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

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raindrop
Regular Member


Date Joined Jan 2009
Total Posts : 24
   Posted 1/18/2009 11:22 PM (GMT -7)   
I am a nervous wreck right now.  My dad is in CCU.  I sent him out to the ER on Monday, Jan 12,2009 due to labored breathing and it sounded as though he had fluid in his lungs. 
 
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!!! mad   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. 

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/18/2009 11:41 PM (GMT -7)   
Dear Raindrop,
I'm so sorry for all you're going through. Watching someone so close as a parent who's very ill is scary and can make you feel so alone. I've lost both my parents, but I'm much older than you.

We're not doctors here. This is the chronic pain forum of healing well, but still you can get some support, but one thing I'd encourage you to do is ask for the hospital social worker to work with you on your Dad's case. You may have to request this through the nurses or doctor, and your father may have to sign permission to have them talk with you, but they can help you understand what may be happening with your father, and provide some real support. They can also help you as a family, or refer you to resources that can. I think having that person there who can talk with doctors and interpret information for you can be invaluable. If the doctors or nurses give you a hard time, call the hospital inpatient social work department (there may be a social worker for CCU) and tell them your father is a patient there and you'd like some help. Again, he may need to give permission, but hopefully he wiil.

You may also find additional support on the anxiety or depression forums that are part of Healing Well. You can keep posting here, but there are many sections of the forum and you can see what best meets your needs (you can post to many forums at once). All you have to do it use the quick jump menu at the top.

Another option is for you to call a therapist - maybe you know one in the community, or have a friend who can recommend one - that can help you as you try to manage this process. It sounds like you may have a lot on your plate, although it's great that you've got the support of your fiancee.

Hope this helps some.

PaLady

Post Edited (PAlady) : 1/18/2009 11:47:19 PM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 1/19/2009 12:06 AM (GMT -7)   
Oh honey of course you are upset and terrified. You have a very good reason to be. Yes, its very scary to see someone on a vent. Both my Dad and brother were on vents, from having heart surgery. Five yrs ago my brother was in a terrible one car accident and was pronounced DOA-. They managed to bring him back by the grace of God. He was on a vent a very long time.
 
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
 
 


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 1/19/2009 2:27 AM (GMT -7)   
Raindrop; I am so sorry that your dad is sick. I can truly feel your pain in each word that you write. Please bear with me as I write this as I just lost my dad a few days ago and am still grieving. Much is lost in words that one can give to siblings when they are dealing with a sick parent and trying to comfort another parent. With that said I hope that you can be strong for your mom and try to make it through this knowing that my thoughts and prayers are with you as I head home to bury my own father. I know that my sadness does not help you much but believe me when I say stay by your mom's side keep praying and love your mom as much as you can and that will get you through these times.

Hope this helps.

hugssss

Scarred
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Slight herniation at L2-3 but Neurosurgeons will not operate because of previous failed surgeries. Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Lunista, Topamax and Robaxin.


AndreaRN
Regular Member


Date Joined Mar 2007
Total Posts : 91
   Posted 1/19/2009 6:05 AM (GMT -7)   
I agree with the above posters so will not have much to add. Being on o2 of 70% tells me that he is very ill.

Please force yourself to eat nutritious foods and pop a vitamin or two. You have to take care of yourself first in order to help your Mother.

In an ICU the patients ongoing and changing vitals are addressed continuously. (even tho the cause is not yet known)

You might ask your father in example .....to blink his eyes slowlly twice for yes to answer your question and once and hold shut for a few seconds if he means no. This will ensure some basic communication. Ask if he has pain. Try to be calm and tell him he has experts doing everthing they can but the tests take time. Tell him he is being watched at all times even if a nurse is not in the room. Last is very important to the patient.

God Bless to you and yours,

Andrea
Women who behave don't make History!

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jenpen400
Regular Member


Date Joined Apr 2007
Total Posts : 117
   Posted 1/19/2009 7:37 AM (GMT -7)   
You are very strong! Helping your mom and visiting your Dad is quite a task. My Dad stroked out over the Holidays and my mom was hopitalized the month before because she lost the will to live. (Dad has terminal cancer) When you get the chance cry beat a pillow whatever it takes you can't hold in all the pain it's too much for anyone to bare. Also as other posters have said take care of your self you don't want to get sick now. I always carried my meds a bottle of water trail mix and something to read. My prayers are with you and your family please when you find the time let us know how it's going, hugs all around.

