Tuesday, 10:30 a.m.
So, Alison did come home from the hospital last night. Yes, we were surprised too-but, needless to say, elated. The Interventional Radiologist tapped 2,000 cc's of fluid from her abdomen and 500 from around her right lung. She was in a lot of pain afterward and needed those dreaded narcotics again. However, as the afternoon wore on, she was better as long as she did not move. The transplant team came in and said they wanted to tap the fluid on the left today. After much discussion, it was decided that we would not do that and after getting albumin and a treatment with albuterol (that typical asthma medication, we learned can help bring your pottasium down), we would do her bloodwork again. If her potassium and blood pressure were down, she would be able to go home. We anxiously waited and prayed for the good results and our prayers were answered and off to home we headed. Alison slept in the recliner and was uncomfortable but she was able to sleep in her own home-she will tell you that that is better than any bed in the hospital. She seems good this morning, still in pain when she moves but is able to "work with" the pain. We're hoping today, if she feels up to it, to do a little Christmas decorating. She is excited to do that but we'll just take things one step at a time. We do need to go to the Transplant Clinic tomorrow, please pray that her potassium stays within normal limits, or she will be readmitted to the hospital-we would really rather keep that "sleeping in your own home" concept going if we can.
Have a good day, we know that we will certainly looking forward to having one.
Love,
Joe and Karen
Tuesday, December 8, 2009
Monday, December 7, 2009
Tap, tap, tap......
Monday, 10 a.m.
So, they took Alison in to Interventional Radiology earlier than we expected today-that now that is really a miracle!! After much discussion, it looks like the doctor will tap fluid from around Alison's right lung and her abdomen. They are not planning to leave a drain in. We hope the final decisions are what will work best. Draining fluid from around the lung typically causes a great deal of pain and we really don't want to end up in a cycle of pain medications and resulting issues. We also hope that not putting a drain in is the right decision as we do not want to be back here doing this again. Today's decisions are different than what we discussed with Dr. Emre last Friday but we confirmed that Dr. Emre has been consulted today -we trust his judgement. Alison made the final decision-saying, "If that is what Dr. Emre said, then that is what I will do". Alison has grown to become such a good decision maker and self advocate. She is really amazing. Please pray that her blood pressure is safe during the procedure and that she is with as little pain as possible afterward. Please also pray that her blood pressure and potassium levels will come down once the fluid is tapped. We will update later.
Karen and Joe
So, they took Alison in to Interventional Radiology earlier than we expected today-that now that is really a miracle!! After much discussion, it looks like the doctor will tap fluid from around Alison's right lung and her abdomen. They are not planning to leave a drain in. We hope the final decisions are what will work best. Draining fluid from around the lung typically causes a great deal of pain and we really don't want to end up in a cycle of pain medications and resulting issues. We also hope that not putting a drain in is the right decision as we do not want to be back here doing this again. Today's decisions are different than what we discussed with Dr. Emre last Friday but we confirmed that Dr. Emre has been consulted today -we trust his judgement. Alison made the final decision-saying, "If that is what Dr. Emre said, then that is what I will do". Alison has grown to become such a good decision maker and self advocate. She is really amazing. Please pray that her blood pressure is safe during the procedure and that she is with as little pain as possible afterward. Please also pray that her blood pressure and potassium levels will come down once the fluid is tapped. We will update later.
Karen and Joe
Sunday, December 6, 2009
Sunday afternoon update
Sunday, 2 p.m.
Alison and dad had an "OK" night. The doctor decided this morning to take the feeding tube out. If Alison can eat enough, she may not need to get it put back in. The doctor also decided to hold off until tomorrow to tap the fluid and put the drain in as they are more comfortable with the "senior staff" being here. Alison's blood pressure and potassium level are high. Both are being watched very carefully. She is actually feeling pretty good. So, she is really trying to eat as much as she can-as you can imagine, she will do anything in her power to not have the feeding tube again. We just heard that her potassium level went up a bit higher but that was before she was given a good dose of lasix. Please pray that her potassium and blood pressure levels go down. We will update later.
Karen and Joe
Alison and dad had an "OK" night. The doctor decided this morning to take the feeding tube out. If Alison can eat enough, she may not need to get it put back in. The doctor also decided to hold off until tomorrow to tap the fluid and put the drain in as they are more comfortable with the "senior staff" being here. Alison's blood pressure and potassium level are high. Both are being watched very carefully. She is actually feeling pretty good. So, she is really trying to eat as much as she can-as you can imagine, she will do anything in her power to not have the feeding tube again. We just heard that her potassium level went up a bit higher but that was before she was given a good dose of lasix. Please pray that her potassium and blood pressure levels go down. We will update later.
