Today has been the worst day for us so far. My dad is miserable and depressed and suffering from what the doctors call "ICU phsycosis".
We awoke to a phone call from Susan telling us that he needs us to get him out of there (ICU). Immediately we took a cab and demanded to speak with Dr. Gupta. We caught him as he was going into the ICU and I told him that we didn't feel he was being taken care of properly and that he doesn't seem do be doing well mentally. I asked if we could allow for him to have a "break" from the ICU for a day or two then readmit him if needed. The doctors unfortunately still feel that the ICU is the best place for him to be with his immune system so vulnerable. I argued that his mental state is so poor that I don't think he is able to heal in this state of mind. I feel that he is going crazy with the lack of sleep and inability to communicate with the nurses. My father is not a difficult or demanding person, so to see him in such a miserable state makes me feel like something is really wrong. Dr. Gupta explained that this kind of depression is normal "ICU phsycosis" and that after such a traumatic surgery it is inevitable that when the drugs start to ware off there is a period in ICU where the patients go through this. I just wish they could allow me to be in there to make it easier. To rub his feet and back, read to him to pass the time and help to explain to him why the nurses are or are not doing certain requests that he may have. He is so frustrated and angry... and my dad is never angry.
Dr. Gupta allowed for me to see him, Renee sat this one out as her stomach is in knots today and we didn't want her to get too close. I had written him a note in case they didn't allow me to see him. I read it to him. I explained that he really needs to tell me exactly what is going on in there so that I can fix it. He told me that he just wants someone to rub his feet. He wants privacy when they expect him to go to the bathroom, he wants to get out of bed (which they say he is not allowed to do because he is too weak), he wants someone to rub his back a few times a day, he wants ice cubes when he asks for them- not 30 minutes later. Sometimes he wants his glasses on/ off. He said they only give him sponge baths and haven't brushed his hair. Just basic things. So I told him I would take care of it. He begged me to get him out of ICU and said over and over that he can't do it another day.
The only words of encouragement that I could muster up without giving him false hope was to remind him that he just had a MAJOR surgery... they just took one of your organs completely out of your body and replaced it with a brand new one. You can't expect for this recovery to be easy. There are going to be good days and there are going to be days that fell like absolute HELL. That is the payoff. But once you get through this, things WILL get easier. Luckily, your liver is doing wonderfully and your kidneys are making positive progress! Just hang in there and there will be better days... I promise. Don't give up now, you have come too far. The nurses came in and asked me to leave. His body immediately tensed up again and he said "please don't leave me... don't leave the hospital." I told him that I wouln't and that I was going to go talk to Dr. Gupta again and see what I can do. I also told him that I was going to get a second opinion on the situation and then I would call him.
There were a few things he said while I was in there that did make me feel like he was suffering from "ICU phsycosis". He told me to be careful when I was talking about the nurses "because they are listening to everything we say". He also thought it was 1:30 in the morning when it was really 1:30 in the afternoon.
Dr. Gupta denied both of my requests. "Maybe tomorrow" he replied. We called a friend of Titi and Cedricks who is a Dr. in the Cardiology division and went to meet with her. We explained the situation and had her call the doctor on duty to ask a few questions. After getting all of the facts, she too agreed that rushing him out of ICU would be a bad decision, especially with his kidneys and the latest infection. This depression is normal, and I know it is hard for you to not be able to help him but unfortuanely it is part of the process.
So I did the only thing I know how to do when things aren't getting done. I made a list. I made a list of the simple requests from my dad, and gave it to the doctor on duty. I went over every step and asked if they could give him something to help him sleep. Then I called him and told him that they won't allow him out of ICU, and they won't allow me to be in ICU to take care of him, but that we will be close by. I explained that I did give them a list of daily things they need to do for him, and said that if the nurses don't do something for him that he needs, he should request to speak with the doctor on duty and ask him to get it done. If you want your feet rubbed- say so. After telling him that they would give him a sleeping pill tonight, he seemed to be a little more relieved. I went and got him a large glass full of fresh ice cubes from the coffee shop too.