jennifer
Chronic pain, anxiety, PTSD, and Depression. Norco Soma Ambien Xanax Tramadol and Prozac.


raindrop
Regular Member


Date Joined Jan 2009
Total Posts : 24
   Posted 1/19/2009 10:22 PM (GMT -7)   
Thank you all so much for your thoughtful words and prayers. This really means a lot to me!   He is still on the Ventilator...at 50% (so they have decreased it a little).  They did a CT scan Friday and a Bronchoscopy Sat.  We will still not know the results until tomorrow or the next day.  The Pulmonologist keeps telling us that they think he has COPD...but they are not sure yet.  I guess we just have to wait for the results of the Bronchoscopy.   He is still running a high fever.  His fever today at 11:30am was 102.7ax, and came down at our 5:30pm visit to 100.3ax.  They are giving him different broad spectrum antibiotics since the other broad spectrum antibiotic isn't working(per the nurse). 
 
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)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/19/2009 10:38 PM (GMT -7)   
Dear Raindrop,
This is such a stressful situation for you. i remember those days well, and as an only child I pretty much had to juggle it all. The social worker may be busy, but still keep asking for help. You may have better luck if you write down some specific questions you have and if necessary leave them on her voice mail or for her. You can also keep asking the nurses. They're busy, too, especially in CCU (I'm sure you know this) but they may be able to get a few minutes to help you understand what's going on. If it continues for much longer, think about getting yourself a therapist just to lean on so you can vent all your feelings and fears as you go through this. I have leaned heavily on a therapist during times like this in my life. Friends are also invaluable. Sometimes they can even come to the hospital and just go for a break with you. And depending on how you feel about this, sometimes the hospital chaplain can be a great support. You don't even need to be strictly religious to use their services in most cases.

As far as the FMLA, since the DON is the one who suggested you fill out the paperwork, I'd really ask about that so you don't put your job at risk. Some places don't allow you to use sick leave for those situations, but the devil is in the details. FMLA is unpaid leave, but you can take it to help care for a family member who's ill and that definition can be stretched, I think. I think going to H.R. is a good move, and I'd try to get in writing whatever they tell you so you're covered.

We'll be thinking about you as you deal with this.

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 1/20/2009 12:28 AM (GMT -7)   
Hi Raindrop,
 
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
 
 


raindrop
Regular Member


Date Joined Jan 2009
Total Posts : 24
   Posted 1/22/2009 7:48 PM (GMT -7)   
Thank you all so much for caring!  This means so much to me, more than you'll ever know.  I don't have any friends who have been through this...so even though they are concerned, they don't totally understand.  I'm glad I found this site and know that you all understand what it's like.
 
My dad is still on the Ventilator. It's been a long time since he's been on it, (He was sent to the ER on Jan12, so that's like almost 11 days!  They keep moving his vent settings up and down.  At one point, it was 70%...then they moved it back down to 55%, then 50% (yesterday  when I visited him) and today it's down to 45%.  All the doctors do not know what it is exactly that's going on.  He had a Bronchoscopy done over the weekend and nothing is growing!!!  His sputum culture and blood cultures and EVERYTHING have come back negative!  The Pulmonologist has explained that his chest X-rays are more clear, but he still needs the Vent to breath properly and isn't ready to come off yet. (She told me the max he can be on the vent is 3 weeks, then if he's still not ready..a tracheostomy will be performed). She said the fluid is more in his chest now instead of his lungs?  His PCP even called in what he called an "infectious blood doctor" so he could read over the charts and see if the other doctors may have missed something (this was yesterday), and this "special doctor" couldn't find anything and said just to keep him on the same Antibiotics. 
 
The Pulmonologist did say today that they did an Ultrasound on him and found on the top part of his right kidney was irregularly shaped...like it could be a cyst but she wasn't sure.  She said they would do a CT scan of his kidneys.  She also said they were going to increase the diuretics he was receiving to help drain more fluid.  She said that he has pretty much gotten over the pneumonia but now there is more fluid in his chest. I, myself, don't understand how a cyst on his kidneys could have anything do to with all the fluid in his chest...and why is the fluid more in his chest and not his lungs (his lungs were filled with fluid)? I'm not asking you guys this because I know this is not a diagnostic forum....these are just the questions that keep coming up in my mind over and over.  I'm going to try and do some more research on this.  I did ask her if she thought it could be a tumor but she told me that, that was highly unlikely and it was more likely a cyst. 
 
