Dear friends and family, it is good to be back. We cannot thank you enough for your loving support, help, love, and prayers.
Michael has made great progress getting off the ventilator. He has needed only additional oxygen for the past 2 days. We may go back to the vent if needed, but this is the longest he has gone without it. Since he is doing well without the vent, they have been able to alter the trach, allowing him to talk, and eventually eat and drink. It is a blessing to hear his voice.
He is making progress as well in his physical and occupational therapy, sitting up in a chair most days, and becoming more dexterous with everyday tasks. We're hoping he can get more therapy in the next week.
As you know, Mike is extremely immuno-suppressed, so we are constantly on the alert for infections which could delay his recovery. So we are always wiping down the room and being careful to follow all sanitary procedures.
Mike's pleuritic pain seems to be slightly better, and his itching is definitely better. But today's he's had a bought of nausea, which is definitely no fun when you're trying to recover, so we're hoping it was caused by one of oral drugs he's on, or perhaps by the small amounts of liquid he's been eating for his tests to determine if he's ready to eat and drink.
Mike's white cell count is looking great, but he still requires transfusions for platelets and red blood cells (FYI, we may be asking for donors soon), so our hemotologist/oncologist will be calling for a bone marrow aspiration in a few days to determine how his bone marrow is working. So we ask for your prayers for Mike's bone marrow to start picking up the pace in platelet and RBC production, and that the bone marrow aspiration gives us positive indications that the transplant is taking effect. The faster his bone marrow starts to work, the sooner he will be able to fight off infections and speed up the road to recovery.
Mike told us this week that he is glad he is back in KC. As soon as he is ready, we'll start the parade of visitors, as we're all excited to reconnect.
Mike does get on the computer a few times a day, so if you're on FaceBook, you can write on his wall or send him a message. Or you can comment on this blog, as he checks it too :)
Thank you, thank you, thank you.
Friday, July 29, 2011
Monday, July 25, 2011
Back in Kansas City!
Dear friends and family, we are back in Kansas City! On Saturday, we received the all-clear to fly Mike back to Kansas City on a medical plane. He is now at the Select Long Term cute Care facility at Research Hospital. The initial move and transition were very tiring for Mike, and we are still settling in. We'll be staying at a hotel on the plaza until we get everything settled.
Mike has done fairly well the past two days, with the exception of some pleuritic pain which slows him down, and some coughing this afternoon. We are looking forward to starting a good regime of Physical and Occupational Therapy, and a strategy to get him weaned from the ventilator.
The LTAC is a good step-down from an ICU, as Mike is still a very complex patient, and needs some specialized care. We are praising God that we are back in KC, and we are continuing our prayers for Mike's recovery. We are also working to develop a better strategy with our nursing care to ensure that his care matches his acuity.
As we get Mike settled in, we're keeping visitors to a minimum, but we'll let you know when he is able to see more people. Many people are asking for ways to help, and we're still living out of suitcases right now and trying to get Michael settled, so we haven't come up with too many ideas for help right now. We keep you posted. In the meantime your prayers are so helpful!
Mike has done fairly well the past two days, with the exception of some pleuritic pain which slows him down, and some coughing this afternoon. We are looking forward to starting a good regime of Physical and Occupational Therapy, and a strategy to get him weaned from the ventilator.
The LTAC is a good step-down from an ICU, as Mike is still a very complex patient, and needs some specialized care. We are praising God that we are back in KC, and we are continuing our prayers for Mike's recovery. We are also working to develop a better strategy with our nursing care to ensure that his care matches his acuity.
As we get Mike settled in, we're keeping visitors to a minimum, but we'll let you know when he is able to see more people. Many people are asking for ways to help, and we're still living out of suitcases right now and trying to get Michael settled, so we haven't come up with too many ideas for help right now. We keep you posted. In the meantime your prayers are so helpful!
Thursday, July 21, 2011
Possible Changes on the Horizon
Hello dear friends and family. As always, it has been a turbulent week in the ICU, but we have seen many positive signs this week, and we are praying that we have a window within which we can find a more permanent situation for Mike.
