Hello everyone,
It is so great to be back home. We are getting back into the old routine again. Derek has been having a lot of evaluations again to get services started again. Thank you to Jill Glover for coming over Friday to start working with Derek cognitively again. She is having Derek try to remember as much as he can about the month in China and then he will write a report about it. Hopefully when he gets it done, we will be able to post it on the blog so that you can all read about what he remembers.
We did find out what the white mass on the MRI was. When they implanted Derek's bone marrow stem cells at the time of the surgery, they put them in a glue like substance to adhere them to the spinal cord. The purpose of this is to give them a better chance to be absorbed directly into the spinal cord instead of just be flushed through his system.
Derek has not seen any changes yet, but they say to allow six months to see any changes. Time will tell.
Thank you for all your continued thoughts and prayers.
Kathy and Derek
Monday, February 25, 2008
Tuesday, February 12, 2008
Update 2/12/08
Hi,
We made it home safe and sound. It was an extremely long trip. I am running on a couple of hours sleep, but Derek got 12 hours of sleep after we got home. On the 13 1/2 hour flight, Derek got a row with three seats so he got to lay down and sleep a lot of the flight. I am trying to stay up all day so hopefully I will be able to sleep tonight. It will probably take us a couple days to change our internal clocks back the 13 hour difference. I've got the months worth of mail sorted, the suitcases unloaded and the laundry started. Getting caught up will take a few days, I'm sure.
We are looking forward to a dinner of meat, potatoes and vegetable tonight and being able to sit at a table and chairs to eat. We got a very warm greeting from the two dogs last night when we got home. Lots of kisses. Thanks again for everyone's support.
Love, Kathy and Derek
We made it home safe and sound. It was an extremely long trip. I am running on a couple of hours sleep, but Derek got 12 hours of sleep after we got home. On the 13 1/2 hour flight, Derek got a row with three seats so he got to lay down and sleep a lot of the flight. I am trying to stay up all day so hopefully I will be able to sleep tonight. It will probably take us a couple days to change our internal clocks back the 13 hour difference. I've got the months worth of mail sorted, the suitcases unloaded and the laundry started. Getting caught up will take a few days, I'm sure.
We are looking forward to a dinner of meat, potatoes and vegetable tonight and being able to sit at a table and chairs to eat. We got a very warm greeting from the two dogs last night when we got home. Lots of kisses. Thanks again for everyone's support.
Love, Kathy and Derek
Sunday, February 10, 2008
Update 2/10/08
Hello,
We are pretty well packed and waiting for 8:00 when they turn the hot water on so we can all shower and go to bed as we are leaving to early to get hot water in the morning. Tony is taking us to the airport at 7 am. We have 31 hours of traveling before we will be home. This has been an amazing journey. We would like to thank everyone who helped make this possible for Derek and all of you who have followed us by way of the blog. We will continue to pray that Derek will see some positive results in the months ahead. Whatever the outcome, at least we can say that we tried. We’ll write again after we get home.Love to all, Derek, Kathy and Nicole
We are pretty well packed and waiting for 8:00 when they turn the hot water on so we can all shower and go to bed as we are leaving to early to get hot water in the morning. Tony is taking us to the airport at 7 am. We have 31 hours of traveling before we will be home. This has been an amazing journey. We would like to thank everyone who helped make this possible for Derek and all of you who have followed us by way of the blog. We will continue to pray that Derek will see some positive results in the months ahead. Whatever the outcome, at least we can say that we tried. We’ll write again after we get home.Love to all, Derek, Kathy and Nicole
Saturday, February 9, 2008
Update 2/9/08
Hello,
Our time here in Shenyang is drawing to a close. We are now counting hours not days. Tomorrow we will pack up and be ready to leave for the airport early Monday morning.
Derek had some therapy today and more IVs. He had his last spinal cord stem cell injection this afternoon at 4:00. He has to lie still for four to six hours now to avoid a spinal headache.
