Tuesday, April 28, 2009
Coming Home
We are sitting in the Delhi Airport waiting for our flight to depart. There is nothing more that we want right now than to see our family. Yesterday was a long day of paperwork with the hospital and U.S. Embassy. Renee and I had our own ceremony to have our father cremated. It was actually quite amazing and peaceful. We had my I-pod with the playlist of his favorite music, so we covered his body with flowers and told him that we were here to let his spirit be free. We both said our good-bye's after listening to "our song". We love him dearly and have been blessed with this time together.
Saturday, April 25, 2009
Gone with the angels - sueño con los ángeles.
This is the blog that we never wanted to write... and that you never hoped to read. Some of you have already heard the news, but for those of you who haven't... my father passed away today around 2:30 p.m. India time- 3:00 a.m. Denver time.
It had been a long night for us, we were both restless and felt something wasn't right. Our intuitions were confirmed with a phone call from the duty doctor at 2:00 a.m. We rushed to the hospital, (as I posted in the earlier blog). The doctor ensured us that he was stable so we returned to the hotel and slept for a few more hours. Early this morning we received another phone call requesting that we come to the hospital to give us an update. When we arrived his condition had worsened and he was not responding to any of the medication that they had given him. They had recessitated him several times before telling us that we only had about twenty-five minutes left with him.
So we stayed by his side and assured him that he didn't need to be afraid. We told him that Grandma and Grandpa were there to guide him through this transition. We reminded him, name by name, of everyone who loves him and of the things he loved in life. He didn't need to be in pain any longer. We promised him that he would be with us every single day in every decision that we make, and in everything we do. We also told him that he was a good man and an amazing father.
He was not consious... but we know his spirit was there. Renee and I held hands and prayed until he was gone.
It had been a long night for us, we were both restless and felt something wasn't right. Our intuitions were confirmed with a phone call from the duty doctor at 2:00 a.m. We rushed to the hospital, (as I posted in the earlier blog). The doctor ensured us that he was stable so we returned to the hotel and slept for a few more hours. Early this morning we received another phone call requesting that we come to the hospital to give us an update. When we arrived his condition had worsened and he was not responding to any of the medication that they had given him. They had recessitated him several times before telling us that we only had about twenty-five minutes left with him.
So we stayed by his side and assured him that he didn't need to be afraid. We told him that Grandma and Grandpa were there to guide him through this transition. We reminded him, name by name, of everyone who loves him and of the things he loved in life. He didn't need to be in pain any longer. We promised him that he would be with us every single day in every decision that we make, and in everything we do. We also told him that he was a good man and an amazing father.
He was not consious... but we know his spirit was there. Renee and I held hands and prayed until he was gone.
Friday, April 24, 2009
In Critical Condition
I don't know what to say, the doctors have said that he isn't responding to the blood pressure medication and he is on a ventilator to breathe. The doctors say that he is in critical condition. We will keep you posted. We are trying to contact family so please stand by your phone. We didn't bring Renee's cel to the hospital and it has most of the numbers in it so please post your number on the blog..
2 am phone call
We awoke from a phone call at 2 am from the duty doctor saying that they had to put him on a ventilator because he was having trouble breathing. They also had to put a tube going into his stomach to release some gas. I had a hard time understanding the doctor when he called so we immediately jumped out of bed and took a taxi to the hospital only to find that he was okay and in stable condition. They did give him a sedative and are planning dialysis tomorrow. His chances of getting out of ICU in the next few days are not looking good. But Renee and I are feeling like it may be the best place for him for now. We'll keep you posted.
3:12 PM
Now it is morning and the doctors said he was very sick last night and now he is on a lot of medications. We are headed down there to see if we can get a more detailed explanaton.
3:12 PM
Now it is morning and the doctors said he was very sick last night and now he is on a lot of medications. We are headed down there to see if we can get a more detailed explanaton.
Update
I left my computer with my dad today and showed his nurse how to play movies for him to pass the time. We also showed her how to open the blog, so if you have anything that you want him to read now would be a good time to write something short.
Renee and I spent the day at the hospital again trying to follow through with the progress of moving him out of ICU. We were told that he is able to be released, but they are waiting on a bed to open up. So that was good news that the doctors feel he is ready to move. We thought that if we waited around it may speed things up... but it didn't. They decided not to do dialysis today and will reassess it in the morning. Hopefully it won't postpone him moving out of ICU tomorrow because if he doesn't get moved tomorrow then he won't get moved til Monday.
Renee is feeling better tonight. I, on the other hand, was up all night with the same thing. Yesterday I kept denying my sick feelings, but at 1:00 in the morning there was no denying it anymore. Nonetheless, I think whatever we ate has been through us both now and hopefully tonight we will get some sleep and feel like new tomorrow.