He is still on the Ventilator at present but his vital signs are great!  His O2 saturation is 95-100%, but the Vent setting is at 45%.  cry
 
I haven't worked all week...just too emotionally drained and it does wear you out going back and forth from the hospital all day.  I did go to the Human resources dept on Tuesday at my work and received a form (FMLA) for my dads doctor to fill out.  My work did say I would qualify.  My dads doctor did fill this out today and faxed it to them.  I plan on going back to work on Monday but I just hope it won't be too horrible!  I haven't cried in the past two days but feel like I'm on an emotional rollercoaster.  I'm starting to think more positive...like maybe he will get through this.  I just HOPE!!!
 
 

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/22/2009 11:33 PM (GMT -7)   
Raindrop,
It's good to hear from you. I know these things can be extraordinarily draining. The waiting. The not knowing. And the doctors are probably doing their best. Again, I encourage you to get more support for yourself. Also, remember you can use FMLA time in increments - I believe as small as an hour at a time. Maybe working part time would give you a chance to catch your breath a bit, but still stay in your routine somewhat.

Do take care of yourself. We're here anytime you want to post.

Hugs,
PaLady

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 1/23/2009 3:35 AM (GMT -7)   
Raindrop just want to give you a little support,First you did save your dads life for making him go to the Hospital.Next I want to tell you not to worry to much about how your dad is feeling right know because even though it is very frusttrating for him not to talk to you right know when he gets better he will have a very hard time remembering the time that he is on the ventilator.I know this first hand.I was on a ventilater for 3 weeks one year ago.I was in the hospital off and on for almost half of the last year.Even though you can hear people when you are medicated after you are better you do not remember very much.I do not remember when thay had me tyed down.I bet I do not remember more then 24 hour out of the whole 3 weeks.Thay say that that is how it is for most people.If you can work it out for someone to be there at all times that will help your dad.If your famialy and freinds could help it would be nice (I know that not everyone has enuff famialy and friends to do this)If you can not do this make sure that you or your mom are there when your dads DR. makes his rounds and make sure that he will talk to you about your dad(Do this in the hallway not in the room).When your dad starts staying awake more and is a little stronger get a light weight clip bourd and a pencel for him.He will be very weak so it has to be light weight.Any way I hope that this might help you and that your dad starts to get better soon.
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


raindrop
Regular Member


Date Joined Jan 2009
Total Posts : 24
   Posted 1/23/2009 1:21 PM (GMT -7)   
Thank you all for your kind words and encouragment.  When visiting my dad today, I saw that his blood pressure had gone down a lot...like 90's/50's, usually it's much higher and his pulse rate was 130's and very irregular (It was irregular though for years so this isn't new).  The Pulmonologist told us that the low blood pressure could be a result of the diuretics he was receiving to help drain the fluid out of his chest.  She also told us that he has a mass on top of his right kidney that was about 4cm...but that couldn't be addressed further until he got well and off the vent (if he does get well). The Diuretics didn't drain enough fluid out like they had hoped, so they stopped the diuretics.  He was very sedated and sleeping while we were visiting...so we didn't try to wake him.  We just held his hand and talked softly to him.
 
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. 

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/23/2009 1:36 PM (GMT -7)   
Raindrops,
Don't apologize for anything you're feeling or saying to us! Your last post reminded me of when I was with my mother in the hospital and later im the nursing home and when they say people need an advocate it is so true. I had to push and push and ask and ask, and finally ended up screaming at the nurse's station one night so my mother could get her pain meds 1/2 hr. early, which was within their discretion. My mother had end stage lung cancer that had spread to her bones, so it's different than your Dad, but what may not be different is that you may have to get angry to get something done. Your father deserves a second opinion, so do not hesitate to ask his PCP to intervene. If that doesn't work, keep going to every doctor or nurse and ask firmly to be told what is wrong with your father, and what his prognosis is. Now be prepared to hear things that may be painful, which is why having a good friend with you for YOUR support could be helpful, but you may have to continue to be your father's advocate as you have been from the begining.

As others have said, you have saved his life. His condition may be such that and maybe even the doctors can only do so much, but you deserve to know that. But I know how draining it is to be that advocate. To have to push the medical system when you'd rather be at your father's bedside. But you may need to do it. If you still don't get answers, ask to see a hospital administrator. Sometimes you can find a good social worker or nurse who can help you...and intervene so you get the information you need. You just have to keep trying until you find that person. There was a scene from a movie with Shirley McClain where she was screaming at the nurse's station to get her daughter her pain meds. That's how I had to end up looking. I hope it doesn't have to get to that point with you, but it's very draining on you so no wonder you need time off of work. And my suggestion of the counselor isn't because there's anything wrong with you - it's purely for support through this if it's something that's going to continue. And it's fine to get your Mom some help first. Again sometimes the hospital chaplains can be helpful even if you're not particularly religious.