We got the copies of the MRI images that were taken yesterday. Tony read us the Doctor’s report that said that there were no changes from the MRI that was taken after we arrived. This immediately sent my head into a tail spin. I needed more information to rationalize why we had had the surgery in the first place. I questioned Tony and Lucy about having Derek’s surgeon look at them and was told that he was on vacation for the holiday and would not be back until Feb. 12th after we had left. I dug deeper to find out if there was a Doctor on call who could compare the two MRIs. Lucy found a Doctor downstairs who said that he would look at them, so Lucy, Nicole and I headed down with images in hand. We were told that the cyst and adhesion were gone, but there was a white mass pushing on his spinal cord. We were told that this was the bone marrow stem cells that were injected at the time of the surgery. The Doctor said that they are not nerve cells when they are injected and that with time they would either turn to nerve cells or die. He said to have a follow up MRI done in three months. He showed us where there was little spinal fluid around his cord and said that there was swelling of the cord. We knew about the swelling factor after surgery from what we had learned after Derek’s initial surgery after the accident. I have already been on the internet emailing another Doctor to get more information about the stem cell mass, why the stem cells aren’t absorbed into the blood stream, and where in the United States do we go for a follow up MRI where the Doctors will be familiar with stem cell procedures and be able to evaluate the three MRIs.
On a more positive note: Another American patient who has a spinal cord injury from a gun shot wound was transferred here from another hospital in China where he had had stem cell treatments for a month and then came here for surgery, is already seeing his leg move. The one thing to remember is that everyone’s spinal cord injury is at a different level, different severity, and they are at different time frames out from their injuries. Any improvements are a big boost to all the patients and families.
We said good bye to Lucy today. She has the next three days off to celebrate the holiday with her family. She was a big help to us and was a delight to be around. She will be missed around here the next couple of days.
We’ll write again tomorrow before we start our journey back to the states.
Love to all, Derek, Nicole and Kathy
Our time here in Shenyang is drawing to a close. We are now counting hours not days. Tomorrow we will pack up and be ready to leave for the airport early Monday morning.
Derek had some therapy today and more IVs. He had his last spinal cord stem cell injection this afternoon at 4:00. He has to lie still for four to six hours now to avoid a spinal headache.
We got the copies of the MRI images that were taken yesterday. Tony read us the Doctor’s report that said that there were no changes from the MRI that was taken after we arrived. This immediately sent my head into a tail spin. I needed more information to rationalize why we had had the surgery in the first place. I questioned Tony and Lucy about having Derek’s surgeon look at them and was told that he was on vacation for the holiday and would not be back until Feb. 12th after we had left. I dug deeper to find out if there was a Doctor on call who could compare the two MRIs. Lucy found a Doctor downstairs who said that he would look at them, so Lucy, Nicole and I headed down with images in hand. We were told that the cyst and adhesion were gone, but there was a white mass pushing on his spinal cord. We were told that this was the bone marrow stem cells that were injected at the time of the surgery. The Doctor said that they are not nerve cells when they are injected and that with time they would either turn to nerve cells or die. He said to have a follow up MRI done in three months. He showed us where there was little spinal fluid around his cord and said that there was swelling of the cord. We knew about the swelling factor after surgery from what we had learned after Derek’s initial surgery after the accident. I have already been on the internet emailing another Doctor to get more information about the stem cell mass, why the stem cells aren’t absorbed into the blood stream, and where in the United States do we go for a follow up MRI where the Doctors will be familiar with stem cell procedures and be able to evaluate the three MRIs.
On a more positive note: Another American patient who has a spinal cord injury from a gun shot wound was transferred here from another hospital in China where he had had stem cell treatments for a month and then came here for surgery, is already seeing his leg move. The one thing to remember is that everyone’s spinal cord injury is at a different level, different severity, and they are at different time frames out from their injuries. Any improvements are a big boost to all the patients and families.
We said good bye to Lucy today. She has the next three days off to celebrate the holiday with her family. She was a big help to us and was a delight to be around. She will be missed around here the next couple of days.
We’ll write again tomorrow before we start our journey back to the states.