We didn't push too hard to see him today because of our sickness, but when we talked to the doctor he felt that he was doing a little better mentally. He ate a banana and something else today and has had a little bit of output. When we spoke to him he still is saying "to get your butt down here and get me out!". They are being careful with the medication that they are giving him to protect his recovering liver and kidneys- so Uncle Al was right. We will be back first thing in the morning to see what the next step is.
One last thing... if you want to send something, you could probably just send it with Uncle Dave when he comes.
Renee and I spent the day at the hospital again trying to follow through with the progress of moving him out of ICU. We were told that he is able to be released, but they are waiting on a bed to open up. So that was good news that the doctors feel he is ready to move. We thought that if we waited around it may speed things up... but it didn't. They decided not to do dialysis today and will reassess it in the morning. Hopefully it won't postpone him moving out of ICU tomorrow because if he doesn't get moved tomorrow then he won't get moved til Monday.
Renee is feeling better tonight. I, on the other hand, was up all night with the same thing. Yesterday I kept denying my sick feelings, but at 1:00 in the morning there was no denying it anymore. Nonetheless, I think whatever we ate has been through us both now and hopefully tonight we will get some sleep and feel like new tomorrow.
We didn't push too hard to see him today because of our sickness, but when we talked to the doctor he felt that he was doing a little better mentally. He ate a banana and something else today and has had a little bit of output. When we spoke to him he still is saying "to get your butt down here and get me out!". They are being careful with the medication that they are giving him to protect his recovering liver and kidneys- so Uncle Al was right. We will be back first thing in the morning to see what the next step is.
One last thing... if you want to send something, you could probably just send it with Uncle Dave when he comes.
Thursday, April 23, 2009
Not Good
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.
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.
Wednesday, April 22, 2009
Out of Surgery back into ICU
Jennifer, I just saw your post and we apologize we didn't post again. The surgery was over about 1am our time and the Doctors said it went fine. They said they started a little late and wanted to make sure they took as many precautions during the surgery as they could- this is why it took longer than expected. I snuck into ICU with one of the doctors- of course with Dr. Sabash Gupta's permission. I spoke to dad for a few minutes and he was disappointed when I told him they are keeping him in ICU today to make sure everything went well with the surgery last night. He was talking and aware of things going on around him, but sleeping when I first walked into the room. I really pray they get him well soon. We have the duty Doctor's cell phone number and they said they will give it to dad from 7-7:30am and 4-4:30 so we can talk to him. The connection seems to be better on the cell phone. I hope this works.
Neysa and I went to the hospital this morning and I had another interview with an Indian news television station. It was a fun interview because it was interactive with Dr. Sabash Gupta. They didn't know exactly when it will air nor did they have a business card to give us about the station. Dr. Gupta said he would get me the information when it becomes available. The interview was made for the Apollo hospital to have the Indian people gain knowledge about living donor liver transplants. Before me they interviewed a Doctor from the hospital who had a liver transplant 5 months ago.
I have my internet working now, so what questions do you have?
Neysa and I went to the hospital this morning and I had another interview with an Indian news television station. It was a fun interview because it was interactive with Dr. Sabash Gupta. They didn't know exactly when it will air nor did they have a business card to give us about the station. Dr. Gupta said he would get me the information when it becomes available. The interview was made for the Apollo hospital to have the Indian people gain knowledge about living donor liver transplants. Before me they interviewed a Doctor from the hospital who had a liver transplant 5 months ago.
I have my internet working now, so what questions do you have?
Tuesday, April 21, 2009
Minor Infection
Dad was not moved out of ICU today because they found that his incision site was a little infected this morning. The doctors had decided to remove the infection completely so it doesn't become a problem. Renee and I went to the hospital around 3:00 to sign the papers to allow him to have the minor surgery so they could get him in tonight. The doctor said that his surgery would be at 8:30. So we waited until then so we could see him and talk to him on his way down to the Surgery Center, very sneaky on our part since they won't allow us in ICU. He looked a little pale and his arms were really swollen and bruised. He asked us if we were going to be around for a bit and we said yes. We told him to stay strong and explained that this was just a minor surgery and nothing to be afraid of. We also wanted him to understand that they wanted to monitor him for 48 hours before deciding if he could be released from ICU. I know that he wants to get out of there really badly. Every day that he doesn't get out of ICU he is really disappointed. But because he is so prone to infection, and will continue to be, the ICU is probably the best place for him to be until the doctors decide to release him. I know they are monitoring him 24-7 and taking care of him, but I don't think he is comfortable there, or happy, and i know that I could take better care of him in every other way except protecting him from infection, and that is the most frustrating part. I hate being here and not being able to see him.