We're here and others are also giving you some great advice.

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 1/23/2009 2:59 PM (GMT -7)   
I'll offer up my shoulder for when you need it and
send you lots of soft hugz and prayers...
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straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 1/23/2009 4:31 PM (GMT -7)   
RainDrop so good to see some more posts from you. I haven't been online the last couple of days. Oh, honey, I imagine at this point you are just livid with not getting answers. However, I can see how its difficult to give an answer to a question that really don't know about either. I really thought once they did the bronch they would actually be able to give a proper diagnosis. How frustrating this is.
 
Cysts on kidneys are common so my kidney dr told me. I have a 3cm one on my right kidney. I was told that sometimes if they get up tp 5-6 cm, they can drain them. It really depends on the person. I too was quite surprised when this was discovered on an x-ray. All we have done is just monitor it and if I have a problem with it I know what kind of symptoms to look for.
 
Please go the hospital admissions office and ask if the hospital has a "Patient Advocate". If so, by all means see this person. I had to obtain the services of one once when my husband was admitted thru ER and under the care of a physician that did not have a clue how to treat my husband. I had to have this "patient Advocate" in the room w/me when I fired this dr. Not only did I fire him but he threw the biggest tantrum in front of this person & he was written up for his behavior. This idiot actually screamed at me and shook his finger in my face, oh it was ugly, but somehow, I managed to remain calm, which I found out later was to my benefit. Because the patient advocate stated in her reprt that I remained calm and the only shouting involved came directly from this dr. and in no way did I do anything to provoke this dr. Oh, if she only knew what I wanted to say to this dr.  A patient Advocate has a wealth of knowledge on very good drs in the hospital system, she helped me get an infectious disease dr on board with my husband. This dr came in and did more in one hour than the other one did in 4 days. Not only that but he knew exactly what was wrong before we even got the cultures back,lol.
 
I do admit this all sounds like a big mystery with your Dad, its just going to take the right dr to get to the bottom of this it sounds like. Yes, I just knew you would get your leave approved. However, remember, when your  Dad is released to go home, your Mom will need your help, so save some time for that as well.  PALady was correct, you can use your FMLA in increments.
 
At this point it may serve you well to return back to work to get your mind on something else even tho its only temporary. I know with all of this going on it feels like it has gone on a life time. Keep your chin up and please let us know honey how things are going. You have alot of shoulders to lean on here. Hugs, Susie
 
[Susie - I only took out the extra lines at the end of your post. There were hundreds. Not sure what happened - likely some glitch. ~~Ides]

Post Edited By Moderator (Ides) : 1/27/2009 10:03:15 PM (GMT-7)


raindrop
Regular Member


Date Joined Jan 2009
Total Posts : 24
   Posted 1/25/2009 10:36 PM (GMT -7)   
Again, thank you all so much for your incredible support.  This has actually helped me, believe it or not.  Reading others' stories and what they've gone through as well.
 
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)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/25/2009 10:53 PM (GMT -7)   
Dear Raindrop,
I'm so glad posting here is helping you cope. That's the great thing is the forum is here 24/7. I'm sorry about the second opinion your mother received, although possibly it's going to help you in the long run to accept how serious your father's condition may be.

That being said, your father is alert at times and coherent and is telling you what he wants, so that helps make the decision easier for you and your mother, I think. One thing might be helpful is asking hospice to be called in for a consult. Now that may sound too scary or depressing, but
they can be extremely helpful if it turns out the long term prognosis for your father isn't what you want it to be. But they can help all of you as a family make some decisions about future care.

Going to work for awhile may help you and remember there are bathrooms for when you feel like you need to be alone for a bit!

