All week there was talk about inserting a shunt into Jhonny's head but nothing happened. Then on Saturday afternoon we are told that he will have to go for another tomography (CT Scan). About 6 pm. I receive a phone call from the specialist saying that they will insert the shunt at 10:30 that night. Why on a Saturday night? We asked for the list of medications needed for the anesthesia but they did not have it ready. By the time we received it we had to rush to find everything since most of the pharmacies were closed. He did have the surgery and we were assured that things went well.
It is not Tuesday. And guess what? We are scheduled for another surgery today. It appears that the shunt is not working. From what I understand the body is producing protein which is forming globules that is plugging the shunt. It needs to be replaced. This is little Jhonny's fifth surgery in a month. How much more can his body and head take?
Wednesday, July 30, 2008
Saturday, July 26, 2008
Laying Jose Luis to Rest
How so I begin? How much do I say? What is important? All these questions go through my mind as I sit down to write. I did not know Jose Luis except to see him play while we helped build the church in Vibora. His dad is part of our Church Leaders' Group but I have only met him a few times since he was not always able to attend. And the biggest thing is that although I played a large part in this story I know that it was only the hand of God that put me there.
Jose Luis entered the Children's Hospital in a coma. He had already had a CT scan and his parents were told that he suffered an aneurysm The next day the diagnosis was changed to meningitis. Jose Luis remained in a deep coma and his brain no longer functioned. His face was chilly to the touch and his eyes were vacant. Wisely, the parents choose not to purchase medications so little by little Jose Luis faded away. The doctors wished to harvest his organs but that was not something that his parents could even contemplate. On Wednesday afternoon, Jose Luis blood pressure fell to such a level that the doctors were willing to remove the oxygen and declare him dead. As hard as that was, it was a relief that it was finally over. Once we knew the death was imminent, everything moved very quickly.
Although there are funeral services available in Bolivia, the family did not have the money or the inclination to purchase these services. Instead Julio, Jose Luis' father, and I went down the street and purchased the casket -- a simple white box with a small piece of glass so that the face could be viewed. Before we could take possession of the casket, we needed the death certificate. Back to the hospital. All the tubes and paraphernalia had been removed and Jose Luis was again dressed in his own clothes and his body was put on a gurney in the hall.
Back to the funeral home with the documentation. It is Bolivia but there are still some things that are not done -- you do not carry the casket down the street. Instead the men from the funeral home took it in their car to the hospital. In the meantime, there was an attempt to convince the family to have the body brought to the funeral home for embalming. Frankly, we told him they could do it but there was no money to pay them. Strangely, they did not force the issue.
One cannot leave the hospital until all the bills are paid so Julio was doing that while we were preparing the body and putting it in the coffin. He did not have enough money. Yes, the bed itself costs 120 bolivianos a day but one still has to pay for the oxygen and all the monitoring machines. The total bill with the discount still came to over 11oo bolivianos for four days.
The casket was taken out of the hospital and loaded into the back of the truck along with the other things we had purchased. Julio was quite anxious about being stopped at one of the check stops so we made sure that the casket was covered with a tarp and that there was enough other things in the truck so that there would be no need to be stopped.
After a short stop in Yapacani and other in Challavito we arrived at the church in Vibora where the coffin was placed in the church. No one had any experience with death or funerals so each event was discussed before it took place. The family wanted the body washed so that was the first step. That provided a good time to explain what had happened with the meningitis, what had happened to the body already and what would happen in the next day. After a time of worship it was time to rest. Many of the people simply slept in the church that night.
The next morning the men built the crypt for the coffin. This is a brick structure built above ground and the coffin in slipped in the mouth and then sealed with more bricks. When this was completed, dinner was served followed by a short service. Then the body was carried to the cemetery and placed in the crypt after a short service and prayer.
Bolivians do not show their sorrow or support in the way we are accustomed. The mother was sobbing, distraught, but no one 'comforted' her. No one except the parents cried although it was evident through their support that they cared. There was no touching, no hugging, no crying together. We hope that the community continues to support but we also have to remember that their view of death is in many ways more realistic than that of North Americans. We know that Julio's faith is strong and that certainly will carry them a long ways.
Jose Luis entered the Children's Hospital in a coma. He had already had a CT scan and his parents were told that he suffered an aneurysm The next day the diagnosis was changed to meningitis. Jose Luis remained in a deep coma and his brain no longer functioned. His face was chilly to the touch and his eyes were vacant. Wisely, the parents choose not to purchase medications so little by little Jose Luis faded away. The doctors wished to harvest his organs but that was not something that his parents could even contemplate. On Wednesday afternoon, Jose Luis blood pressure fell to such a level that the doctors were willing to remove the oxygen and declare him dead. As hard as that was, it was a relief that it was finally over. Once we knew the death was imminent, everything moved very quickly.