2 weeks after Liver Transplant surgery
Neysa and I went to the hospital yesterday and I was able to get my bag removed. We met with Dr. Gupta and he says he wants to wait and see what the kidneys are going to do. Ideally he wants to wait 4-6 months because he feels they are making some improvement. We asked why dad was still in ICU and he said because the nurses are having to do a lot for him. Neysa agreed and assured Dr. Gupta that she can take care of dad in a regular room and we all agreed that it would be better for him mentality. So, Dr. Gupta said they would do one more dialysis and then tomorrow (today) he will be moved into a room. Neysa was able to get "special permission" to go see him for a few minutes. He appears to be doing better.
We called this morning and were told to come to the hospital this evening. I really hope it will happen today! Dad is really wanting to get out of there.
Neysa and I have tickets to return to the US on 2/28/09. Neysa has to leave at that time because her month of May is full of weddings. I on the other hand am trying to see how much longer I can stay to support dad. We have asked Uncle Dave to come out early May and we're hoping that our trips will overlap some so we can show him the ropes. Amber is making some confirmation calls for me for parties I have in May and I'm trying to keep that in perspective. She says my first party is the 7th but I'm sure I could find someone to cover it if need be. I would rather not leave dad by himself here and with the help of flight attendants and the airlines I'm sure I will be able to fly alone. I am not able to lift much right now and will not be able to carry much of anything onto the plane by myself.
Aunt Suzi- maybe you could check to see the availability I have to postpone my ticket? You can just send me an email. Thanks!
As far as my recovery goes- I am getting around just fine. I feel I walk with an "old lady lean" to the right side so I got an abdominal support belt to wear. It seems to help the strain on my back where I feel pain come and go. I actually slept the whole night without getting up! I find sleeping on my left side easier than anything. I can't really lay on my right side or stomach yet. I'm learning how to eat again with 1/2 the liver and wished they would have explained it to me before. I didn't realize that the liver processes all the food you eat and when you only have 1/2 the liver you can only eat 1/2 the food. (I wouldn't recommend it for a crash diet though). I would imagine it's a lot like having 1/2 the stomach. So I've been eating little snacks (meals) about 5-6 times per day. Currently they have me on 3 medications: Oflox, Zevit and Pantocid DSR. I'm off the pain pills now!
Saturday, April 18, 2009
Just Waiting
Neysa and I relaxed in the hotel room today. We ordered breakfast, lunch and dinner in. Neysa made it to the gym and I've been relaxing, napping, reading and working a little.
We spoke to dad twice and he seems to be very anxious to get his hair washed. The Doctor's are talking about moving him out of ICU but haven't told us a day yet. Neysa and I plan on making a trip to the hospital tomorrow to try and get my drainage bag removed and check in on dad. We're really hoping we can catch them moving him tomorrow. This morning the Doctor told us he had produced 300ml. Good news.
Thursday, April 16, 2009
Out of touch
First off, I must apologize for being out of touch the last few days. The internet at the hospital has been down. Renee and I decided to make a video for her last day in the hospital. Hope you enjoy it! Dad is doing a little better. His kidneys are slowly producing more unrine - 200ml yesterday. Which still isn't a lot, but it's better than nothing. He is still in ICU. But is starting to make sense and even joke with the nurses. Today we were allowed to leave him a book and my i-pod, with a playlist of his favorite music. I wrote him a funny note too- since the nurses still won't let me see him.
We spoke with the kidney specialist yesterday to get a better idea of what we are looking at for his recovery. He said that he wants to wait another 4 wks before deciding if it is necessary to do a kidney transplant. That makes me feel confident that they are not just trying to make money and sell us a "quick fix" for an unnecessary surgery - and that they are optimistic about the possibility of their recovery. Susan, Jen, Renee and I had a list of questions that he answered, so our meeting was very informational. I'll spare you the details, but we are hoping that they recover on their own so he can come home soon.
We spoke with the kidney specialist yesterday to get a better idea of what we are looking at for his recovery. He said that he wants to wait another 4 wks before deciding if it is necessary to do a kidney transplant. That makes me feel confident that they are not just trying to make money and sell us a "quick fix" for an unnecessary surgery - and that they are optimistic about the possibility of their recovery. Susan, Jen, Renee and I had a list of questions that he answered, so our meeting was very informational. I'll spare you the details, but we are hoping that they recover on their own so he can come home soon.
Monday, April 13, 2009
1 week after surgery
Today I am feeling much better than I've felt. Given the news we had 2 nights ago and the inability to move freely, I wasn't able to sleep more than an hour and a half or so. Last night I got good sleep and was even able to sleep on my left side in a comfortable position. I woke up a lot, but was able to go back to sleep.
I took my first staircase yesterday and went up and down. Seemed to work pretty well. I also went down to the cafe and had a strawberry milkshake with Neysa and some friends we met in Jaipur. It was great to get out of the room and talk to someone who knew a lot about the culture here in India. We picked his brain with questions.