Love to all, Derek, Nicole and Kathy
Friday, February 8, 2008
Update 2/8/08
Xie Nian Kuai Le (Happy New Year),
The celebration is continuing here along with the fireworks. There is one therapist on duty during the holiday. Derek had therapy twice today. He had an MRI this afternoon to have a comparison of his spinal cord before and after the surgery. We will get the films back tomorrow. Tonight when he was getting his IV in his foot, the fluid stopped dripping. The nurse was trying to figure out what was wrong and determined that the needle had moved and she would have to put a new one in. The positive side of this was that Derek said that he felt pain in his foot, like throbbing. This is a new and positive feeling. He has also been sweating a lot since his surgery and the stem cells. We have heard from several people that this is a positive sign also. Paul had also commented about how much more he sweated after his surgery and stem cells and he gained movement in one of his feet while he was here. We are keeping an upbeat attitude that these are positive signs that the stem cells are working to gain nerve regeneration.
We are getting excited about coming home in a couple of days. We will arrive back home around midnight on Tuesday.
Love, Derek, Nicole and Kathy
The celebration is continuing here along with the fireworks. There is one therapist on duty during the holiday. Derek had therapy twice today. He had an MRI this afternoon to have a comparison of his spinal cord before and after the surgery. We will get the films back tomorrow. Tonight when he was getting his IV in his foot, the fluid stopped dripping. The nurse was trying to figure out what was wrong and determined that the needle had moved and she would have to put a new one in. The positive side of this was that Derek said that he felt pain in his foot, like throbbing. This is a new and positive feeling. He has also been sweating a lot since his surgery and the stem cells. We have heard from several people that this is a positive sign also. Paul had also commented about how much more he sweated after his surgery and stem cells and he gained movement in one of his feet while he was here. We are keeping an upbeat attitude that these are positive signs that the stem cells are working to gain nerve regeneration.
We are getting excited about coming home in a couple of days. We will arrive back home around midnight on Tuesday.
Love, Derek, Nicole and Kathy
Thursday, February 7, 2008
Update 2/7/08
Xie Nian Kuai Le (Happy New Year),
The fireworks are still going on. Last night was one continual bang. We videotaped them to try to show people at home what it was like. Midnight had the most. They were everywheres you looked. Within five minutes after midnight, you could not even see the ones closest to us because of the smoke in the air, but the noise continued. Around 10:30 last night, the one nurse who was on duty and Chicken Little, who is Gregg’s Chinese caregiver, brought us in dumplings. They were good. We looked up on the internet and found that dumplings are the traditional food to celebrate the New Year in northern China.
The only thing that went on today was Derek getting his bandage changed and receiving IV fluids. Lucy brought us fried dumplings today for lunch. She told us about how she celebrated the New Year. She told us that all her relatives gather at her grandmother’s house. She and some of relatives spent three or four hours making dumplings, some watched TV, some play cards, and then they all go out side to set off their fireworks. We had read on the internet that is custom for the children to stay up all night so that the parents will have a long life. We asked Lucy if she had and she said that she had and was very tired today. She is going to bring us more dumplings tomorrow. They were some of the best that we have had here. Tomorrow will be the last day that we will see Lucy as she has the last three days that we are here off for the holiday.
We are counting the days until we return home. Thanks to everyone for the love, support, prayers, emails and comments. They have helped us get through this leg of Derek’s Journey.
Love, Derek, Nicole and Kathy
The fireworks are still going on. Last night was one continual bang. We videotaped them to try to show people at home what it was like. Midnight had the most. They were everywheres you looked. Within five minutes after midnight, you could not even see the ones closest to us because of the smoke in the air, but the noise continued. Around 10:30 last night, the one nurse who was on duty and Chicken Little, who is Gregg’s Chinese caregiver, brought us in dumplings. They were good. We looked up on the internet and found that dumplings are the traditional food to celebrate the New Year in northern China.