Although there are funeral services available in Bolivia, the family did not have the money or the inclination to purchase these services. Instead Julio, Jose Luis' father, and I went down the street and purchased the casket -- a simple white box with a small piece of glass so that the face could be viewed. Before we could take possession of the casket, we needed the death certificate. Back to the hospital. All the tubes and paraphernalia had been removed and Jose Luis was again dressed in his own clothes and his body was put on a gurney in the hall.
Back to the funeral home with the documentation. It is Bolivia but there are still some things that are not done -- you do not carry the casket down the street. Instead the men from the funeral home took it in their car to the hospital. In the meantime, there was an attempt to convince the family to have the body brought to the funeral home for embalming. Frankly, we told him they could do it but there was no money to pay them. Strangely, they did not force the issue.
One cannot leave the hospital until all the bills are paid so Julio was doing that while we were preparing the body and putting it in the coffin. He did not have enough money. Yes, the bed itself costs 120 bolivianos a day but one still has to pay for the oxygen and all the monitoring machines. The total bill with the discount still came to over 11oo bolivianos for four days.
The casket was taken out of the hospital and loaded into the back of the truck along with the other things we had purchased. Julio was quite anxious about being stopped at one of the check stops so we made sure that the casket was covered with a tarp and that there was enough other things in the truck so that there would be no need to be stopped.
After a short stop in Yapacani and other in Challavito we arrived at the church in Vibora where the coffin was placed in the church. No one had any experience with death or funerals so each event was discussed before it took place. The family wanted the body washed so that was the first step. That provided a good time to explain what had happened with the meningitis, what had happened to the body already and what would happen in the next day. After a time of worship it was time to rest. Many of the people simply slept in the church that night.
The next morning the men built the crypt for the coffin. This is a brick structure built above ground and the coffin in slipped in the mouth and then sealed with more bricks. When this was completed, dinner was served followed by a short service. Then the body was carried to the cemetery and placed in the crypt after a short service and prayer.
Bolivians do not show their sorrow or support in the way we are accustomed. The mother was sobbing, distraught, but no one 'comforted' her. No one except the parents cried although it was evident through their support that they cared. There was no touching, no hugging, no crying together. We hope that the community continues to support but we also have to remember that their view of death is in many ways more realistic than that of North Americans. We know that Julio's faith is strong and that certainly will carry them a long ways.
Tuesday, July 22, 2008
FRUSTRATION!
Anyone who knows me well will be wondering how I am even handling all this stuff that is out of my control. Today -- not very well.
Although the family made the decision to let Jose Luis die, the state has its laws and they are not willing to remove the oxygen. We went through this morning waiting and waiting. Finally a young doctor told us the same story -- his brain is not functioning etc, etc. Julio asked that the machines be removed and was told that the law does not allow that and we would have to wait another 48 hours. I asked for a meeting with the chief of ICU and he gave us the same story. I told him that the family did not know what to believe because we were told on Sunday that it would be Monday, on Monday that it would be today. I understood what was happening until the emotions came into play and they all talked more rapidly. From what we understood, the family could pay for the bed, then get something from the doctor, get some legal work done, and the machine would be removed. But reality was much different. When they removed the machine and Jose Luis started to gasp for air the mother said, "No, no" and the hospital took that as an indication that they did not want the machine removed. So we are back to square one. I am trying to get a translator for tomorrow so that I know what is happening and what needs to be done.
Although we don't want to be negative, it now seems like a money grab. The one doctor said we would have to wait 2 or 3 months because Jose Luis could come out of the coma! The cost of the bed with a discount is 120 bolivianos a day, not the 30 another family quoted. We are not sure if this is a true price or what is happening. We were also told that if we paid $110US we could get an EKG to prove that the brain was not working.
So tomorrow we begin over again.
Although the family made the decision to let Jose Luis die, the state has its laws and they are not willing to remove the oxygen. We went through this morning waiting and waiting. Finally a young doctor told us the same story -- his brain is not functioning etc, etc. Julio asked that the machines be removed and was told that the law does not allow that and we would have to wait another 48 hours. I asked for a meeting with the chief of ICU and he gave us the same story. I told him that the family did not know what to believe because we were told on Sunday that it would be Monday, on Monday that it would be today. I understood what was happening until the emotions came into play and they all talked more rapidly. From what we understood, the family could pay for the bed, then get something from the doctor, get some legal work done, and the machine would be removed. But reality was much different. When they removed the machine and Jose Luis started to gasp for air the mother said, "No, no" and the hospital took that as an indication that they did not want the machine removed. So we are back to square one. I am trying to get a translator for tomorrow so that I know what is happening and what needs to be done.
Although we don't want to be negative, it now seems like a money grab. The one doctor said we would have to wait 2 or 3 months because Jose Luis could come out of the coma! The cost of the bed with a discount is 120 bolivianos a day, not the 30 another family quoted. We are not sure if this is a true price or what is happening. We were also told that if we paid $110US we could get an EKG to prove that the brain was not working.
So tomorrow we begin over again.