I'm getting my appetite back and am eating small portions through the day. Pain isn't much -I'm really trying not to take too much pain killer because I think sometimes you can really injure yourself more if you don't feel your body telling you "no". I am slow doing normal tasks but I'm up for the challenge. I have to get back into the habits sooner or later.
Doctor's say they are looking at my discharge for Thursday or Friday this week. At that point Neysa and I will find a hotel close by. As soon as dad gets out of ICU she will come back to the hospital and stay with him.
As far as my dad goes, Dr's say his blood pressure has stabilized and today for the first time there is a little output from the kidneys (100ml).
I took my first staircase yesterday and went up and down. Seemed to work pretty well. I also went down to the cafe and had a strawberry milkshake with Neysa and some friends we met in Jaipur. It was great to get out of the room and talk to someone who knew a lot about the culture here in India. We picked his brain with questions.
I'm getting my appetite back and am eating small portions through the day. Pain isn't much -I'm really trying not to take too much pain killer because I think sometimes you can really injure yourself more if you don't feel your body telling you "no". I am slow doing normal tasks but I'm up for the challenge. I have to get back into the habits sooner or later.
Doctor's say they are looking at my discharge for Thursday or Friday this week. At that point Neysa and I will find a hotel close by. As soon as dad gets out of ICU she will come back to the hospital and stay with him.
As far as my dad goes, Dr's say his blood pressure has stabilized and today for the first time there is a little output from the kidneys (100ml).
Sunday, April 12, 2009
Dad
Hi Everyone,
Thank-you for all of your Easter messages! We thoroughly enjoyed everyone of them. It's strange to be so far away from everyone but still feel closer than we've ever felt to our entire family and friends. This blog has truly been a God-sent.
Although everything is back to normal now, we received news at 1 a.m. from the doctors that my dad had a severe hypertension episode. Our understanding is that it means a "a sudden spike in blood pressure". Luckily he is still in ICU so they are monitoring his every move and we feel confident that they are taking good care of him. Renee and I have been online researching to find out more about hypertension, and waiting to see the doctors so they can answer our list of questions. We will keep you posted as we get more information.
As far as his kidneys go it has been a bit of a roller-coaster ride this week. We've been waiting to post a blog until we have more sound information on the direction of his kidneys. We are still waiting for them to bounce back on their own, but the more time goes on the more we need to start preparing for other options and asking more questions. The doctors said that they can keep him on dialysis for as long as needed and that if they don't recover on their own within 6 months then he would be a candidate for a kidney transplant. Which, of course, would be much more affordable here. We are keeping our fingers crossed that with the new liver functioning properly that the kidneys will follow. If you would like to read more about this you can refer to this article; http://www.medicinenet.com/script/main/art.asp?articlekey=89292 .
-Neysa
Thank-you for all of your Easter messages! We thoroughly enjoyed everyone of them. It's strange to be so far away from everyone but still feel closer than we've ever felt to our entire family and friends. This blog has truly been a God-sent.
Although everything is back to normal now, we received news at 1 a.m. from the doctors that my dad had a severe hypertension episode. Our understanding is that it means a "a sudden spike in blood pressure". Luckily he is still in ICU so they are monitoring his every move and we feel confident that they are taking good care of him. Renee and I have been online researching to find out more about hypertension, and waiting to see the doctors so they can answer our list of questions. We will keep you posted as we get more information.
As far as his kidneys go it has been a bit of a roller-coaster ride this week. We've been waiting to post a blog until we have more sound information on the direction of his kidneys. We are still waiting for them to bounce back on their own, but the more time goes on the more we need to start preparing for other options and asking more questions. The doctors said that they can keep him on dialysis for as long as needed and that if they don't recover on their own within 6 months then he would be a candidate for a kidney transplant. Which, of course, would be much more affordable here. We are keeping our fingers crossed that with the new liver functioning properly that the kidneys will follow. If you would like to read more about this you can refer to this article; http://www.medicinenet.com/script/main/art.asp?articlekey=89292 .
-Neysa
Easter Sunday
I'm probably not going to be typing the best right now. I'm seeing a little bit of fuzziness in the words I type, but I read the blog earlier today and just had to comment on how much everything everyone said touched me! My mom said it perfectly a few days ago, maybe perhaps even at the same time I was lying in bed thinking about the cross I was carrying. The pain was a little more than I expected those first couple of days and I just had to think about how Jesus carried the cross and how it's Holy Week. My thoughts seemed to ease my pain completely.