Michael's fevers seem to have subsided, meaning he is regaining some of his energy as well. His liver function has improved, though we can't tell whether the kidneys are responding as well and he remains on daily dialysis. After last week's GI bleed, we don't see any signs of a return of the bleed and his tube feedings are going well.
For a few days, Michael has been experiencing a pain in his right chest that is worse with coughing and movement. Doctors performed a CAT scan to determine if there was a blatant cause for the pain (old tissue from lymphoma, or a recurrence of lymphoma), and we are blessed to report that the CAT scan came back clean. Our current theory is that his intercostal muscles (between the ribs) are inflamed after coughing and relearning to breathe. The pain continues, but we are working on strategies to manage it.
After consulting with the medical staff, we believe Michael is currently in a window which may allow us to relocate him to a long term acute care facility (LTAC), which would provide many of the immediate services of an ICU, but allow for a greater degree of comfort and privacy, as well as focusing on the extensive rehabilitation and development Mike needs. Our current care priorities are weaning him from the ventilator, developing an intensive physical therapy strategy, and keeping complications at bay.
We are working diligently now with medical staff, family, friends, and the insurance company to facilitate a transfer. This could happen very quickly, or it could be delayed. As we have not yet determined whether the LTAC would be in Houston, or if there is a possibility of returning to KC, we have not told Michael the details of the possible move.
Dear friends we ask your prayers that we can return home soon, that all involved parties can make this decision with wisdom, that Michael's condition remains stable and continues to progress, that we can avoid graft v. host, and that we can find a way to manage his pain.
Your friendship and love is a constant blessing for us.
Michael's fevers seem to have subsided, meaning he is regaining some of his energy as well. His liver function has improved, though we can't tell whether the kidneys are responding as well and he remains on daily dialysis. After last week's GI bleed, we don't see any signs of a return of the bleed and his tube feedings are going well.
For a few days, Michael has been experiencing a pain in his right chest that is worse with coughing and movement. Doctors performed a CAT scan to determine if there was a blatant cause for the pain (old tissue from lymphoma, or a recurrence of lymphoma), and we are blessed to report that the CAT scan came back clean. Our current theory is that his intercostal muscles (between the ribs) are inflamed after coughing and relearning to breathe. The pain continues, but we are working on strategies to manage it.
After consulting with the medical staff, we believe Michael is currently in a window which may allow us to relocate him to a long term acute care facility (LTAC), which would provide many of the immediate services of an ICU, but allow for a greater degree of comfort and privacy, as well as focusing on the extensive rehabilitation and development Mike needs. Our current care priorities are weaning him from the ventilator, developing an intensive physical therapy strategy, and keeping complications at bay.
We are working diligently now with medical staff, family, friends, and the insurance company to facilitate a transfer. This could happen very quickly, or it could be delayed. As we have not yet determined whether the LTAC would be in Houston, or if there is a possibility of returning to KC, we have not told Michael the details of the possible move.
Dear friends we ask your prayers that we can return home soon, that all involved parties can make this decision with wisdom, that Michael's condition remains stable and continues to progress, that we can avoid graft v. host, and that we can find a way to manage his pain.
Your friendship and love is a constant blessing for us.
Friday, July 15, 2011
Bleeding has Stabilized
Michael's hemoglobin has stabilized today. The doctors will continue to monitor him closely. He did have a fever this afternoon, but has a normal temperature this evening. We're hoping this episode is just a bump and Michael can get back on track.
Prayer requests are for the bleeding to totally resolve, all infections to resolve, no more GVHD, and prayers for the decision and care of the doctors and staff.
We can't thank you enough for all of your prayers and your concern. It really helps. Thank you!!
Prayer requests are for the bleeding to totally resolve, all infections to resolve, no more GVHD, and prayers for the decision and care of the doctors and staff.