Monday, July 21, 2008
Emotional Roller Coaster
The emotional roller coaster had me for a rider today. The incredible downs centered on little Jose Luis, the son of one of the members of the Leader's group I teach. His brain activity has not increased but the doctors are unable to disconnect him from the machines until 48 hours has elapsed. It has been a traumatic day for his parents, just seeing the shell of their son breathing and heart beating but no brain activity. Today they covered his eyes so we did not see the vacant look. We think that tomorrow they will disconnect machine and we will be able to take him to Vibora for his burial.
But then there are the good things -- things that are hard to celebrate when someone else is dying. Jhonny is starting to respond and we are sure that he is hearing us. When we talk his body starts to move and his head turns. We are not sure how much he hears but I told his dad to tell him all about the farm. His dad, his brothers and sister came into town today to visit their mom. It was a great treat for Erselia.
And then there is the highlight. We were blessed with another grand daughter. Although we cannot hold her and hug her we hear that her big sister is doing that for us.
But then there are the good things -- things that are hard to celebrate when someone else is dying. Jhonny is starting to respond and we are sure that he is hearing us. When we talk his body starts to move and his head turns. We are not sure how much he hears but I told his dad to tell him all about the farm. His dad, his brothers and sister came into town today to visit their mom. It was a great treat for Erselia.
And then there is the highlight. We were blessed with another grand daughter. Although we cannot hold her and hug her we hear that her big sister is doing that for us.
Sunday, July 20, 2008
Today was supposed to be a calm, quiet day. After church I spent some time eating lunch and reading my book, then stopped in the park and read some more. Erselia and I went for a leisurely walk through the park and looked at all the artisan stuff for sale at the market. We returned to the hospital about 3 pm. I noticed how my mood changed when we walked into the hospital -- more subdued, more depressed.
We arrived at the Intensive Care Unit and a man whom I recognized but could not place said ¨Hermana Margarita¨ (Sister Margaret). His wife was in tears and we learned that their son had been admitted to intensive care while we were for our walk. He had fallen off his bike on Thursday and he had a headache but nothing that serious. It became worse so they took him to the doctor in Vibora who called the local ambulance from the gas company and they transfered him to Yapacani. There he was intubated and sent off to Santa Cruz in an ambulance. He ended up in ICU, two beds down from Jhonny.
How I would like to tell you that things are well with Jose Luis but that is not so. The doctor told us that he had an aneurism in his head and that there is blood throughout his brain and into his body. The prognosis is not good. He is literally brain dead and is being kept alive with a respirator waiting for a specialist´s opinion -- the same doctor that operated on Jhonny. We were told that a normal brain rates 15, one in danger rates 7 or 8. Jose Luis is rated at 3. . His eyes do not move and his skin is cool. While we were there the doctor took off the machine and his breathing stopped. It is incredibly hard on the parents and the mother is very, very upset. I bought her a relaxant and she is now sleeping.
This is not what I had expected when I woke up this morning. But I am very grateful that I was in the place where I could help this family. Please add them to your prayer list.
We arrived at the Intensive Care Unit and a man whom I recognized but could not place said ¨Hermana Margarita¨ (Sister Margaret). His wife was in tears and we learned that their son had been admitted to intensive care while we were for our walk. He had fallen off his bike on Thursday and he had a headache but nothing that serious. It became worse so they took him to the doctor in Vibora who called the local ambulance from the gas company and they transfered him to Yapacani. There he was intubated and sent off to Santa Cruz in an ambulance. He ended up in ICU, two beds down from Jhonny.
How I would like to tell you that things are well with Jose Luis but that is not so. The doctor told us that he had an aneurism in his head and that there is blood throughout his brain and into his body. The prognosis is not good. He is literally brain dead and is being kept alive with a respirator waiting for a specialist´s opinion -- the same doctor that operated on Jhonny. We were told that a normal brain rates 15, one in danger rates 7 or 8. Jose Luis is rated at 3. . His eyes do not move and his skin is cool. While we were there the doctor took off the machine and his breathing stopped. It is incredibly hard on the parents and the mother is very, very upset. I bought her a relaxant and she is now sleeping.
This is not what I had expected when I woke up this morning. But I am very grateful that I was in the place where I could help this family. Please add them to your prayer list.
Saturday, July 19, 2008
Finally -- some answers
Every day seems to bring about more answers and more questions. This morning one of the doctors said that Jhonny appeared a little better but that there were still complications. We met with the specialist who said that although the fluid was draining, there is a possibility that there will need to be more surgery to insure that this drainage continues. They call it a ‘valvula’ and without internet connection, I have not been able to check on more information. Because the surgery sounds very serious I decided to get a second opinion.
However, there are times when I have doubts about what we have done. There is a chance that he will have one weak side and have vision problems. We still do not know how his brain will heal and if there is more damgage. If he is truly handicapped, what is his future in the campo? How will his parents care for him and the other five children? Will it be too much of a burden? How does anyone cope with this without faith?
Wednesday, July 16, 2008
One forward and two back or two forward and one back?
