Memorial Details and Obituary

Dear Friends and Family,


For those of you located in KC, you can find a full obituary in Wednesday's Lee's Summit Journal and an abbreviated version in the Kansas City Star.  We've also included the copy at the end of this post.


We are looking forward to celebrating Michael's life this Saturday, and we are grateful to share that the United Methodist Women group will be organizing a lunch following the service (potluck details below).  We welcome your presence and thank you for spreading the word:

A Celebration for Michael Smith Hill
Saturday, October 1
Visitation from 9am-Noon
Memorial Service from Noon -1pm
Lunch starting at 1pm
Lee's Summit United Methodist Church
114 SE Douglas St, Lee's Summit


In lieu of flowers, we welcome donations to the following causes:

• Nicaragua Missions at Lee's Summit United Methodist Church (Payable to LSUMC, Memo: Nicaragua in Memory of Michael Hill, 114 SE Douglas St, Lees Summit, MO 64063)
• Triangle Fraternity Education Foundation (Memo: In Memory of Michael Hill, 120 S. Center Street, Plainfield, Indiana, 46168)

ISU students and out-of-town relatives: our many local friends have opened their homes to you. To set up a homestay, contact Tracey Cook at cooks7894@gmail.com

Volunteering and Potluck Details for the Memorial Service:  Please contact Rachel at randrisevic@reachingthesummit.com in order to sign-up for potluck food or hosting/greeting at the service and/or the lunch.  Food/Desserts could be brought to LSUMC as early as Friday from 8:30 am - 8 pm or anytime on Saturday morning before the lunch.

Here is Michael's obituary:

MICHAEL SMITH HILL, 23,fought the good fight, finished the race, and kept the faith. A 2007 graduate of Lee's Summit High School, and student in Community and Regional Planning and member of Triangle Fraternity at Iowa State University, Michael passed away on September 17, concluding a 21 month battle with Lymphoma and complications from a stem cell transplant. Throughout his battle, Michael remained faithful to the Lord and never stopped fighting. Michael Smith Hill was the cherished son of Mark Lee Hill and Brenda Smith Hill and brother of Melissa Renee Hill. He is also survived by his paternal grandmother Betty Marshall Hill and maternal grandparents Kathleen Smith Harness and Jay Harness. Visitation from 9am-Noon and a Memorial Service at Noon will be held on October 1 at Lee's Summit United Methodist Church. Donations can be made in Michael's honor to the Nicaragua Missions at Lee's Summit United Methodist Church (Payable to LSUMC, Memo: Nicaragua, 114 SE Douglas St, Lees Summit, MO 64063) and to Triangle Fraternity Education Foundation (120 S. Center Street, Plainfield, Indiana, 46168).

As always, we thank you for your support of Michael throughout his journey.  Saturday will be a difficult day, but we welcome the opportunity to meet with you in fellowship and celebrate Michael.  God bless you.

Memorial Contribution Information

Hello Dear Friends and Family,

An obituary for Michael will be coming out this Wednesday, but we wanted to respond to several questions we have received about making contributions in Michael's honor.  Mike was a loving and compassionate young man, and we believe a charitable gift is a fantastic way to honor his memory.

Reflecting on Michael's most impactful experiences as a young man, we have identified 2 charitable donation opportunities that we feel celebrate his life.  In lieu of flowers, we welcome donations to the following causes:

• Nicaragua Missions at Lee's Summit United Methodist Church (Payable to LSUMC, Memo: Nicaragua in Memory of Michael Hill, 114 SE Douglas St, Lees Summit, MO 64063)
• Triangle Fraternity Education Foundation (Memo: In Memory of Michael Hill, 120 S. Center Street, Plainfield, Indiana, 46168)

Michael's mission to Nicaragua was one of the most poignant and spiritual experiences of his life; and we continue to marvel at the stories his fellow mission-goers relate to us of the dedication and maturity Michael demonstrated during his time there.

As a member of the Triangle Fraternity (an academic fraternity for architects, engineers, and scientists) at Iowa State University, Michael found a community of welcoming and supportive peers that helped him to excel academically and socially.  Through Triangle, Michael received immeasurable opportunities to develop as a leader and a developing professional.

Both of these causes continue to offer these same opportunities to those who seek them, and financial support of them is a meaningful way to honor the significance they brought to Michael's life.  Thank you for considering a gift in Michael's name.

PS: Several individuals have inquired about supporting the medical and environmental-testing expenses incurred by the family during Michael's long illness.  Please note that if you choose to give a personal gift to the family it is not tax-deductible (unlike the gifts described above).