I'm feeling pretty good most of the time and haven't needed too much pain medication. Neysa is napping and I couldn't close my eyes so I decided to type. I'm missing everyone back home. I hope everyone is spending time with their families and having a good time on this Easter Sunday. It's been really great having this time with my sister. She has taken care of every need and beyond. My back has been sore because of lying in bed and when I walk I can't really stand up straight. So there's a lot of soreness in my lower back. Her massages and constant care has really helped me improve and feel better. It's amazing how much your abs structure your body and your movements.
Dad continues to be in the ICU and they told Neysa and I today he is very susceptible for infection because of the dialysis machine and that we can't see him for a few days. We will arrange some times to talk by phone to let him know we are thinking of him. He is eating food now and they want to get him up and moving tomorrow. The doctors just came into my room and told me he is talking in sentences and he's still on dialysis. Dad was asking about his liver function and they told him it is working great. I know once they get him up and moving things will improve quickly for him.
I'm feeling pretty good most of the time and haven't needed too much pain medication. Neysa is napping and I couldn't close my eyes so I decided to type. I'm missing everyone back home. I hope everyone is spending time with their families and having a good time on this Easter Sunday. It's been really great having this time with my sister. She has taken care of every need and beyond. My back has been sore because of lying in bed and when I walk I can't really stand up straight. So there's a lot of soreness in my lower back. Her massages and constant care has really helped me improve and feel better. It's amazing how much your abs structure your body and your movements.
Dad continues to be in the ICU and they told Neysa and I today he is very susceptible for infection because of the dialysis machine and that we can't see him for a few days. We will arrange some times to talk by phone to let him know we are thinking of him. He is eating food now and they want to get him up and moving tomorrow. The doctors just came into my room and told me he is talking in sentences and he's still on dialysis. Dad was asking about his liver function and they told him it is working great. I know once they get him up and moving things will improve quickly for him.
Saturday, April 11, 2009
I'm Improving Daily
I really haven't had any interest in looking at my computer-nor could I sit up in bed. I'm so happy to hear from all of you through Neysa in the last few days of my recovery. I feel like every few hours I'm making progress. I have a exercises machine for my lungs called a "respiromoter". It has been improving with time. Today I went to see dad. They wheeled me across the hospital and I sat a chair in the room with him. He continues to be pretty tired but was answering my questions for the most part. I assured him he was getting better and that every day after the operation it gets a little easier. It's kind of crazy how I can almost completely understand what he's feeling. Keep him in your prayers so that his kidneys will turn around completely.
Friday, April 10, 2009
Victory Lap
Renee took a victory lap around her room today while they changed her sheets. She is able to sit up almost all by herself and is getting her appetite back. Before long she will be doing cart wheels in the hallways.
They say my dad is doing a little better today after the kidney dialysis. He may need to do it 1-2x a week until they start functioning properly. So it is to be expected that there will be good days and bad days, but hopefully more good than bad for a while - then just all good. The dialysis machine is so crazy looking. It reminds me of a pin ball machine or something. It's kind of bizarre to see the blood going thru tubes in this machine and pumping at the same rate as his heart. He said he's feeling better today but still had a hard time keeping his eyes open while I was there. The room they have been keeping him in has been a temporary ICU while they disinfect, steralize and fumigate the real ICU on the 4th floor. I guess that would explain the disarray I found the first time visiting. I wish they would have explained that a little better. Anyhow, I told them that I will be there to help him move, so I am expecting a call around 10-11. It's a good excuse to see him again and to make sure the new ICU is up to my standards.
They say my dad is doing a little better today after the kidney dialysis. He may need to do it 1-2x a week until they start functioning properly. So it is to be expected that there will be good days and bad days, but hopefully more good than bad for a while - then just all good. The dialysis machine is so crazy looking. It reminds me of a pin ball machine or something. It's kind of bizarre to see the blood going thru tubes in this machine and pumping at the same rate as his heart. He said he's feeling better today but still had a hard time keeping his eyes open while I was there. The room they have been keeping him in has been a temporary ICU while they disinfect, steralize and fumigate the real ICU on the 4th floor. I guess that would explain the disarray I found the first time visiting. I wish they would have explained that a little better. Anyhow, I told them that I will be there to help him move, so I am expecting a call around 10-11. It's a good excuse to see him again and to make sure the new ICU is up to my standards.
Not out of the woods yet
The doctors have said that my dad's liver is doing well but the kidneys are struggling a bit. When I visited him today he was on the dialysis machine and he said it hurt to talk. So I rubbed his feet and told him to concentrate on his breathing. I told him about everyone who has written on the blog and that it's already Friday. He smiled, I'm sure the last few days have been a bit of a blur. It's hard seeing him like that but at least I know he's not in too much pain. Every night before I go to bed, I imagine that I can heal his kidneys and focus all of my energy on making them better, so hopefully it works - I think it will.
Renee is finally off the IV and has only one drainage tube coming out of the incision site. She said the wound doesn't look bad. She hasn't walked yet today, but the night is still young, and i think we'll try within the next few hours. She started eating soft foods today. So she's recovering well.