We were disappointed this morning to hear that Jhonny would undergo another surgery this afternoon. It was especially difficult for Erselia since many of the women talk about him not coming through this. It took some reassuring that this was not as major as the other surgeries and was only to drain some of the fluids. The specialist felt that it was better to put in another couple of tubes so that things would drain better. So it is back to Jhonny being under anesthesia and waiting for him to show response.
While Jhonny was in surgery two young doctors interviewed Erselia about Jhonny's medical history. Every time she tells it I learn more. The same day that she went in for a checkup for the baby, she took Jhonny along since he was getting worse. The doctor in La Pista had given him Milk of Magnesia but that didn't help. I wonder why? Then in Yapacani the doctor told her that they lived in dirty conditions with pigs and chickens and all Jhonny had was an infection. He didn't check him or order any tests. The lack of caring is almost too much to handle. It seems that if you live in the campo you are automatically (1) dumb and illiterate, (2) dirty, (3) have 'bichos', (4) not deserving of proper medical care.
I asked Erselia what was most important in the campo. (1) clean water. That can be solved by a simple filtration system using buckets and sand. (2) a good doctor. I am not sure we can do anything about that but I hope that we can increase awareness of illness - what is serious and what is not. Maybe a yearly medical team? Anyone willing to take that one on?
While Jhonny was in surgery two young doctors interviewed Erselia about Jhonny's medical history. Every time she tells it I learn more. The same day that she went in for a checkup for the baby, she took Jhonny along since he was getting worse. The doctor in La Pista had given him Milk of Magnesia but that didn't help. I wonder why? Then in Yapacani the doctor told her that they lived in dirty conditions with pigs and chickens and all Jhonny had was an infection. He didn't check him or order any tests. The lack of caring is almost too much to handle. It seems that if you live in the campo you are automatically (1) dumb and illiterate, (2) dirty, (3) have 'bichos', (4) not deserving of proper medical care.
I asked Erselia what was most important in the campo. (1) clean water. That can be solved by a simple filtration system using buckets and sand. (2) a good doctor. I am not sure we can do anything about that but I hope that we can increase awareness of illness - what is serious and what is not. Maybe a yearly medical team? Anyone willing to take that one on?
Tuesday, July 15, 2008
Improving!
Jhonny is improving. He is coughing and that means his body is working on its own. The fever is still a problem but something with which we will have to endure for now. Today we journeyed back to the 'rich' hospital for another tomography and it certainly looked better. Although there is still some fluid on the brain, the general pictures were very clear in comparison to last week. Things to be thankful for.
Being in the city can be pretty depressing, especially when you sit in the hospital around sick people and their families. Today Erselia and I went for a walk to a local supermarket four blocks from the hospital. I thought it would be a good place for her to know about and it only required one turn. Later she left to purchase diapers for Jhonny and I remained at the hospital reading my book. After an hour and a half I was a bit concerned that she had returned. When she finally came back she said she was lost but did find her way back. She is getting braver.
Being in the city can be pretty depressing, especially when you sit in the hospital around sick people and their families. Today Erselia and I went for a walk to a local supermarket four blocks from the hospital. I thought it would be a good place for her to know about and it only required one turn. Later she left to purchase diapers for Jhonny and I remained at the hospital reading my book. After an hour and a half I was a bit concerned that she had returned. When she finally came back she said she was lost but did find her way back. She is getting braver.
Monday, July 14, 2008
Small improvements
Jhonny is holding his own. Each day we see small improvements and I am happy to say that is off the respirator and is breathing on his own. His temperature is still a concern since it often is high. The doctor visits him daily and is saying that he is stable. Each day we pray for more improvement.
Friday, July 11, 2008
Finally -- A Better Day
The Condori family was having breakfast when I came to the hospital this morning -- buns and coffee. Erselia was crocheting a mat for a lady who has befriended her and we had a good visit. Jhonny is still not responsive although his body is moving more and the doctor says that he thinks Jhonny will respond in a day or so. The doctors and nurses are saying he is looking better before we ask so that is also a good sign.
This afternoon Erselia and I went to another health clinic to check on the status of her pregnancy. She had gone to the doctor in Yapacani but they were unwilling or unable to go any tests. She presented the documents at this clinic and came out with a big smile on her face and ultrasound pictures of the baby -- not that we could decipher anything. She was told that is was a mujercita -- a girl -- and that it would be born in 9 weeks. I am sure that she is the only women in the community who was a picture of the baby and knows already that it will be a girl.
After tough days it is wonderful to have this ray of sunshine -- a sign of God's love and grace.
This afternoon Erselia and I went to another health clinic to check on the status of her pregnancy. She had gone to the doctor in Yapacani but they were unwilling or unable to go any tests. She presented the documents at this clinic and came out with a big smile on her face and ultrasound pictures of the baby -- not that we could decipher anything. She was told that is was a mujercita -- a girl -- and that it would be born in 9 weeks. I am sure that she is the only women in the community who was a picture of the baby and knows already that it will be a girl.
After tough days it is wonderful to have this ray of sunshine -- a sign of God's love and grace.