Renee is a bit nausious today and is feeling like Bruce Lee kung-fu kicked her in her side. We picked up a prescription to help her fell better and have taken her back to the hotel to rest and will return to the hospital later tonight.
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This is painful to read and I only hope that Mike can leave the ICU quickly. I am sure it is normal that he is feeling so down but I do wonder how it affects his health. This may sound crazy but is an anti-depressant drug a possibility? I can hear the frustration and the desperation in the situation. I wish I could help. Is there anything that any of us can do from here? What about sending him packages in the mail? It may take too long to get there but maybe it would cheer him up? Would the doctors let him have a package with goodies from family members or pictures and whatnot? If so, what's the specific address to the hospital? It's just an idea that might bring some happiness and light into his world if they let him have access to the little "gifts". I think many of us would love to know if this was a possiblility and Renee you may enjoy it too since you may be staying on. Let us know.....
ReplyDeleteSending our love,
jen, john, nadine, and matt
What Jen said above. If it is hard for us (Jack and Jeanne) to read this it must be terribly frightening and frustrating to be living this. Our hearts go out to you girls and our friend Mike. As I was reading this I too thought maybe an anti depressant or a sedative could help Mike, just something to calm him until you both are allowed back with him. Perhaps the sleeping pill will make the difference. But until then, it really sounds like you are doing everything-everything in your power to make things right and somehow your Dad knows this. Also as a bit of encouragement, when I spoke to Sue this morning, she said as angry as Mike was about his state of affairs, this phone conversation was the most clear and coherent he sounded since the surgery. She felt optimistic about that.
ReplyDeleteIt's hard to even try to understand what it must be like for all of you. We too wish we could do something to sooth Mike's frustration. Please let us know if a package could be accepted.
Neysa and Renee-like you said to your Dad you've come this far, you've already proven just how strong and loving you are. You can do this and so can Mike.
You are in our thoughts and prayers daily,
Jeanne and Jack
Thank you Neysa, for taking the bull by the horn. It seems as though you are doing everything that you can, so we all appreciate this! Please do your best to support Renee as well...You can help your dad by being there for Her, so that when She is better, she can double-up with you, in the loving care you give to your dad. Anesthesia is such a wierd thing, It takes weeks to work it's way out of your system, and just from my own experience, Emotions run high, and later, many of the expressions of discomfort, or dismay are forgotten. I don't know why cleanliness is not being addressed-this is discerning, I think that this is the first thing that I would badger them about...it would, I believe make the world of a difference in his comfort. Keep up the good work, both of you young women...we all have new things to pray for as you report these things to us, so thank you for the perspective & detail in your reporting...Please Express to Mike, if you can talk to him on the phone, that He -(and you girls too of course)- truly is the main focus in All of his Family's lives right now, and it won't stop until he is safe...ALL OUR LOVE, Aunt Rita
ReplyDeleteI read the post each morning and keep the folks at pottery class up to date with what is happening. today I asked a nurse friend why they are keeping Mike in ICU and why you aren't allowed in to stay with him.... The answer was: This is major surgery and obviously the docs are concerned about infections. Being such a critical time, it is best to stay in ICU. But if outside infection is such a threat, then all personel going into the room should be gowned and masked and gloved. And you family members should be able to go in and stay for a while if you are wearing the same. Perhaps that would cheer Mike up....
ReplyDeleteYeah Blu...I thought the same thing about masking and gowning up like anyone else...there's no reason why it shouldn't be the girls...they're not any "germier" than the other folks-who hang out around all kinds of other sick people all day long! Good Luck Young Grasshopper! Love Ya's & G'nite...
