suggesting I seek a counselor or physcologist.  You didn't offend me at all!!!  I think anyone who's going through what I'm going through now should most definitely do that!  I just have to find one that my insurance will accept, and find time between work, visiting my dad at the hospital, etc.  I've actually thought about that.  I guess my #1 concern is my dad and I want to be there "in case anything happens" and for support.  I plan on visiting him at noon before going to work at 3pm. 

Thank you again for all of your encouragement, kind words, sharing your similiar experiences, and advice!!! 

Post Edited (raindrop) : 1/25/2009 10:49:09 PM (GMT-7)

Post Edited (Pamela Neckpain) : 1/27/2009 2:47:03 PM (GMT-7)

I didn't get to visit my dad today because I woke up too late!  I did call the nurses several times and my mother kept me updated.  He is still on the Vent at present, but earlier today (about 1:30pm) they changed the settings on the Vent to Bipap mode, and the nurse told me he was breathing on his own and was doing great!!!  I went to work in the greatest mood ever.  Then, I called my mom after visiting hours (6:00pm during my break at work) and she told me they had to restart him on the Vent because he was having trouble breathing on his own....but at least he was breathing on his own for a few hours!  The vent setting is now at 40%, and the night nurse told me they are planning on decreasing his sedation medications and extubating him tomorrow IF the test the respiratory therapist do turn out to be positive.  The nurse told me that the resperatory therapist have to do 2 test, and I was driving in my car while talking to him so I don't remember what those two test were.  Anyway, he said if those test came back ok, then they were planning to extubate him.  I'm excited but also worried.  What if they extubate him and he has trouble?  I know he's in CCU and they can immediately intubate him if need be...but I just hope those test that the respiratory therapist do come back positive!  The nurse also told me that his vital signs were stable, and his O2 saturation at the moment I was talking to the him (about an hour ago) was 100%!!! He also told me if my dad keeps doing as well as he's doing, he should have no trouble...but I'm trying to NOT get my hopes up too high.  I know this is a day by day process.  I just have to keep praying and hope for the best.

My mother forgot to mention to the pulmonologist that my dad had a pulmonary function test the cardiologist had ordered (because of a new med the cardiologist was thinking about giving him and required this test first)  about 2-3 months before Christmas...and my mother nor father never received the results of that test (my dad did switch cardiologist though shortly after because my mother didn't like the way the cardiologist was treating my dad).  The pulmonologist was like, "That would've been helpful to know!"  My mom was and still is a nervous wreck right now and just forgot to mention this.  Anyway...my mother nor my father had ever received the results of that Pulmonary Function Test that was done before Christmas!!!  The test revealed that he had Moderate COPD per his Pulmonologist in CCU!!!  So..my thinking is, is if he had known he had COPD, would he even be in the CCU now?  I guess we will never know.  My nursing supervisor told me that my mother needs to talk with an attorney to see if we could have a case.  I'm not sure we will go that route.  We just want my father to get better.  It does make me angry though that these results were never revealed to us sooner...my nursing supervisor was like, "he could have been treated with steroids and not be in the condition he's in now."  So, that has got me thinking. 

Anyway, I think I'm going to get off here and try to get some sleep so tomorrow I won't miss my dads 12:30 visitation.  Maybe when I see him tomorrow he won't have tubes down his throat and just a Bipap in place.  I know, I'm probably being too optimistic and will just get my hopes up.  To me, it's better to be a little pessimistic so that you can expect the worse and be prepared rather than optimistic and get your hopes up. 

Again, thank you all for your kind words and encouragement!  I couldn't wait to to come home and post on this board and see the responses.  I will try to give an update tomorrow before or after work. Thanks again!!!