Thursday, July 10, 2008
A Slow Road
Yesterday was another busy day. The first concern was to get Jhonny a 'catagoria'. This is a type of social assistance and we have been working on this since he arrived at the hospital but every day the lady says "Tomorrow." Finally, after a bit of persistance we finally received the correct papers and Jhonny now receives a lower rate on the lab work, the surgeries and his bed. Erselia was a bit perplexed when the lady told her that all ladies that wore polleras (the native skirt) could not read. The assumption is that if you wear native dress and live in the campo, you are automatically poor.
By the time that was all done and the medications purchased it was too late to bring the tumor to its new home.
At noon we were informed that Jhonny needed another tamography and, thanks to the teachers, we had a 3 p.m. appointment. Of course, that is Bolivian time so it was after 4 before we left since they had problems finding an oxygen bottle for the ambulance. We were thankful that for some reason the ride was free. While we were there the doctors asked if they could get a chest x-ray at the same time. The original price - $42US -- the final price 78 bolivianos or a little over $10.
This morning we finally were able to talk to the surgeon who informed us that the tumor was half the size of Jhonny's brain and that was the reason that recovery was taking so long. He says that Jhonny will be in 'a delicate state' for two or three more days and we won't know much until then.
I was very happy that the doctor talked to us since we were all feeling low. Since Sunday four children have died -- one ten year old and three babies. Erselia expressed this morning that it seems that only dead children came out of that ward. This morning was especially hard since the mother is single and was alone when she was told her baby died. It was a very hard couple of hours until her friends came. There is no type of grief counselling and the staff just walk passed looking straight ahead. It is the other people with children in intensive care that end up helping and supporting.
Every day I am thankful for the health care system we have. You have no idea what it is like to have to pay for every little thing before something can be done. But on the other hand, the public system is not always the cheapest. I brought the tumor to its new home today -- a private lab that will have the results quicker than the public system. The price was 100 bolivianos cheaper at the private lab -- you just never know!
By the time that was all done and the medications purchased it was too late to bring the tumor to its new home.
At noon we were informed that Jhonny needed another tamography and, thanks to the teachers, we had a 3 p.m. appointment. Of course, that is Bolivian time so it was after 4 before we left since they had problems finding an oxygen bottle for the ambulance. We were thankful that for some reason the ride was free. While we were there the doctors asked if they could get a chest x-ray at the same time. The original price - $42US -- the final price 78 bolivianos or a little over $10.
This morning we finally were able to talk to the surgeon who informed us that the tumor was half the size of Jhonny's brain and that was the reason that recovery was taking so long. He says that Jhonny will be in 'a delicate state' for two or three more days and we won't know much until then.
I was very happy that the doctor talked to us since we were all feeling low. Since Sunday four children have died -- one ten year old and three babies. Erselia expressed this morning that it seems that only dead children came out of that ward. This morning was especially hard since the mother is single and was alone when she was told her baby died. It was a very hard couple of hours until her friends came. There is no type of grief counselling and the staff just walk passed looking straight ahead. It is the other people with children in intensive care that end up helping and supporting.
Every day I am thankful for the health care system we have. You have no idea what it is like to have to pay for every little thing before something can be done. But on the other hand, the public system is not always the cheapest. I brought the tumor to its new home today -- a private lab that will have the results quicker than the public system. The price was 100 bolivianos cheaper at the private lab -- you just never know!
Tuesday, July 08, 2008
A better day
Jhonny appears better today. Erselia said that he had a tough night, running a high fever. She bathed him with cool cloths until 1 or 2 in the morning. His breathing seemed a bit labored earlier today but now it was more normal. His blood pressure is also normal.
But a day could not go by without some excitement. This morning I had to bring the tumor sample to the cancer hospital. The tumor was in a plastic container and I didn't look at it that well. A block from the hospital we hit a bump -- and the bottom part of the container slid from the top part, which was in my hand. The tumor and all the liquid fell to the floor of the taxi. What to do but scoop the tumor up, jump out of the taxi , run back into the hospital and request that they please replace the liquid. Thankfully they could do that and I proceeded to the cancer hospital -- only to find that it is a holiday (Medical Day? Day for Doctors and Nurses?) and many of the personal at the hospitals were off. So, again, I returned back to the Children's Hospital with the tumor and will bring it back again tomorrow.
We still haven't been able to get Jhonny on Social Assistance so we will try that again tomorrow. I might have to get my girlfriend to help since she speaks Spanish much better than I do.
But a day could not go by without some excitement. This morning I had to bring the tumor sample to the cancer hospital. The tumor was in a plastic container and I didn't look at it that well. A block from the hospital we hit a bump -- and the bottom part of the container slid from the top part, which was in my hand. The tumor and all the liquid fell to the floor of the taxi. What to do but scoop the tumor up, jump out of the taxi , run back into the hospital and request that they please replace the liquid. Thankfully they could do that and I proceeded to the cancer hospital -- only to find that it is a holiday (Medical Day? Day for Doctors and Nurses?) and many of the personal at the hospitals were off. So, again, I returned back to the Children's Hospital with the tumor and will bring it back again tomorrow.