The only thing that went on today was Derek getting his bandage changed and receiving IV fluids. Lucy brought us fried dumplings today for lunch. She told us about how she celebrated the New Year. She told us that all her relatives gather at her grandmother’s house. She and some of relatives spent three or four hours making dumplings, some watched TV, some play cards, and then they all go out side to set off their fireworks. We had read on the internet that is custom for the children to stay up all night so that the parents will have a long life. We asked Lucy if she had and she said that she had and was very tired today. She is going to bring us more dumplings tomorrow. They were some of the best that we have had here. Tomorrow will be the last day that we will see Lucy as she has the last three days that we are here off for the holiday.
We are counting the days until we return home. Thanks to everyone for the love, support, prayers, emails and comments. They have helped us get through this leg of Derek’s Journey.
Love, Derek, Nicole and Kathy
Wednesday, February 6, 2008
Update 2/6/08
Hello Everyone,
Xin Nian Kuai Le (Happy New Year!)
Derek had two physical therapy sessions this morning so that the one therapist that was on could catch the train at noon to go home for the holiday. Lucy and Tony are taking turns working three days and having three days off for the holiday. Even though the fireworks have been going on day and night for a week and a half already, tonight is the big night. They will go all night, but midnight is supposed to the highlight. We will watch them in a circular room near the stairs, because of the panoramic view that we will have. We will be able to sleep in tomorrow morning because there will be nothing going on.
We received an email requesting the address for Key Bank:
Derek O’Brien Trust
Key Bank
141 Elm Street
Camden, ME 04843
Love, Derek, Nicole and Kathy
Xin Nian Kuai Le (Happy New Year!)
Derek had two physical therapy sessions this morning so that the one therapist that was on could catch the train at noon to go home for the holiday. Lucy and Tony are taking turns working three days and having three days off for the holiday. Even though the fireworks have been going on day and night for a week and a half already, tonight is the big night. They will go all night, but midnight is supposed to the highlight. We will watch them in a circular room near the stairs, because of the panoramic view that we will have. We will be able to sleep in tomorrow morning because there will be nothing going on.
We received an email requesting the address for Key Bank:
Derek O’Brien Trust
Key Bank
141 Elm Street
Camden, ME 04843
Love, Derek, Nicole and Kathy
Tuesday, February 5, 2008
Update 1/5/08
Hello Everyone,
Derek got to go to acupuncture yesterday, but not therapy because he still had his stitches. He got another spinal cord stem cell injection last night.
Ben and Paul left early this morning to start their journey back to Australia. We all exchanged contact information last night so that we can stay in touch. We all miss them already. It is so quiet around here without them. They had such positive attitudes and were a boost to everyone.
The doctor took Derek’s stitches out this morning. The top part still hasn’t completely healed, but I think that the hair dryer on it might be helping. He had acupuncture again this morning and got to go to physical therapy twice today. Today is supposed to be his last day of Ivs. We will wait and see.
The hospital is pretty empty this afternoon because the Chinese New Year festival begins tonight. Tony took Nicole and two other patients family members to Wal Mart for any last minute food or supplies. It is the middle of the afternoon here and Wal Mart is basically the only store still open. We were told that the stores and restaurants will be closed for three days. Everyone has to prepare their on food for the next three days. The staff is on a skeleton crew for the next week during the festival. There is no acupuncture until the 10th, no reflexology for the rest of our time here, and a couple of therapists on each day after the 7th.
When talking to Kirshner, she said that the pain in Derek’s arms are from the stem cells. Nerve pain is the first sign of nerve regeneration. Hopefully the pain will subside and we will begin to see some improvements. The increase in leg spasms is also a good sign. Leg spasms are nerve signals that are misfiring coming from the brain through the spinal cord. Since his surgery and the stem cells, he has had more and stronger ones. They say that this is good because more nerve messages are getting through; they just aren’t controlled movements. Hopefully they will be something to work with when we get home and go to Project Walk in March.
Love, Derek, Nicole and Kathy
Derek got to go to acupuncture yesterday, but not therapy because he still had his stitches. He got another spinal cord stem cell injection last night.
Ben and Paul left early this morning to start their journey back to Australia. We all exchanged contact information last night so that we can stay in touch. We all miss them already. It is so quiet around here without them. They had such positive attitudes and were a boost to everyone.