PaLady

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 1/26/2009 12:36 AM (GMT -7)   
Raindrop ask the DR. if he has ARDS.I got this after I was on the vent for about a week.It causes water(fluid) to build up in the lungs.A lot of people here have told you that you might have to push to get ansewers and thay are right.If anyone in your family has any medical training (Like a nurse) get them to do the talking for you.I have two sisters who are nurses and thay both pushed the DR. to give my family every bit or info. on my care and how I was doing.If your dad ends up with a trac. do not take it to hard. After a few months of healing most other people do not even see it unless you point it out.
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Surgery to fuse L3 and L4 vertabra Dec. 31,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 1/26/2009 3:26 PM (GMT -7)   
Raindrop,
 
Thank you honey for the update on your Dad. I do wish things had gotten better by now. But, I totally understand where you and your Mom are coming from about the 2nd opinion. I do wonder if this 2nd opinion consisted of a chart review only. But, as long as you are happy with his pulmonary dr now thats whats important. I think at this point I would have to let him call the shots so to speak. Do you know if your Dad was tested for Ards, ask the nurses or doctor this question.
 
If you feel you need a private moment at work, do as PA suggested go find yourself a bathroom. If you need to go have a good cry, then honey have one, don't feel you have to keep it in. Just do the calm thing when visiting your Dad to help keep him calm. I do think its wonderful that they can reduce his meds long enough to allow some communication with your Dad. Yes, he is obviously a fighter.
 
I am very glad a minister came in and prayed for your Dad. I will tell you prayer in numbers is powerfull. Miracles can happen, my brother is one. My brother had just joined a church a couple months prior to his accident. I think a neighbor notified someone at the church about what happened to him. This church is a huge place with thousands of members. They sent individuals up weekly that actually went into his ICU room and prayed for him. Like your Dad only 2 people for a very short peroid of time. This was during the first 6 weeks of being told he would not make it. Every single time they came & prayed my brothers numbers turned around. His condition was based on what his numbers were telling them. Of course thru out the 6 months they continued to come and pray. Keep up your faith and yes go into his room and pray for him and have the minister come back.
 
Honey, you keep coming back and letting us know how things are coming along when you get a chance. We all know between working and staying with your Dad it leaves little time for anything else. Please try to keep your own health in check during this trying time.....Susie
 
 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 1/27/2009 2:44 PM (GMT -7)   
Raindrop,
Oh I wish the very best for you. I've been in a position similar to yours. It was difficult. So difficult.
Mom is gone now. I've recovered from the blow but I'll never forget. I remember now ... mostly the
very good things.
Pamela

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


raindrop
Regular Member


Date Joined Jan 2009
Total Posts : 24
   Posted 1/27/2009 10:43 PM (GMT -7)   
Pamela Neckpain, I am so sorry you had to go through that.  Being in the position I am in now, I can understand your pain and am so, so sorry your mother didn't make it!  I am glad you can remember the good times you had with her!
 

raindrop
Regular Member


Date Joined Jan 2009
Total Posts : 24
   Posted 1/27/2009 11:22 PM (GMT -7)   
I just got off work and it's almost 1am my time...I also just took a prescribed Xanex, so my writing may be a little sloppy.
 
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!!! 

raindrop
Regular Member


Date Joined Jan 2009
Total Posts : 24
   Posted 1/27/2009 11:34 PM (GMT -7)   
mom9mom said...
Raindrop ask the DR. if he has ARDS.I got this after I was on the vent for about a week.It causes water(fluid) to build up in the lungs.A lot of people here have told you that you might have to push to get ansewers and thay are right.If anyone in your family has any medical training (Like a nurse) get them to do the talking for you.I have two sisters who are nurses and thay both pushed the DR. to give my family every bit or info. on my care and how I was doing.If your dad ends up with a trac. do not take it to hard. After a few months of healing most other people do not even see it unless you point it out.

I had actually been doing a lot of studying on the internet...and found a question like mine on Ask.com (I know it's not a diagnosis website but I was desperate)! The queston was about a relative that was on a Vent and couldn't come off of the vent...and what should they be thinking about.  One poster mentioned that it looked as though his relative had ARDS. I then began reading a lot about ARDS and realized that my dad has a lot of the signs and symtoms of this disorder.   I missed my dads visitation today at 12:30 due to oversleeping mad .  I do plan on asking the doctor this tomorrow...and if I don't see the doctor, asking his nurse to put it down in his/her chart.  Thank you for the suggestion. :-)

Post Edited (raindrop) : 1/27/2009 11:40:53 PM (GMT-7)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/27/2009 11:58 PM (GMT -7)   
Raindrop,
I just want to give you a pat on the back and then some for doing all you're doing. It is exhausting so of course you're going to sleep through some things. With our parents and others we love there's a tendency to want to try to control everything, when our heads know we can't but our hearts fight that. It takes oh, so much energy, as I said earlier, to play that advocate role, but you're doing a great job.

Just take care of yourself some in this process. I know you're trying to.

PaLady
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