We still haven't been able to get Jhonny on Social Assistance so we will try that again tomorrow. I might have to get my girlfriend to help since she speaks Spanish much better than I do.
Monday, July 07, 2008
More Surgeries
I came to the hospital this morning to find that Jhonny was scheduled for surgery again this morning. Because there was fluid and swelling on the brain. It was another six hours in surgery and we really have no idea what is going on. All we know is that they used one more unit of blood and three of plasma. It has been a very hard day on both myself and Erselia.
Today I brought the sample of the tumor to the other hospital and tomorrow I need to do the same with the samples from today's operation. It will be ten days before we get the results.
Sunday, July 06, 2008
One Tough Day
I expected that today would be an easy one with Jhonny resting comfortably. Another dream in Technicolor. Jake arrived this morning and we went to church and then to the hospital. We planned to stop to say hello and then go out for lunch and have some time together. Another dream in Technicolor! We arrived to find that new tomographies were needed and Jhonny would be taken to another hospital for these -- but they needed our approval since we would pay the bill. So instead of going out for lunch I viewed the procedure in a very upscale private hospital. The technician said that he could not see much since there was too much swelling and blood. This, however, means that Jhonny will undergo surgery again tomorrow to relieve the swelling and remove some of the liquids. We also noticed that his breathing is very labored and that causes some concern.
We probably would take this more in stride except that another 10 year old boy died today in ICU. He had had a tumor removed two weeks ago. The whole concept of death here is much more 'matter of fact'. The boy died and within a short time all the tubes were removed from the body and they put underpants on him rather than a diaper. Then he was wheeled into the hallway. Within less than ten minutes male members of the family arrived with a coffin and the body was placed in it. The men then carried out the coffin through the front exit of ICU and placed it in a station wagon. Along with the coffin went the candles, lamps, etc. that they use for Catholic funerals. We are not sure if they went directly to the cemetery or to a church. Everything was over at the hospital within half and hour and other baby was in the space.
This whole incident affected both Erselia and me and it does make me more apprehensive about tomorrow's surgery. We ask for all you prayers tonight and tomorrow.
We probably would take this more in stride except that another 10 year old boy died today in ICU. He had had a tumor removed two weeks ago. The whole concept of death here is much more 'matter of fact'. The boy died and within a short time all the tubes were removed from the body and they put underpants on him rather than a diaper. Then he was wheeled into the hallway. Within less than ten minutes male members of the family arrived with a coffin and the body was placed in it. The men then carried out the coffin through the front exit of ICU and placed it in a station wagon. Along with the coffin went the candles, lamps, etc. that they use for Catholic funerals. We are not sure if they went directly to the cemetery or to a church. Everything was over at the hospital within half and hour and other baby was in the space.
This whole incident affected both Erselia and me and it does make me more apprehensive about tomorrow's surgery. We ask for all you prayers tonight and tomorrow.
Saturday, July 05, 2008
A Day in Surgery
The alarm went off early and off I went back to the hospital. Filipe was trying the bathe Jhonny and shave his head for surgery. His hair off in bits and pieces and Jhonny was crying so I took over that part of the job. It is hard when there is no assistance. Soon Jhonny was tucked back into a warm blanket and off to surgery.
The surgery lasted seven hours. There is not a lot said but they used three more units of blood than they had planned. The good thing is that they just used them and didn't get us to pay for them first. I would have had to change some money and that could have been a crucial delay. The majority of the tumor was removed but they were unable to get it all. After surgery I was presented with two vials with parts of the tumor which I brought to the cancer hospital across town. They were not receiving items until Monday morning --what do I do with tumor parts? Thankfully the hospital took them back and is storing them until Monday morning.
Jhonny was resting quietly when I left. Not that that says much. He was very drugged and these Bolivians don't show it when they are pale.
In the Bolivian hospitals there are many ladies from different churches talking to the patients and their families. One befriended Filipe and Ersilia and they stayed at her place last night. It is great that they have a place to go instead of a hotel room.
Thank you for all the prayers. I will post pictures when I get them off my camera
Thursday, July 03, 2008
Adventures of the Medical System
Today was a calm day -- waiting for the operation tomorrow morning. Filipe, Ersilia and Daimer slept at the hospital last night. They joined all the other families sleeping on the floor in the hallway.
Bolivia does have a type of social assistance for the poor. DAVASON provides medicine in exchange for a donation. That was the way we purchased the medications today. It turns out that we paid more for them through the donation that had I purchased them at the pharmacy. Because you do not know the value of the product the donation may be too much or too little. However, this program subsidizes the beds so we will be paying 25 bolivianos per night instead of 50.
Today I calculated all the expenses I have incurred so far. It comes to 4251 bolivianos or just under $600. Imagine that the average wage in the campo is 35 bolivianos a day. Already we have spent 121.5 days of wages! Compare that to earnings of $100 a day and we have spent the equivilant of $12,150 dollars.