The doctor took Derek’s stitches out this morning. The top part still hasn’t completely healed, but I think that the hair dryer on it might be helping. He had acupuncture again this morning and got to go to physical therapy twice today. Today is supposed to be his last day of Ivs. We will wait and see.
The hospital is pretty empty this afternoon because the Chinese New Year festival begins tonight. Tony took Nicole and two other patients family members to Wal Mart for any last minute food or supplies. It is the middle of the afternoon here and Wal Mart is basically the only store still open. We were told that the stores and restaurants will be closed for three days. Everyone has to prepare their on food for the next three days. The staff is on a skeleton crew for the next week during the festival. There is no acupuncture until the 10th, no reflexology for the rest of our time here, and a couple of therapists on each day after the 7th.
When talking to Kirshner, she said that the pain in Derek’s arms are from the stem cells. Nerve pain is the first sign of nerve regeneration. Hopefully the pain will subside and we will begin to see some improvements. The increase in leg spasms is also a good sign. Leg spasms are nerve signals that are misfiring coming from the brain through the spinal cord. Since his surgery and the stem cells, he has had more and stronger ones. They say that this is good because more nerve messages are getting through; they just aren’t controlled movements. Hopefully they will be something to work with when we get home and go to Project Walk in March.
Love, Derek, Nicole and Kathy
Sunday, February 3, 2008
Update 2/3/08
Hi,
Ben had been planning an outing for the past week. He had gotten a list of all the patients and family members who were interested in going. He got Tony to hire two vans with drivers to take us to the antique market, a temple and the strange slope. Nicole and I were going to join them at 9:00 this morning. Derek was still on bed rest with more Ivs to be given today. When we were about to leave the room, Sid, a representative that was sent by Beike, came to our room to ask about our concerns that we were having about Derek’s Ivs, his wound not healing well and about not getting any therapy while the Chinese New Year celebration was going on. At the same time, the doctor came in to look at Derek’s incision and took out a few of his stitches. The rest of the group was patient while we took care of these issues. There were three patients in wheelchairs, one Chinese caregiver, three family members, and Tony. We were set to leave when Kirshner and Alf from Beike arrived and decided to go with us. Kirshner lives in the United States and Alf is from the United States but now lives in China. He is the camera man and translator for Kirshner while she is here.
We went to the antique market first. It was like our flea markets at home. Your barter with the salesperson. Once you bought one item, other salespeople would swarm you with similar items. We spent quite a while here and everyone bought a lot of interesting items.
Our next stop was the temple. Tony told us the history of this particular temple. We watched the ceremony that they do to pray. The monks live at the temple. Tony took Nicole and I upstairs to another temple where we paid 10 Chinese dollars for Nicole to find out her fate. You meditate about what ever you want then shake a canister of sticks until one falls out. The monk reads the number on the stick and then you pick a corresponding numbered paper off a wall. You then go downstairs out of this temple into another building where they interpret your paper and your fate. They told Nicole that Derek needs to heal naturally. Be patient; he needs time.
After leaving the temple, everyone was getting hungry. They drove us to a Chinese restaurant where we all got to experience a traditional Chinese meal. We all sat around a round table in a separate room with a large lazy Susan in the middle. They kept bringing us different dishes. We ate with chop sticks and you just keep turning the middle and picking what you want to eat. It was a lot of fun and a great experience.
After lunch, the group was going to the strange slope, which is a magnetic hill. Nicole and I along with Gregg, his mom and his caregiver decided to go back to the hospital instead. It was the middle of the afternoon already and we decided we should get back and check on Derek. We brought everyone’s purchases back with us. We found Lucy holding Derek’s leg down while he was getting an IV in his foot.
When the others got back to the hospital, Kirshner and Sid came in to check on Derek. Kirshner tried to find a useable vein in Derek’s arm for the nurses to try tomorrow. He has two more days of antibiotics and nerve growth Ivs. She also looked at his wound and got the doctor to come in to clean the wound and change the dressing. She told the doctor that he was to take the bandage off twice a day and we were to dry it with a hairdryer. I didn’t bring one because I had no room for it, so Nicole and I are going to Wal Mart to buy one. Sid also worked it out with the therapists so that Derek will get physical therapy twice a day while the New Year celebration is going on other than on the 6th which is the first day.