ReplyDeleteI've never seen a UPS or FedEx truck here, but you could give it a try. Don't go crazy, but I'm sure dad would love simple things like pictures. They have allowed gifts into the ICU. I don't know what the limitations are. Wouter might know better how to send things here by mail. I'll ask him. Here is the address of the hospital. You should have the package addressed to
ReplyDeleteDr. Subash Gupta
c/o Michael Quintana
Indraprastha Apollo Hospital
Sarita Vihar, Delhi-Mathura Road
New Delhi 110076 (India)
A little after 5AM here in Colorado, so it is late afternoon in Delhi...I was hoping there would be a new posting with better news about Mikes progress both physically and mentally. Your name just popped up showing that you're on-line, Neysa. Maybe you are writing an update. I'll check again in a little bit. We were truly saddened and heartbroken to read about Mike's level of anxiety and state of "psychosis". We can only imagine the lonliness and helplessness that he is feeling, knowing how we feel, wanting to help, but not being able to do anything. A couple of things to think about:
ReplyDelete(1) Rita is absoluteley right about the effects of the anesthetics. We can hope that after this stage passes, Mike won't remember any of the horrible feelings he is expressing now. (2) By all indications, Dr Gupta and his team are still handling everything as it would be done in this country. Mike's recuperation and wellbeing are the priority, and whether it seems like it or not to us, the Intensive Care Unit is where he will get the best care. Most importantly, he is is being electronically monitored there, so that any problem which presents itself can be taken care of immediately. The hypertensive spike the other night and the removal of the infected tissue bear this out. The nurse/patient ratio, typically in the ICU, is 1:1, 1:2 or 1:3. Nurses in other units in the hospital will typically be taking care of many, many more patients than that. Also the level of training and expertise will be the highest in ICU nurses. I'll be the first to tell you that the ICU RN's after dealing with true life and death situations on a daily basis can seem "hardened", calloused or even aloof, sometimes. Believe me, I have my "go-rounds" with them pretty regularly, but at the end of the day I have to admit that if I was the patient in that ICU bed, it's that demanding, "bitchy" nurse I'd want taking care of me. Also, because Mikes immune system is compromised, he has to be kept in as clean an environment as possible and the ICU is definately the best place for that. As far as whether the Doctor is doing everything possible to sedate or keep Mike comfortable, we have to remember that the liver and kidneys are the two organs which are primarily involved with both the metabolizing (breaking down to usable and non-usable parts) and/or elimination of most drugs. Because both the liver and kidneys are on the mend right now, I'm sure Dr Gupta is being very selective in which drugs to use. We're very, very proud of how you are staying on top of things Neysa and Renee, and that you have your Dad's best interests at heart, but do work with Dr Gupta. He is on your side. Sorry to hear you had a little set-back, Renee. Hope today is a better day. Sandy made sure that your names are still on the prayer list at our church yesterday, so you can still count on that.
Last, but not least, remember that the liver transplant was the most worrisome part of your trip over there and both Mike and Renee are making good progress there, so the other problems should be just "bumps in the road".
Give our love to Mike when you talk to him.
Still praying for all of you,
Al and Sandy
Thank you for the address Neysa! I have been wondering about the mail situation for a while, but like others I suppose, have just figured that the time element would be crasy in terms of getting things there in a timely way. I'm sure your day there has been absolutely nuts...we ARE prayng for you! Not only for your dad, but also for YOUR strength, as we know that you are under a lot of pressure! I keep thinking about this ICU Psycosis-when you hear your dad talk, listen carefully, because he really is not in his "regular" mind's way of thinking. When he says things like, that the nurses, are all listenig to everything you say, remember that your dad IS normally an astute man, but the drugs are not connecting all! The nurses ARE listening and watching all you say, because of the language barrier perhaps...and it is their job to watch all!
ReplyDeleteGotta get ready for work-morning here-but stay positive for each other, and you might remind your dad to stay positive for YOU GIRLS TOO...HE IS a STRONG MAN, but he still is in the position of Father, and You are the only ones that can remind him of this. Remind him that he is NOT in America, and protocol is obviously different there...not what he's used to! We all love you, and don't like to hear of all this unrest, but keep communicating with us when you can, as your friends have said, "We hang on every word!" Peace darling nieces and my brother...we ALL wish that we could be there to help kick somebody's butt, so just use your eyes & ears to take ANY opportunity to get what it is that ANY of you NEED! I love you Lots! Auntie