Karen and Joe
Saturday, December 5, 2009
Back in the hospital
Friday 11:30 p.m.
Alison awoke this morning to the sound of her feeding tube beeping. After an hour or so of attempting to unclug her tube, we were on the phone with Yale. They wanted her to come in but we were able to persuade them to allow her to stay home if she was able to drink and eat high protein and calorie drinks, etc.-one challenge diverted. Little did we know that more challenges would lie ahead. The morning continued with Jen coming by to help her mom and dad bring all the Christmas boxes down from the attic. Mission accomplished and then onto giving the dogs their baths. All was going well at the Cubbellotti's. While mom started to unpack the boxes, Alison awoke from a nap in the recliner. Mom knew by the sound of her voice that something was not right. Alison was having trouble breathing. Luckily, we still had oxygen in the house from before the transplant. We put the oxygen on but Alison's breathing was still challenged. Off to Yale we went. After a couple of hours in the emergency room, Alison was admitted. With pain medication, she is resting comfortably. Her blood pressure is quite high, which is concerning but mom just spoke with the doctors who will monitor Alison closely throughout the night and then we will see if they will put a drain in and tap some of the fluid tomorrow. Dad is staying overnight with Alison. Mom came home-with Christmas decorations everywhere, mom tried to "pull it together". The energy level quickly faded and now it's off to bed to rest up for what lies ahead. Please pray that Alison's blood pressure is controlled throughout the night and that the doctor's will be successful in their interventions tomorrow.
Good night to all,
Karen and Joe
Alison awoke this morning to the sound of her feeding tube beeping. After an hour or so of attempting to unclug her tube, we were on the phone with Yale. They wanted her to come in but we were able to persuade them to allow her to stay home if she was able to drink and eat high protein and calorie drinks, etc.-one challenge diverted. Little did we know that more challenges would lie ahead. The morning continued with Jen coming by to help her mom and dad bring all the Christmas boxes down from the attic. Mission accomplished and then onto giving the dogs their baths. All was going well at the Cubbellotti's. While mom started to unpack the boxes, Alison awoke from a nap in the recliner. Mom knew by the sound of her voice that something was not right. Alison was having trouble breathing. Luckily, we still had oxygen in the house from before the transplant. We put the oxygen on but Alison's breathing was still challenged. Off to Yale we went. After a couple of hours in the emergency room, Alison was admitted. With pain medication, she is resting comfortably. Her blood pressure is quite high, which is concerning but mom just spoke with the doctors who will monitor Alison closely throughout the night and then we will see if they will put a drain in and tap some of the fluid tomorrow. Dad is staying overnight with Alison. Mom came home-with Christmas decorations everywhere, mom tried to "pull it together". The energy level quickly faded and now it's off to bed to rest up for what lies ahead. Please pray that Alison's blood pressure is controlled throughout the night and that the doctor's will be successful in their interventions tomorrow.
Good night to all,
Karen and Joe
Friday, December 4, 2009
Talk, smile, laugh.....
Friday, 9:15 p.m.
So Thursday turned out to be a very long day. We arrived at Yale at 8:30 a.m. for bloodwork, waited until around 11:OO to see a doctor who then called Dr. Emre. Dr. Emre wanted an ultrasound to get a sample of fluid from Alison's abdomen and then perhaps drain some fluid. Well, it was decided after an initial ultrasound in the transplant clinic that we would need to go over to the hospital to have an ultrasound done by a technician and then make a final determination as to whether Alison would need to go to Interventional Radiology to have fluid drained. Well, we couldn't get an appointment until 2:30 p.m.-more waiting for Alison without being able to eat or have the tube feeding. Finally, the ultrasound was done, Dr. Emre was consulted and we were told that they would not tap the fluid and we should go home and come back in the morning to see Dr. Emre. It was now almost 4 p.m. and needless to say, we were very, very frustrated. This was a very long and challenging day for Alison-she had only been out of the hospital for a day!!! Anyway, we headed home and Alison had an "OK" night. She decided to try and sleep in the recliner to see if she would get a more restful night.