Love, Derek, Nicole and Kathy
Ben had been planning an outing for the past week. He had gotten a list of all the patients and family members who were interested in going. He got Tony to hire two vans with drivers to take us to the antique market, a temple and the strange slope. Nicole and I were going to join them at 9:00 this morning. Derek was still on bed rest with more Ivs to be given today. When we were about to leave the room, Sid, a representative that was sent by Beike, came to our room to ask about our concerns that we were having about Derek’s Ivs, his wound not healing well and about not getting any therapy while the Chinese New Year celebration was going on. At the same time, the doctor came in to look at Derek’s incision and took out a few of his stitches. The rest of the group was patient while we took care of these issues. There were three patients in wheelchairs, one Chinese caregiver, three family members, and Tony. We were set to leave when Kirshner and Alf from Beike arrived and decided to go with us. Kirshner lives in the United States and Alf is from the United States but now lives in China. He is the camera man and translator for Kirshner while she is here.
We went to the antique market first. It was like our flea markets at home. Your barter with the salesperson. Once you bought one item, other salespeople would swarm you with similar items. We spent quite a while here and everyone bought a lot of interesting items.
Our next stop was the temple. Tony told us the history of this particular temple. We watched the ceremony that they do to pray. The monks live at the temple. Tony took Nicole and I upstairs to another temple where we paid 10 Chinese dollars for Nicole to find out her fate. You meditate about what ever you want then shake a canister of sticks until one falls out. The monk reads the number on the stick and then you pick a corresponding numbered paper off a wall. You then go downstairs out of this temple into another building where they interpret your paper and your fate. They told Nicole that Derek needs to heal naturally. Be patient; he needs time.
After leaving the temple, everyone was getting hungry. They drove us to a Chinese restaurant where we all got to experience a traditional Chinese meal. We all sat around a round table in a separate room with a large lazy Susan in the middle. They kept bringing us different dishes. We ate with chop sticks and you just keep turning the middle and picking what you want to eat. It was a lot of fun and a great experience.
After lunch, the group was going to the strange slope, which is a magnetic hill. Nicole and I along with Gregg, his mom and his caregiver decided to go back to the hospital instead. It was the middle of the afternoon already and we decided we should get back and check on Derek. We brought everyone’s purchases back with us. We found Lucy holding Derek’s leg down while he was getting an IV in his foot.
When the others got back to the hospital, Kirshner and Sid came in to check on Derek. Kirshner tried to find a useable vein in Derek’s arm for the nurses to try tomorrow. He has two more days of antibiotics and nerve growth Ivs. She also looked at his wound and got the doctor to come in to clean the wound and change the dressing. She told the doctor that he was to take the bandage off twice a day and we were to dry it with a hairdryer. I didn’t bring one because I had no room for it, so Nicole and I are going to Wal Mart to buy one. Sid also worked it out with the therapists so that Derek will get physical therapy twice a day while the New Year celebration is going on other than on the 6th which is the first day.
Love, Derek, Nicole and Kathy
Saturday, February 2, 2008
Update 2/2/08
Hello everyone,
We apologize for not getting an update for your yesterday. The past two days have not been the best for all of us. Derek has been in a lot of pain and he doesn’t handle it well. The top of his incision is not healing well. We have had them clean it everyday and put a clean bandage on which comes off within a couple of minutes of them putting it on. They don’t routinely change bandages. You have to request a clean bandage and then they contact the doctor to come and change it. For some unknown reason, he has developed pain in both elbows. We don’t know if it has anything to do with the stem cells or what. We were told by one patient that pain is the first thing that you get back. Why in his elbows, we don’t know. His arms hurt because of all the IV pokes. We have had a lot of disagreements with the nurses and staff the past two days. They insist that they have to put new Ivs in every day. Today they took the one out that was in yesterday without even trying it, put a new one in after several tries, took it back out this afternoon, and then two hours later came in to put another one in just for one bottle of medicine. The past two days Derek has been giving the nurses a hard time and refusing to let them shave him or poke him any more. From what the other patients have told us that have had surgery here, is that he will have to continue to have Ivs every day until he leaves. I don’t know if Nicole and I can play referee for nine more days. We aren’t making many friends with the staff at this rate.