Me, on the other hand, felt like a bit of a mess today. I had plans with Titi and Cedric (Esther's friends) for lunch but canceled because I didn't want to be away too long. I was a little emotional when I saw my dad today, but somehow managed to keep it together until I left. It's hard not really knowing how serious this thing is with his kidneys, I just want him to get better. I know that this next week is an important time to pay attention to every detail and ask lots of questions. I think the nurses in my dads ICU must think I'm crazy because I brought my own clorox wipes and insisted that they let me sanitize the room. When one of the nurses dropped her glove on the floor and tried to go into the room I asked her to change both of her gloves before touching him. Maybe that's why they have started to enforce the "visiting times" . Anyhow, it looks like they are keeping his room clean now that they know what is expected.
Renee is finally off the IV and has only one drainage tube coming out of the incision site. She said the wound doesn't look bad. She hasn't walked yet today, but the night is still young, and i think we'll try within the next few hours. She started eating soft foods today. So she's recovering well.
Me, on the other hand, felt like a bit of a mess today. I had plans with Titi and Cedric (Esther's friends) for lunch but canceled because I didn't want to be away too long. I was a little emotional when I saw my dad today, but somehow managed to keep it together until I left. It's hard not really knowing how serious this thing is with his kidneys, I just want him to get better. I know that this next week is an important time to pay attention to every detail and ask lots of questions. I think the nurses in my dads ICU must think I'm crazy because I brought my own clorox wipes and insisted that they let me sanitize the room. When one of the nurses dropped her glove on the floor and tried to go into the room I asked her to change both of her gloves before touching him. Maybe that's why they have started to enforce the "visiting times" . Anyhow, it looks like they are keeping his room clean now that they know what is expected.
Thursday, April 9, 2009
Kidneys
Hello,
Sorry it's taken a while to post. The internet here wasn't working yesterday. Renee and I moved into a nice QUIET room on the NE wing of the hospital. She is doing really well and the doctors are wanting her to try to walk today. We have started her on a liquid diet and I think maybe some real food today too. She is practicing her breathing exercises and is coughing a little, which is good but hurts. No problems with the asthma.
I just visited my dad. Now they are being a bit more strict with the visiting hours 7-8am and 4-5 pm. I was sneaking in in between just to check on him, but now I guess I need to follow the rules. This morning the duty nurse told me that they may need to do dialysis on his kidneys. They are saying that my Dad's kidneys aren't responding very well and that they are retaining water so they may need to be drained. Last night he was talking a responsive- this morning he was really sleepy and it not very talkative. I told them to call me as soon as the doctors come and let me know what they decide and give me an update. He doesn't seem to be in any pain.
That's all I know for now. I'll write more once I know more.
Love,
Neysa
Sorry it's taken a while to post. The internet here wasn't working yesterday. Renee and I moved into a nice QUIET room on the NE wing of the hospital. She is doing really well and the doctors are wanting her to try to walk today. We have started her on a liquid diet and I think maybe some real food today too. She is practicing her breathing exercises and is coughing a little, which is good but hurts. No problems with the asthma.
I just visited my dad. Now they are being a bit more strict with the visiting hours 7-8am and 4-5 pm. I was sneaking in in between just to check on him, but now I guess I need to follow the rules. This morning the duty nurse told me that they may need to do dialysis on his kidneys. They are saying that my Dad's kidneys aren't responding very well and that they are retaining water so they may need to be drained. Last night he was talking a responsive- this morning he was really sleepy and it not very talkative. I told them to call me as soon as the doctors come and let me know what they decide and give me an update. He doesn't seem to be in any pain.
That's all I know for now. I'll write more once I know more.
Love,
Neysa
Wednesday, April 8, 2009
Update
It is Wednesday evening here and the nurses have told me that i am not allowed to visit until tomorrow morning, so I will post this blog and go get some sleep. They said they are probably going to move Renee to her own room tomorrow so I can come stay with her at the hospital. I just spent an hour with her, and she is totally coherent and not in any pain. She was pretty talkative and wanted to know what all of you had to say on the blog, so I tried to remember the best I could. The only complaint she had was that she was a little itchy from the morphine and had a fat lip. Oh yeah, she had a fat lip and we couldn't figure out how she got it. Her nurse doesn't speak any English so she was of no help. She asked the doctor if someone punched her to knock her out and he said that she hit him first. We had a good laugh and then he said that it was probably from the thing that they put in your mouth to insert the tube into her stomach.