We can't thank you enough for all of your prayers and your concern. It really helps. Thank you!!
Thursday, July 14, 2011
Praying for Stabilization - Stopping a Bleed
Our continual thanks to you for your thoughts, prayers, and support.
Over the past few days, Mike has had trouble keeping his hemoglobin levels up, and he had some very bad diarrhea mixed with blood. This, in combination with a low fever and his cough, has made him very tired and much less active. Today, the doctors did an endoscopy to investigate if there was a bleed in the intestines. They found a small ulceration bleeding actively in the duodenum (part of the small intestine, near the stomach), which they closed and treated with epinephrine. They are unsure of the original cause of the ulceration, but will investigate further if the bleed recurs. Possible candidates could be normal reactions to his feeding tube, an opportunistic infection, or the return of graft versus host disease.
After a long day, Mike has been resting comfortably since this afternoon, and we haven't seen any additional bleeding.
Dear friends, please join us in our prayer that the bleeding was successfully stopped and that Mike has a calm and restful night of rest that will heal his body.
We love you all, and we cherish your prayers and support. It is a privilege to thank God for you in our prayers.
Over the past few days, Mike has had trouble keeping his hemoglobin levels up, and he had some very bad diarrhea mixed with blood. This, in combination with a low fever and his cough, has made him very tired and much less active. Today, the doctors did an endoscopy to investigate if there was a bleed in the intestines. They found a small ulceration bleeding actively in the duodenum (part of the small intestine, near the stomach), which they closed and treated with epinephrine. They are unsure of the original cause of the ulceration, but will investigate further if the bleed recurs. Possible candidates could be normal reactions to his feeding tube, an opportunistic infection, or the return of graft versus host disease.
After a long day, Mike has been resting comfortably since this afternoon, and we haven't seen any additional bleeding.
Dear friends, please join us in our prayer that the bleeding was successfully stopped and that Mike has a calm and restful night of rest that will heal his body.
We love you all, and we cherish your prayers and support. It is a privilege to thank God for you in our prayers.
Tuesday, July 12, 2011
Tough Day
Today was a tough day. Michael has been breathing faster with quite a bit of cough and still has a fast heart rate. He also had a fever today, and they pulled a central IV line and put in another, which may help. Also he may have Graft vs Host Disease issues.
So our prayer is for this to be just a bump and get back to making progress. Thank you for your prayers for Michael's lungs, any infections, GvHD and for the doctors and staff with their decisions and care for him. Thank you so much for your prayers and love.
So our prayer is for this to be just a bump and get back to making progress. Thank you for your prayers for Michael's lungs, any infections, GvHD and for the doctors and staff with their decisions and care for him. Thank you so much for your prayers and love.
Monday, July 11, 2011
Still Ups and Downs
Yesterday morning, they tried to push Michael's lungs, but we have taken a few steps back. He got very worn out and today he has needed more time with pressure. He still needs some pressure to help his lungs stay fully inflated at least part of the time. Most of the time, he is breathing either on his own or on his own with the added pressure (CPAP).
The doctor put in a new trach tube Saturday morning and it has seemed to help his cough quite a bit, although he still does cough a little more than we would like. His heart rate, while still elevated, has improved. He still remains on a lot of antibiotics (thanks for the prayers for no more infections). Michael still remains on dialysis, and we are hopeful the function of his kidneys will return.
And then there is the rehab that is going very well. Michael has responded so well to the Physical and Occupational Therapy. Every day he makes more improvements. He is working very hard with the exercises. Right now the big push is to get his core muscles strengthened--he can't stand or walk until he has stronger core muscles, but he is getting there. And Michael is smiling and his sense of humor is there.
While many things have improved, Michael still needs a lot of nursing care after five weeks in the ICU. Because of this the doctors are considering as an option a possible move to a Long Term Acute Care Facility. Many things will have to be considered for this and so we will have to see if this would be the best fit for him. But this sounds like a good option as rehab would be a high priority.