Memorial Service Info

Hello Dear Friends and Family,

We want to sincerely thank you for your incredible support and love.  We have received visits, calls, cards,meals  and prayers from so many of our friends, family, and church family.  Michael's friends are sending us pictures and stories of their time with Michael.  And our pastor Jim Preisig has beautifully contemplated the blessing of Michael's life in his blog: http://www.jimpreisig.com/

In the midst of mourning, making arrangements, and meeting with friends and family, it is easy to become overwhelmed, but we have received such amazing support that we have been able to move through this time as a family.

We are glad to extend this invitation to Michael's Memorial Service.  Michael was friendly, kind, and compassionate; and so was loved by many.  Please help us spread the word about the service.

A Celebration for Michael Smith Hill
Saturday, October 1
Visitation from 9am-Noon
Memorial Service from Noon -1pm
Lee's Summit United Methodist Church
114 SE Douglas St, Lee's Summit
(more details to follow)

For our out of town visitors and visiting students from Iowa State University, we have many loving friends who have opened their homes to you.  If you need a place to stay while visiting for the service, please contact Tracey Cook at cooks7894@gmail.com

Many people have asked us if there is anything to do during this time.  We have updated our care calendar with some additional needs for the next few weeks.  We always appreciate your prayers, and we would love to see you at the memorial.


http://www.carecalendar.org/logon/82346
CALENDAR ID : 82346
SECURITY CODE : 5377


Quick Note: we do have a pressing need on the CareCalendar scheduled for tomorrow.  There is a lovely journal there we would like to use for our sign-in book at the Memorial, and we think they are running low.  Please sign-up for it if this is something you can do (details in the calendar item).

Thank you so much, and God bless you.

Finally Home

Dear Friends and Family,

It is with sad yet faithful hearts that we share that Michael went to be with the Lord this evening.

Surrounded by his loving family and close friends, and hearing the comforting words of calling pastor Rich Olson, Michael passed peacefully and without pain.

Through the past few days, friends and family have visited Michael, sharing stories with us and with Michael.  Even more have posted on his FaceBook, and Mike's dear friend James has read them to Mike.  We also know many unseen souls have kept us close to their hearts in their thoughts and prayers.  For all of this support and love, we are grateful.

Many tears will be shed for his absence, but Michael was assured of his salvation through Christ.  His passing takes his daily presence from us, but we know he is freed of his imperfections and of the pain he has endured these many months.  He is now free to be the beautiful and perfect child of God he was meant to be.

In the coming days, we will be planning a Memorial Service so that we can share and celebrate Michael's blessed life.  When this information becomes available, we ask you assistance getting the word out.

Michael was an extravagant blessing in our lives.  We are grateful for the time we had with him, and grateful for our opportunity to celebrate it with you.  Thank you, dear friends.

Giving It All to God

Dear Friends and Family,

As you have seen in our past few blogs, Mike has steadily been losing his reflexes and responses.  His CTs, EEGs, and MRIs have confirmed that he has increasing amounts of brain damage, and our neurologists believe it is irreversible damage.

In order to establish any activity in the brain, the neurologist conducted a series of tests today, to which he received no response from Michael.  They pronounced him brain dead this afternoon.

We have began our care consults with the palliative nurse on staff at research, and on the basis of this diagnosis, the doctors have to alter the care given to Michael.  He can't continue to receive valuable blood products from local blood banks, and they will be reducing the amount of medical support.  His body is still alive under high levels of medical support, but his brain has stopped.  His blood pressure is currently precarious, and his tired body is fragile.  

One of our wonderful caring pastors, Rich Olson came to the hospital this afternoon.  He read a passage which spoke to our hearts:

I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.  (2 Timothy 4: 7-8)

Although Mike is still on high levels of medical support, he could leave us at any time.  Tomorrow we will be removing the rest of the support, and we think he will leave us shortly after that, though it could be longer.

We love and cherish Michael and the precious time we have had with him.  We thank God for his blessings on this family, and his gift of Michael Smith Hill to us.

Latest Test Results

Dear friends and family, thank you for your touching support and love.

Since our last post, Mike has not shown any further signs of waking up or regaining his reflexes.  While we are still waiting for all of the results of the lumbar puncture last week, none of the current results are helping us understand what has caused his condition.

Our doctors have performed several tests to assess his neural status.  An EEG shows a slowing of the neural processes, especially in relation to the previous EEG.  And a CT scan shows additional brain damage since last week's scans.  Neither test shows the cause of the symptoms, but they do confirm that his neural state is not improving.  Although the cause is not known, the doctors are not optimistic that he could recover from the damage.