Bolivia does have a type of social assistance for the poor. DAVASON provides medicine in exchange for a donation. That was the way we purchased the medications today. It turns out that we paid more for them through the donation that had I purchased them at the pharmacy. Because you do not know the value of the product the donation may be too much or too little. However, this program subsidizes the beds so we will be paying 25 bolivianos per night instead of 50.
Today I calculated all the expenses I have incurred so far. It comes to 4251 bolivianos or just under $600. Imagine that the average wage in the campo is 35 bolivianos a day. Already we have spent 121.5 days of wages! Compare that to earnings of $100 a day and we have spent the equivilant of $12,150 dollars.
Wednesday, July 02, 2008
Another Day in the Hospital
Filipe and Samuel left this morning for Yapacani. Erselia took the micro from Patujusal to Yapacani. From there Samuel would return home while Filipe and Erselia returned to Santa Cruz. Although I arrived at the hospital at 9, I was informed that I could not sit with Jhonny since I was not his family. Instead I purchased the items for the anesthesiologist. That took until 12:30! Of course, another list was added. I fed Jhonny his lunch and had to leave until 3.
It was good to see the change in Jhonny. He was able to sit up for about 30 seconds before he would loose his balance. That doesn’t seem like much but yesterday he did not have the energy to lift his body off the bed. His appetite returned and he ate all his lunch – after I went across the street to get a spoon so that he didn’t have to eat with his fingers. His speech has returned and the constant questions were "What time is it?" and "When is Daddy coming back?" However, his depth perception has been affected so he has trouble getting the food to his mouth and when he pointed at something, he could not do it.
Another medical system quirk. One has to pay to use blood and it is not cheap by Bolivian standards -- 250 bolivianos or a little over $60 a unit. But before the surgery can be done, one of the parents much donate the units back into the bank. So we purchased 3 units of blood and Filipe must donate 3 units back. He did not do that before he left so surgery is delayed one day.
The items I purchased today were much more expensive than those purchased yesterday. One realizes how the poor simply cannot afford to have these type of operations performed. I changed $500 this morning and the majority of it was used to purchase medication and supplies.
And we complain about our medical system?
Medical System
Last April one of the ladies from the community asked me if I would take her son to the doctor in Santa Cruz. He had been suffering from headaches for the past two years and he had a soft spot on his head. The first doctor wrote a note explaining that she felt the situation was urgent and that she thought Jhonny had a tumor in his head. After looking at the X-rays the doctor at the Children’s Hospital said that yes, there might be a tumor but the biggest problem was ‘bichos’ – the catch all phrase for all worms and insects. Erselia and Jhonny returned home and life went on as normal – or so I thought.
On Saturday the teachers asked what had we had found out about Jhonny – he hadn’t been back to school and his brother said that he was not walking or talking. I talked to an aunt but she knew nothing. However, early the next morning her husband biked over the Erselia’s and found Jhonny in bed. He could no longer walk without assistance and was barely talking. Erselia came to church to ask for prayers for Jhonny so after the church service all the members went to the house since Jhonny could not be moved easily. Jhonny was responsive but very tired. On his head there was a soft spot that felt mushy and his face appeared slightly larger than usual. He was running a low grade fever, had problems with vomiting and incontinence.
3:30 am on Monday Jhonny, his brother Samuel, his father Filipe and I headed to Santa Cruz with all the documentation of the previous visit. We arrived at Mision de Esperanza, a hospital operated by a group from USA. They were unable to help but contacted a neurologist who would meet us, even though it was not his clinic day. He, in turn, sent us off to another clinic where a tomography was taken. By this time, little Jhonny was tired and the only way he could move was if someone carried him. I never thought I would be able to carry a 10 year old boy. Since we would not see the neurologist until 6:30 p.m., the family rested in a little hotel for a few hours. The neurologist informed us that there was a large tumor in Jhonny’s head but we needed to come to the Children’s Hospital the next morning to determine a course of action.
Tuesday morning Jhonny was admitted to the hospital for an assessment. This was 8:30. Finally at 3:30 he had a bed. We had an interesting day in the emergency part of the hospital and I learned a lot. If you need a splint, make one from cardboard. The lack of efficiency is directly related to the amount of paperwork. Nothing can be done until payment is made. The patient buys everything for the treatment – except the cardboard!
First you get a number, go to the cashier, and pay the amount needed for the initial consultation. Then you go back to see the doctor. If there is lab work needed, you go back to the cashier and pay another amount. This lab work is done. Then some more lab work needs to be done. Back to the cashier so that it can be done.
A list two pages long contains all the items needed for the surgery. Off to the pharmacies along the street to buy everything from the saline solutions to the thread for the stitches. Back to the hospital to find another list of items that need to be purchased – and then another list. Finally, we are done and Jhonny is given a room in the ward. Imagine the hospitals 40 or more years ago – an open room with 10 beds. The parent stays to help and only one visitor is allowed. No children are allowed to visit and the visiting hours are strictly enforced. Before we left for the night, I received another two pages list of items needed for the anesthesiologist.