Your continued prayers for Michael are so appreciated. Our requests for prayer include that his lungs to continue to heal, for increased platelet production, no more infections or Graft vs Host Disease and for prayers for the doctors and staff caring for him.
Some of Michael's supporters and prayer partners have been following from the very beginning and some have joined along the way. Many were strangers to us. But we can't thank you all enough for sending all of the love and prayers. It is a blessing to have your support!!
The doctor put in a new trach tube Saturday morning and it has seemed to help his cough quite a bit, although he still does cough a little more than we would like. His heart rate, while still elevated, has improved. He still remains on a lot of antibiotics (thanks for the prayers for no more infections). Michael still remains on dialysis, and we are hopeful the function of his kidneys will return.
And then there is the rehab that is going very well. Michael has responded so well to the Physical and Occupational Therapy. Every day he makes more improvements. He is working very hard with the exercises. Right now the big push is to get his core muscles strengthened--he can't stand or walk until he has stronger core muscles, but he is getting there. And Michael is smiling and his sense of humor is there.
While many things have improved, Michael still needs a lot of nursing care after five weeks in the ICU. Because of this the doctors are considering as an option a possible move to a Long Term Acute Care Facility. Many things will have to be considered for this and so we will have to see if this would be the best fit for him. But this sounds like a good option as rehab would be a high priority.
Your continued prayers for Michael are so appreciated. Our requests for prayer include that his lungs to continue to heal, for increased platelet production, no more infections or Graft vs Host Disease and for prayers for the doctors and staff caring for him.
Some of Michael's supporters and prayer partners have been following from the very beginning and some have joined along the way. Many were strangers to us. But we can't thank you all enough for sending all of the love and prayers. It is a blessing to have your support!!
Friday, July 8, 2011
Ups and Downs
Michael has had increased heart rates (mostly while he is coughing or moving) and still his cough off and on. Numerous possible causes for the heart rate, such as waking up from the sedation. However, he has had lots of cultures drawn. One IV line (now gone) had some bacteria so the doctors are closely watching his blood for infection, but he is on an antibiotic to protect him.
For the good stuff, Michael is making progress getting out of bed. We have him sit on the side of the bed and do some exercises. Each time he is able to do more. The therapist gave him a good workout today that was hard for him to do. When he was done, the therapist asked him how it felt on a scale of one (low) to ten (hard) of how hard it was. He held up one finger and said the word "one".
Thanks so much for your concern and prayers, it helps us all so much.
Our concerns for prayer: for any infections to resolve and for their to be no more infections, for the coughing and lung issues to resolve, platelets to increase and prayers for the doctors and staff. Thank you so much!!
For the good stuff, Michael is making progress getting out of bed. We have him sit on the side of the bed and do some exercises. Each time he is able to do more. The therapist gave him a good workout today that was hard for him to do. When he was done, the therapist asked him how it felt on a scale of one (low) to ten (hard) of how hard it was. He held up one finger and said the word "one".
Thanks so much for your concern and prayers, it helps us all so much.
Our concerns for prayer: for any infections to resolve and for their to be no more infections, for the coughing and lung issues to resolve, platelets to increase and prayers for the doctors and staff. Thank you so much!!
Wednesday, July 6, 2011
Coughing Better
The last two days have been long, but Michael's cough has settled down greatly since about noon today.
Michael's coughing had increased a lot two nights ago and the doctor did a bronchoscopy last evening to see if there was a cause such as bacteria or virus or if there was a return of bleeding from the alveoli (the tiny sacs in the lungs where the exchange of oxygen occurs).
While we are waiting on cultures, there does not appear to have been bleeding from the alveoli. They thought it looked like inflammation from the coughing.
Michael has been breathing a lot own his own through what is called a trach collar--just humidified oxygen passing over the opening to his trachea. Then at night he is put back on the vent, but he is breathing on his own with pressure (CPAP) to push in the oxygen to keep all the alveoli open.