We headed back to Yale this morning. With prayers being said, we arrived for bloodwork. After waiting again for a couple of hours, we finally saw Dr. Emre. Alison's white count had come down-that was good news. Other components of her bloodwork looked good also-Yeah!. She did have more fluid build up though, so Dr. Emre decide to start lasix again. If, Alison's fluid does not lessen, she will have a drain put in her abdomen on Monday. This was not good news, so we pray that her body along with the lasix will lessen the fluid this weekend. The good news is that Alison is probably feeling the best she has felt in a very long time. Once home, we had a relaxing evening, making pizza. Alison's roommate, Marissa joined us-it was so nice to see Alison enjoying some time with a friend. Her legs and ankles were pretty swollen by bedtime, hopefully that will be better tomorrow. Our cousin, Marianne brought Alison a special gift tonight, which she just loved-a beautiful frame that said, "Miracles Happen" and on the back she printed special excerpts from the blog. We certainly do know that miracles really do happen, we were reminded of that today as we got a glimpse of the "old" Alison. Yes, miracles do happen-we thank our John for giving us the gift of watching our daughter, for the first time in a very long time-talk and smile and laugh.
Much love to all,
Karen and Joe
So Thursday turned out to be a very long day. We arrived at Yale at 8:30 a.m. for bloodwork, waited until around 11:OO to see a doctor who then called Dr. Emre. Dr. Emre wanted an ultrasound to get a sample of fluid from Alison's abdomen and then perhaps drain some fluid. Well, it was decided after an initial ultrasound in the transplant clinic that we would need to go over to the hospital to have an ultrasound done by a technician and then make a final determination as to whether Alison would need to go to Interventional Radiology to have fluid drained. Well, we couldn't get an appointment until 2:30 p.m.-more waiting for Alison without being able to eat or have the tube feeding. Finally, the ultrasound was done, Dr. Emre was consulted and we were told that they would not tap the fluid and we should go home and come back in the morning to see Dr. Emre. It was now almost 4 p.m. and needless to say, we were very, very frustrated. This was a very long and challenging day for Alison-she had only been out of the hospital for a day!!! Anyway, we headed home and Alison had an "OK" night. She decided to try and sleep in the recliner to see if she would get a more restful night.
We headed back to Yale this morning. With prayers being said, we arrived for bloodwork. After waiting again for a couple of hours, we finally saw Dr. Emre. Alison's white count had come down-that was good news. Other components of her bloodwork looked good also-Yeah!. She did have more fluid build up though, so Dr. Emre decide to start lasix again. If, Alison's fluid does not lessen, she will have a drain put in her abdomen on Monday. This was not good news, so we pray that her body along with the lasix will lessen the fluid this weekend. The good news is that Alison is probably feeling the best she has felt in a very long time. Once home, we had a relaxing evening, making pizza. Alison's roommate, Marissa joined us-it was so nice to see Alison enjoying some time with a friend. Her legs and ankles were pretty swollen by bedtime, hopefully that will be better tomorrow. Our cousin, Marianne brought Alison a special gift tonight, which she just loved-a beautiful frame that said, "Miracles Happen" and on the back she printed special excerpts from the blog. We certainly do know that miracles really do happen, we were reminded of that today as we got a glimpse of the "old" Alison. Yes, miracles do happen-we thank our John for giving us the gift of watching our daughter, for the first time in a very long time-talk and smile and laugh.
Much love to all,
Karen and Joe
Wednesday, December 2, 2009
First night home
Wednesday, 6:50 p.m.
So, Alison's first night at home was a bit rocky. She did not sleep well, she just could not get comfortable. Maybe she missed her hospital bed-nahhhhh!!!! She also had a low grade fever, which got us a bit alarmed. I called the transplant service and the doctor on immediately contacted Dr. Emre. We were told that we could give her tylenol and if as long as things did not get worse, we should come in to see Dr. Emre in the morning-ugh! The last thing that Alison wanted to do was go back to Yale today. She no longer had a fever in the morning, so we called and asked if we could wait until our appointment tomorrow. Dr. Emre said that was fine but to watch her very closely. Overall, it was a good day. Alison ate pretty well (for her)-it was so nice for the three of us to sit at the dinner table together. With dogs by our side, it was great! Alison was able to take a shower, walk a bit (around the house that is, she said it was too cold outside-she gets cold very easily), and do her breathing exercises. She was quite tired after her shower and continues to have pain with her back but overall is doing better. John's dad called today, he was so excited for Alison to be home. John is doing well. I was able to take Corbin for a walk with my friend, Sandi. It was wonderful to breathe the fresh air, get some much needed exercise and chat. I think Alison liked the 45 minutes she had to herself-thank goodness for cell phones though.