My dad is doing pretty well. It's hard to tell because he is so groggy. When I visited him around 2 in the afternoon he was the best. He was answering my questions and smiling and joking a bit. I took a look at what I could see of his body and couldn't believe that he had no belly! "Where did it go?" I said. He laughed a bit. I don't think either of us expected it to be so flat. He looks like a new man. AMAZING!! His eyes lookeda little yellow, but overall he looked really good. I went back again around 6 and he was kind of out of it. I was rubbing his feet and he told me to "put the other tape in" he said "it feels good when you play the other tape". I couldn't tell what the heck he meant. But then when I asked him if he knew where he was from and he said "La-La land" I knew then that the "tape" he was wanting me to change was probably the music in his head. So tonight I'm making him a playlist with some of his favorite music so he can listen to something other than the heart rate monitor in his room tomorrow. Hopefully the nurses will be okay with that.
My dad is doing pretty well. It's hard to tell because he is so groggy. When I visited him around 2 in the afternoon he was the best. He was answering my questions and smiling and joking a bit. I took a look at what I could see of his body and couldn't believe that he had no belly! "Where did it go?" I said. He laughed a bit. I don't think either of us expected it to be so flat. He looks like a new man. AMAZING!! His eyes lookeda little yellow, but overall he looked really good. I went back again around 6 and he was kind of out of it. I was rubbing his feet and he told me to "put the other tape in" he said "it feels good when you play the other tape". I couldn't tell what the heck he meant. But then when I asked him if he knew where he was from and he said "La-La land" I knew then that the "tape" he was wanting me to change was probably the music in his head. So tonight I'm making him a playlist with some of his favorite music so he can listen to something other than the heart rate monitor in his room tomorrow. Hopefully the nurses will be okay with that.
Just talked to the doctor
I just spoke with Dr. Gupta and he said that the surgery went well. My dad was starting to respond and winked at me when I saw him. He was still pretty shakey like this morning. The nurses said they should be able to take the tube out of his mouth in a few hours. Dr. Gupta voiced his concern about his kidneys again. He has been concerned with his kidneys since before we started, but we will just have to see how it goes. I personally think that with a new liver it should take some of the strain off the kidneys but I'm not a professional.
I saw Renee this morning again and she said it felt like an elephant was standing on her chest. She said she wasn's in pain like last night but that it was hard to breathe and she was uncomfortable. She was pretty emotional and I could tell she had been crying. I'm sure today will be one of the worst days. I think the morphine makes her emotional too. But she too is doing well.
So keep up the prayers. I am staying here in case I can see one of them again before "visiting hours". I'll be online if anyone has Skype.
love,
Neysa
I saw Renee this morning again and she said it felt like an elephant was standing on her chest. She said she wasn's in pain like last night but that it was hard to breathe and she was uncomfortable. She was pretty emotional and I could tell she had been crying. I'm sure today will be one of the worst days. I think the morphine makes her emotional too. But she too is doing well.
So keep up the prayers. I am staying here in case I can see one of them again before "visiting hours". I'll be online if anyone has Skype.
love,
Neysa
Tuesday, April 7, 2009
Doctors just called me and Renee is doing well!
I watched the sunrise over New Delhi this morning knowing that it was the to be the first day of my dad's new life. I stayed at the hospital last night so I could be with my Dad and Renee before surgery. The nurses never let them sleep, they were in his room all night poking him with IV's and who knows what else. Renee had a new room on the 4th floor so I was running up and down to be with both of them. We started to prep around 4:30 am, Renee was cool and collected reading the last chapters of her book. She didn't even cry until I gave her a big hug and told her how proud I am of her and that dad is so thankful for her. Dad was joking around a bit, but I could tell he was still nervous. I walked each of them down individually gave them a big kiss and squeeze and watched them get wheeled away. Then I waited...
It's now 6:30 and I just received a phone call from the Doctor saying that Renee's surgery went really well and that I will be able to come see her within a half an hour!! Dad will be in surgery until around 1 am. I probably won't be able to see him until tomorrow morning.
So that's all the news I have for now. I will keep you posted as the night goes on.
Neysa
It's now 6:30 and I just received a phone call from the Doctor saying that Renee's surgery went really well and that I will be able to come see her within a half an hour!! Dad will be in surgery until around 1 am. I probably won't be able to see him until tomorrow morning.
So that's all the news I have for now. I will keep you posted as the night goes on.
Neysa
Monday, April 6, 2009
Less than 24 hours
Hi Everyone,
Well the countdown is on and we have been busy with last minute preparations. I will update the blog on your Tuesday morning (My Tues night) giving an update on the progress of their surgery. I should be able to talk to Renee by tomorrow evening. We just recorded a video that I think you will enjoy! We love you all and thanks again for you support!
Love,
Neysa, Renee and Dad
Well the countdown is on and we have been busy with last minute preparations. I will update the blog on your Tuesday morning (My Tues night) giving an update on the progress of their surgery. I should be able to talk to Renee by tomorrow evening. We just recorded a video that I think you will enjoy! We love you all and thanks again for you support!