Today, Michael has made progress getting off of his sedation and has remained more relaxed. He has remained more aware of what is going on, but, we have mainly let him sleep today as the coughing was so tiring.
What seemed to help Mike more than anything was Vi's visit--his Occupational Therapist who has been working with him. She had him sit up in bed with his feet on the floor. Not easy to do after being in bed for four weeks, but he was able to do some strengthening exercises for her. After her visit, he slept soundly for over two hours with no coughing!
We were to have a big meeting with all the new doctors coming in which did not happen today, but I did meet with a Nursing Supervisor to come up with strategies for his care. They have already been working to keep the same nurses for Michael, which has really been helpful. One of our goals is to increase his Occupational Therapy and more Physical Therapy (from therapist Stacey). Stacey and Vi are fabulous and will be a big part of Michael's recovery.
While we did not have the formal meeting with the doctors, I did meet the new ICU doctor, Dr PK--I don't know how to spell his name yet. The good news is that he seems to be on board with all the nutrition we worked to get back to and he is big into lots of therapy as well and there were no major changes in his care.
Michael has a long way to go, but he is moving forward. With all of your prayers it helps us all so much and we can't thank you enough. Special request for prayers: for Michael's lungs to continue to heal (and continued settling down of his cough), all infections to resolve and that he be protected from any new infections, for his platelets to increase--they have been low, no more Graft vs Host Disease, and prayers for the decisions and care by all doctors, nurses and staff.
Thank you again, your prayers and concern help more than you know!!
Michael's coughing had increased a lot two nights ago and the doctor did a bronchoscopy last evening to see if there was a cause such as bacteria or virus or if there was a return of bleeding from the alveoli (the tiny sacs in the lungs where the exchange of oxygen occurs).
While we are waiting on cultures, there does not appear to have been bleeding from the alveoli. They thought it looked like inflammation from the coughing.
Michael has been breathing a lot own his own through what is called a trach collar--just humidified oxygen passing over the opening to his trachea. Then at night he is put back on the vent, but he is breathing on his own with pressure (CPAP) to push in the oxygen to keep all the alveoli open.
Today, Michael has made progress getting off of his sedation and has remained more relaxed. He has remained more aware of what is going on, but, we have mainly let him sleep today as the coughing was so tiring.
What seemed to help Mike more than anything was Vi's visit--his Occupational Therapist who has been working with him. She had him sit up in bed with his feet on the floor. Not easy to do after being in bed for four weeks, but he was able to do some strengthening exercises for her. After her visit, he slept soundly for over two hours with no coughing!
We were to have a big meeting with all the new doctors coming in which did not happen today, but I did meet with a Nursing Supervisor to come up with strategies for his care. They have already been working to keep the same nurses for Michael, which has really been helpful. One of our goals is to increase his Occupational Therapy and more Physical Therapy (from therapist Stacey). Stacey and Vi are fabulous and will be a big part of Michael's recovery.
While we did not have the formal meeting with the doctors, I did meet the new ICU doctor, Dr PK--I don't know how to spell his name yet. The good news is that he seems to be on board with all the nutrition we worked to get back to and he is big into lots of therapy as well and there were no major changes in his care.
Michael has a long way to go, but he is moving forward. With all of your prayers it helps us all so much and we can't thank you enough. Special request for prayers: for Michael's lungs to continue to heal (and continued settling down of his cough), all infections to resolve and that he be protected from any new infections, for his platelets to increase--they have been low, no more Graft vs Host Disease, and prayers for the decisions and care by all doctors, nurses and staff.
Thank you again, your prayers and concern help more than you know!!
Monday, July 4, 2011
Working to Reduce Sedation + Persistent Coughing + Convening the Doctors
Hello Dear Friends and Family,
Mike remains in the ICU where we have been working to slowly reduce his sedation and wake him up. We made good progress today, and he did a wonderful job on his range-of-motion exercises, participating in the exercises by pushing against resistance and moving his legs. He even opened his eyes for a few minutes today and scanned the room and seemed to recognize faces, and nodded in response to questions.