To make things more frustrating, yesterday Tony and Lucy told us that they had changed Derek’s last two stem cell injections schedule. He was supposed to get one last night and one next Tuesday. But because of their spring festival, he will get one next Monday and one on Saturday the 9th. We were also told that there would be no acupuncture or therapy from Feb. 6th through Feb. 13th. This didn’t make us happy because we will have to sit here for the last week just waiting for the last injection with nothing to do. The stores and restaurants are all closed for the holiday. We feel that Beiki Biotech, the company that we scheduled this with, should not schedule the patients to come for the week of the festival. We all paid a lot of money to come here, along with the time off from jobs, and the distance that we had to travel to get acupuncture and physio here that we can’t get at home; only to find out that one week is wasted doing nothing. The other American family feels the same way. We were told that a representative of the company will be at our hospital in a day or two. We are hoping to talk to her, so hopefully this won’t happen to other families next year.
Ben just came in to show us what Gregg, the American from Arkansas, bought him and Paul as a going away present. He ordered them their supper. They had chicken heads, chicken feet and silk worms. They were so gross to even look at and they actually ate some of all of them. We were squirming just hearing the description of what they were like and what they looked like. Yuk!!!
Love, Derek, Nicole and Kathy
We apologize for not getting an update for your yesterday. The past two days have not been the best for all of us. Derek has been in a lot of pain and he doesn’t handle it well. The top of his incision is not healing well. We have had them clean it everyday and put a clean bandage on which comes off within a couple of minutes of them putting it on. They don’t routinely change bandages. You have to request a clean bandage and then they contact the doctor to come and change it. For some unknown reason, he has developed pain in both elbows. We don’t know if it has anything to do with the stem cells or what. We were told by one patient that pain is the first thing that you get back. Why in his elbows, we don’t know. His arms hurt because of all the IV pokes. We have had a lot of disagreements with the nurses and staff the past two days. They insist that they have to put new Ivs in every day. Today they took the one out that was in yesterday without even trying it, put a new one in after several tries, took it back out this afternoon, and then two hours later came in to put another one in just for one bottle of medicine. The past two days Derek has been giving the nurses a hard time and refusing to let them shave him or poke him any more. From what the other patients have told us that have had surgery here, is that he will have to continue to have Ivs every day until he leaves. I don’t know if Nicole and I can play referee for nine more days. We aren’t making many friends with the staff at this rate.
To make things more frustrating, yesterday Tony and Lucy told us that they had changed Derek’s last two stem cell injections schedule. He was supposed to get one last night and one next Tuesday. But because of their spring festival, he will get one next Monday and one on Saturday the 9th. We were also told that there would be no acupuncture or therapy from Feb. 6th through Feb. 13th. This didn’t make us happy because we will have to sit here for the last week just waiting for the last injection with nothing to do. The stores and restaurants are all closed for the holiday. We feel that Beiki Biotech, the company that we scheduled this with, should not schedule the patients to come for the week of the festival. We all paid a lot of money to come here, along with the time off from jobs, and the distance that we had to travel to get acupuncture and physio here that we can’t get at home; only to find out that one week is wasted doing nothing. The other American family feels the same way. We were told that a representative of the company will be at our hospital in a day or two. We are hoping to talk to her, so hopefully this won’t happen to other families next year.
Ben just came in to show us what Gregg, the American from Arkansas, bought him and Paul as a going away present. He ordered them their supper. They had chicken heads, chicken feet and silk worms. They were so gross to even look at and they actually ate some of all of them. We were squirming just hearing the description of what they were like and what they looked like. Yuk!!!
Love, Derek, Nicole and Kathy
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