Love,
Neysa, Renee and Dad
Saturday, April 4, 2009
2 Days Before Surgery
Friday night I was able to get a good nights rest because I stayed in the hotel with Neysa. She found a really cute hotel called the "Swiss Palms". It's pretty clean, spacious, cable TV, DVD player, and Internet. It's also in a gated community so there's not a lot of noise and traffic back there. Dad and I plan to stay there after we are released from the hospital.
Neysa and I went to dinner at the Thai place called Ego Thai. They have an Ego Italian and Ego Indian place as well. I also bought dad some coconut macaroons at a bakery that night because I know he loves them. The following day we went to the Lotus Temple. We had to take off our shoes before entering and then went single file into the temple. It was really amazing. I liked how the birds flew in there and their chirps would echo through the place. The temple is surrounded by water pools that make it look like it's floating.
As far as we know we are still on schedule for Tuesday. Dad is getting better and he is stable. I know everything happens for a reason and this was a blessing in disguise. He's been sleeping at night because the nurses don't have to come in every few hours. He has meds 2x per day after dinner and breakfast and that's it. Dad says he just wants to get the surgery over with.
Dr. Gupta gave us a book by Dr. Fredric D Gordon MD I wished I had a long time ago called "100 Questions & Answers About Liver Transplantation". I wished I would have had this book a long time ago, but didn't really think of looking for something like it. I breezed through it pretty quickly amazed at how much we already knew about the process. I read some parts to dad so he knows what to expect during and right after the surgery. His surgery is far more complex than mine.
My spirits are pretty good because I'm confident the procedures will go well. I just get a little saddened knowing that Miguel, mom and all my family are so far away and they are probably worried sick. So, don't worry because everything will be fine here. We have one of the best liver transplant teams working on us here. Just think-next week, this time we will be recovering quickly getting ready to come home. We are missing everyone at home and want to be back there as soon as we can.
XOXOXO to all!
As far as we know we are still on schedule for Tuesday. Dad is getting better and he is stable. I know everything happens for a reason and this was a blessing in disguise. He's been sleeping at night because the nurses don't have to come in every few hours. He has meds 2x per day after dinner and breakfast and that's it. Dad says he just wants to get the surgery over with.
Dr. Gupta gave us a book by Dr. Fredric D Gordon MD I wished I had a long time ago called "100 Questions & Answers About Liver Transplantation". I wished I would have had this book a long time ago, but didn't really think of looking for something like it. I breezed through it pretty quickly amazed at how much we already knew about the process. I read some parts to dad so he knows what to expect during and right after the surgery. His surgery is far more complex than mine.
My spirits are pretty good because I'm confident the procedures will go well. I just get a little saddened knowing that Miguel, mom and all my family are so far away and they are probably worried sick. So, don't worry because everything will be fine here. We have one of the best liver transplant teams working on us here. Just think-next week, this time we will be recovering quickly getting ready to come home. We are missing everyone at home and want to be back there as soon as we can.
XOXOXO to all!
Friday, April 3, 2009
Transplant Cafe
Now that we have some down time and my Internet is working well, I've been doing some research and wanted to share a site I found called Transplant Cafe. You can check it out here: http://transplantcafe.com/forum/topics/we-are-in-india-for-the
I really hope Liver Let Live will help uninsured people in the United States who feel their options have been exhausted. Please share Liver Let Live with as many people you know who are affected by family members needing transplants. Perhaps we can save more lives this way!
Wednesday, April 1, 2009
We're Going to be Indian Movie Stars!
Firs of all surgery has been postponed until next Tuesday but as we have learned, nothing is set in stone. So we are just patiently waiting.
For some reason my internet connection and connection with SKYPE has been impossible. I hope that will change. I'll ask today what the problem is. I'm borrowing a computer in the e-library today. There are Doctors waiting in line for everyone to finish here. So, I'll make this brief...
Yesterday a few reporters from an Indian tv station came in and interviewed us for a documentary they are doing on Medical Tourism. They asked dad a few questions and followed us down the hall for some "action" shots. Dad was hoping he wouldn't lose his pants (as he often does) while we were walking. He's gotten so skinny that there's nothing left to hold the pants up. I'm telling you, they need to make "maternity" pants for men. It might be helpful!
Anyways, after answering questions and walking down the hall for action shots dad took a nice nap. He says "it's hard being a movie star"! I gave the two reporter women my business cards and asked them to email me when the documentary becomes available. (I was hoping they would check out my Slumber Parties website too-I'll get some hits from India Kelly;)
We are reading your updates daily. Even though we can't log into the website to narrate we can still read it and make comments. Dad looks forward to hearing from everyone daily.
Subscribe to:
Posts (Atom)