Throughout the day, he started coughing, which helped him clear out built-up mucus and blood that have accumulated throughout his stay. Coughing can be a very positive thing, since it is his own body removing the build up. However, he had trouble stopping the coughing, and by the evening his coughs we're producing anything, they were just aggravating his lungs. His respiratory technicians gave him a numbing lidocaine treatment and the nurses increased his sedation for the night.
Tomorrow the hospital administration has helped us plan a convening meeting with all of our attending physicians, as we have had serious concerns about 1) creating a stable plan of care for Michael in light of the constant rotation of doctors 2) incorporating a nutrition plan that can create a sustainable platform for Michael's body to heal itself.
Mike remains in the ICU where we have been working to slowly reduce his sedation and wake him up. We made good progress today, and he did a wonderful job on his range-of-motion exercises, participating in the exercises by pushing against resistance and moving his legs. He even opened his eyes for a few minutes today and scanned the room and seemed to recognize faces, and nodded in response to questions.
Throughout the day, he started coughing, which helped him clear out built-up mucus and blood that have accumulated throughout his stay. Coughing can be a very positive thing, since it is his own body removing the build up. However, he had trouble stopping the coughing, and by the evening his coughs we're producing anything, they were just aggravating his lungs. His respiratory technicians gave him a numbing lidocaine treatment and the nurses increased his sedation for the night.
- Please join in our prayers that we can keep the coughing under control, and that the increased sedation we used tonight to calm him can be reduced quickly in the morning, so we don't lose the progress we have made on reducing his sedation.
Tomorrow the hospital administration has helped us plan a convening meeting with all of our attending physicians, as we have had serious concerns about 1) creating a stable plan of care for Michael in light of the constant rotation of doctors 2) incorporating a nutrition plan that can create a sustainable platform for Michael's body to heal itself.
- We request your prayers that this meeting will produce a mutually beneficial treatment plan, and that all parties are agreeable to this collaborative treatment process.
We know we can't begin to thank you enough for your support and love. You help us to recognize God's constant faithfulness throughout our struggle; nothing great can't be accomplished without Him, and your messages, notes, and prayers are daily reminders of his presence with us.
Sunday, July 3, 2011
Positive Changes Since Protein Increased
It took almost a week to get the protein back to where it was after the change in doctors last Monday, but we have seen an increase in Michael's liver function (which should help work the sedation out of his system). Also, the platelets have been trending higher. Michael was a little more awake briefly earlier in the day, but it has been a very slow process for him to wake up.
Since he has been slow to wake, Michael has had lots of tests to make sure that nothing else is going on. So far, it appears to be a build up of all of the sedation. He is still on sedation as it has to be weaned slowly, plus several of the tests required more sedation.
Since we are having another round of doctor changes coming up with two of the major services, we have been working through numerous avenues to keep the protocol for protein that appears to be contributing to his progress. Thank you for your prayers on this important issue.
While we have a long way to go, it was good to see some progress. We thank you for your continued prayers. Other requests for prayer are for the protein and all other therapies to continue to heal Michael, for no further infections or complications, and for prayers for all the doctors and staff caring for Michael.
Thanks to Aunt Glenda for a visit and to Eric Cowling for a visit and a bag of platelets.
Since he has been slow to wake, Michael has had lots of tests to make sure that nothing else is going on. So far, it appears to be a build up of all of the sedation. He is still on sedation as it has to be weaned slowly, plus several of the tests required more sedation.
Since we are having another round of doctor changes coming up with two of the major services, we have been working through numerous avenues to keep the protocol for protein that appears to be contributing to his progress. Thank you for your prayers on this important issue.
While we have a long way to go, it was good to see some progress. We thank you for your continued prayers. Other requests for prayer are for the protein and all other therapies to continue to heal Michael, for no further infections or complications, and for prayers for all the doctors and staff caring for Michael.
Thanks to Aunt Glenda for a visit and to Eric Cowling for a visit and a bag of platelets.
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