Last April one of the ladies from the community asked me if I would take her son to the doctor in Santa Cruz. He had been suffering from headaches for the past two years and he had a soft spot on his head. The first doctor wrote a note explaining that she felt the situation was urgent and that she thought Jhonny had a tumor in his head. After looking at the X-rays the doctor at the Children’s Hospital said that yes, there might be a tumor but the biggest problem was ‘bichos’ – the catch all phrase for all worms and insects. Erselia and Jhonny returned home and life went on as normal – or so I thought.
On Saturday the teachers asked what had we had found out about Jhonny – he hadn’t been back to school and his brother said that he was not walking or talking. I talked to an aunt but she knew nothing. However, early the next morning her husband biked over the Erselia’s and found Jhonny in bed. He could no longer walk without assistance and was barely talking. Erselia came to church to ask for prayers for Jhonny so after the church service all the members went to the house since Jhonny could not be moved easily. Jhonny was responsive but very tired. On his head there was a soft spot that felt mushy and his face appeared slightly larger than usual. He was running a low grade fever, had problems with vomiting and incontinence.
3:30 am on Monday Jhonny, his brother Samuel, his father Filipe and I headed to Santa Cruz with all the documentation of the previous visit. We arrived at Mision de Esperanza, a hospital operated by a group from USA. They were unable to help but contacted a neurologist who would meet us, even though it was not his clinic day. He, in turn, sent us off to another clinic where a tomography was taken. By this time, little Jhonny was tired and the only way he could move was if someone carried him. I never thought I would be able to carry a 10 year old boy. Since we would not see the neurologist until 6:30 p.m., the family rested in a little hotel for a few hours. The neurologist informed us that there was a large tumor in Jhonny’s head but we needed to come to the Children’s Hospital the next morning to determine a course of action.
Tuesday morning Jhonny was admitted to the hospital for an assessment. This was 8:30. Finally at 3:30 he had a bed. We had an interesting day in the emergency part of the hospital and I learned a lot. If you need a splint, make one from cardboard. The lack of efficiency is directly related to the amount of paperwork. Nothing can be done until payment is made. The patient buys everything for the treatment – except the cardboard!
First you get a number, go to the cashier, and pay the amount needed for the initial consultation. Then you go back to see the doctor. If there is lab work needed, you go back to the cashier and pay another amount. This lab work is done. Then some more lab work needs to be done. Back to the cashier so that it can be done.
A list two pages long contains all the items needed for the surgery. Off to the pharmacies along the street to buy everything from the saline solutions to the thread for the stitches. Back to the hospital to find another list of items that need to be purchased – and then another list. Finally, we are done and Jhonny is given a room in the ward. Imagine the hospitals 40 or more years ago – an open room with 10 beds. The parent stays to help and only one visitor is allowed. No children are allowed to visit and the visiting hours are strictly enforced. Before we left for the night, I received another two pages list of items needed for the anesthesiologist.
Are we still at the end of the World?
There are times when we become frustrated with the lack of ability to get things done. And then everything happens at once. We purchased a tower for the cell phone but were unable to raise it since we did not have the manpower. It is difficult to do such a project when you are unable to give the proper instructions in Spanish. Thanks to all the muscles of the group from Texas – and their understanding of what needed to be done – the tower is now standing and we have reception on the cell phone. However, we are so used to living without a phone that we don’t remember to turn it on! With the purchase of an additional cell phone Jake will have the advantage of being able the call me and give me his shopping list when I am in the city.
Our new friend Lucy
Is it a swimming pool? And who is Lucy? Everything needs a name so our new venture was named Lucy by Candice, a friend from Canada. 
At this point all the workers left. Dana and Candice returned to Canada
Back in January we started another project – water storage. However, after a few days our helpers found other things to do and the work halted. (Did I ever say that patience is something you learn when you live here?) For months we had a large structure about 5.5 meters in diameter and about a meter high sitting in the yard. When neighbours came they questioned us about our swimming pool. That we were building a large water storage tank was a bit more than they understood.
In May, with the help of Dana and Candice, a couple of Canada
Using the advice of our cousin who built similar structures in
At this point all the workers left. Dana and Candice returned to Jake needs to complete the spouts to the tank and the cover. Then we wait for the rain. When the tank is filled we should enough water with pressure for the house and even be able to water the plants – with a hose rather than a bucket! All we need is a bit more patience for the rains to come – but we are more than willing to wait for that.
And then there is even more water.
A fellow missionary, Daniel Beams, works with well drilling projects. One of his groups, a team from
The first well, 12 meters deep, produced lots of iron laden water. A second well, 50 meters deep, gives iron free water. We are sending some to be tested to ensure that it is drinkable without further filtering.
The team also drilled one well in Tarumá, the neighbouring community. Carlos, the well driller that work with the teams, will continue to drill well with the men of the community over the next month.
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