Well, hopefully tonight will go well. We need to be at Yale bright and early tomorrow for bloodwork and an appointment with Dr. Emre. Hopefully, that is all and we will be home by mid-day. We also have a dear friend who is going in for surgery tommorow, we have no doubt that all will be fine. Please pray that all goes well for everyone.
Much love,
Karen & Joe
P.S. Thanks to many for the "Welcome Home" emails. All the words of joy and encouragment are so heartwarming. We are so blessed to have such great friends and family.
So, Alison's first night at home was a bit rocky. She did not sleep well, she just could not get comfortable. Maybe she missed her hospital bed-nahhhhh!!!! She also had a low grade fever, which got us a bit alarmed. I called the transplant service and the doctor on immediately contacted Dr. Emre. We were told that we could give her tylenol and if as long as things did not get worse, we should come in to see Dr. Emre in the morning-ugh! The last thing that Alison wanted to do was go back to Yale today. She no longer had a fever in the morning, so we called and asked if we could wait until our appointment tomorrow. Dr. Emre said that was fine but to watch her very closely. Overall, it was a good day. Alison ate pretty well (for her)-it was so nice for the three of us to sit at the dinner table together. With dogs by our side, it was great! Alison was able to take a shower, walk a bit (around the house that is, she said it was too cold outside-she gets cold very easily), and do her breathing exercises. She was quite tired after her shower and continues to have pain with her back but overall is doing better. John's dad called today, he was so excited for Alison to be home. John is doing well. I was able to take Corbin for a walk with my friend, Sandi. It was wonderful to breathe the fresh air, get some much needed exercise and chat. I think Alison liked the 45 minutes she had to herself-thank goodness for cell phones though.
Well, hopefully tonight will go well. We need to be at Yale bright and early tomorrow for bloodwork and an appointment with Dr. Emre. Hopefully, that is all and we will be home by mid-day. We also have a dear friend who is going in for surgery tommorow, we have no doubt that all will be fine. Please pray that all goes well for everyone.
Much love,
Karen & Joe
P.S. Thanks to many for the "Welcome Home" emails. All the words of joy and encouragment are so heartwarming. We are so blessed to have such great friends and family.
Tuesday, December 1, 2009
Homeward bound it is!!!!
Tuesday, 11:30 a.m.
So, after a long night (Alison was having abdominal pain)we were unsure of what would happen today. Dr. Emre came in this morning though and still felt it was safe to go home. Alison is a bit nervous, she does not want to come back.! I told her that calm and positive thoughts are important. Karen, the massage therapist and reflexologist from The Dignity Project is here now. Her presence and skill are exactly what Alison needs. It is just remarkable how Alison feels after a session with Karen, hopefully we will be able to continue after discharge.
Joe will be here shortly-for the "big move". I think we accumulated more this time then last, of course, this hospitalization was a bit longer than the first.
We are all really looking forward to being at home together. Although, Alison still has a long way to go with tube feedings and ongoing follow up visits with many doctors, we are hopeful that the most difficult times are behind us.
Our thoughts now turn to Christmas, the most beautiful season of all. Alison is looking forward to making gifts for family and friends and we are both looking forward to baking cookies with Jen. Decorating the house and trimming the tree with all of us will be wonderful. We have so much to be grateful for and to look forward to. Please pray that she will feel better and better every day and be able to enjoy this new start to her life.
Happy Holidays!
Much love to all,
Karen
So, after a long night (Alison was having abdominal pain)we were unsure of what would happen today. Dr. Emre came in this morning though and still felt it was safe to go home. Alison is a bit nervous, she does not want to come back.! I told her that calm and positive thoughts are important. Karen, the massage therapist and reflexologist from The Dignity Project is here now. Her presence and skill are exactly what Alison needs. It is just remarkable how Alison feels after a session with Karen, hopefully we will be able to continue after discharge.
Joe will be here shortly-for the "big move". I think we accumulated more this time then last, of course, this hospitalization was a bit longer than the first.
We are all really looking forward to being at home together. Although, Alison still has a long way to go with tube feedings and ongoing follow up visits with many doctors, we are hopeful that the most difficult times are behind us.
Our thoughts now turn to Christmas, the most beautiful season of all. Alison is looking forward to making gifts for family and friends and we are both looking forward to baking cookies with Jen. Decorating the house and trimming the tree with all of us will be wonderful. We have so much to be grateful for and to look forward to. Please pray that she will feel better and better every day and be able to enjoy this new start to her life.
Happy Holidays!
Much love to all,
Karen
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