Mike's heart rate is better, but his blood pressure varies greatly and he sometimes requires higher support from the ventilator.

We have an MRI planned for Friday, which may be able to give us greater detail of his neural status.

We continue our prayers for Michael's care and wellbeing, and we are working to ensure that someone is always with him.  Thank you so much for your support and fellowship.

Waiting for More Test Results

Hello to everyone.  Since Michael has been back in the ICU, he has not been waking up any more.  Michael had a lumbar puncture last Friday.  Some of the results are back, some may take a week or two longer to find the results.  So far, nothing has come back as positive and the doctors have had differing views as to if what he has is related to an infection.  
So far he is being covered for infections in case something comes up and also for an auto immune reaction.  
Michael will be having more tests as well later this week.  The doctors have not been encouraged that he is not responding more.
So we can't tell you how much all of your prayers have meant to us as we wait for Michael to wake up and for more test results.  We thank you for all of your prayers for Michael to wake up, for all infections to clear, for his kidney function to return and for all the prayers for his healing.
Thank you so much!!

Worrying Changes in the Brain + Back in the ICU

Hello Dear Friends and Family,

Today has been a long day.  We started the day on the fourth floor.  Mike had trouble maintaining his blood pressure, and when it got to low he was moved to the ICU.  When they did an assessment in the ICU they found he was not exhibiting the responses and reflexes he should, specifically did not have a corneal reflex. 

This can be a very serious problem, as the corneal reflex is controlled by the brainstem, which controls such basic functions as breathing.  So the doctors did many tests today including a CT and an MRI with contrast.  The scans showed different results than we have seen in the past.   There are visible changes in the brain, showing areas near the brainstem, the temporal lobe, back of the midbrain, and the occipital lobes that seem to have restricted water distribution.  They are not sure what is causing them, but they seem to be changes that have been made over time since our last scans.  They are also not sure the status of these areas where the brain has changed, but they know there is increased risk for stroke when they are present.

There are several theories on what may be causing these changes.  They will be starting treatment for auto-immune disorders; if this is what he has, he should respond within a few days.  It can also be due to a drug interaction or bacterial/viral meningitis, so we are changing our antibiotics and anti-fungals.  We are also getting a Lumbar Puncture (spinal tap) tomorrow to evaluate the spinal fluid and hopefully figure out what is wrong.  Some of the results of the LP will be back tomorrow.  Some may take several weeks.

Mike had a very tiring day with the multiple tests and dialysis to remove the contrast from the MRI.  He is on much higher ventilator support and a higher percentage of oxygen in the air he receives.  We’re praying for a quiet night of rest for him. 

I know you can tell it has been a stressful and frustrating day to return to the ICU and receive news like this.  But please believe me when I tell you that we continue to see the blessings of God throughout this journey.  Yesterday, Michael was cared for by a dear brother in Christ who accompanied Michael in his mission trip to Nicaragua, and by a family friend whose own family was recently the recipient of a caring ministry and is now giving care to us.  Tomorrow, we will have the support of Brenda’s lifelong friend, a beloved family friend whose son grew up with Michael, and Michael’s loving Uncle .  Every day we feel the love of Christ through the miracles he performs, not just through Michael’s medical team, but also through the loving hands and hearts of our friends and family.

If you want to help, please know the first service we ask for is your prayer.  If you would like to give time or food, please check our Care Calendar, it is a comfort to have you with us:

http://www.carecalendar.org/logon/82346
CALENDAR ID : 82346
SECURITY CODE : 5377

We cannot thank you enough for the blessings you bring us.  We thank God for you.

Prayers for Michael to Wake Up

Hello everyone and thank you for your prayers.  Michael is still not waking up.  We feel he can hear us and does open his eyes a few times a day to someone's voice.  But he is opening his eyes not as far and less often than he had been.  He does respond a little to pain and a few times a day we have been able to have Michael move just slightly to command, but that has become less.  He was moving more in the ICU, so we are praying he begins waking soon. 
The unit we moved to is a step down unit and not long term care, so they will be determining where he will be receiving care next.  If he begins waking up more, he will be able to stay here longer.  Another issue complicating the move is that Michael is still on dialysis and on the ventilator, which limits the places where he can go.
If Mike's kidneys would begin functioning again, in addition to being truly wonderful for the healing of his body it would be really helpful to his lungs (some of the fluid that builds up in his body in between dialysis goes to his lungs), it would make it much easier to find a place for Michael to go.  The doctors have been able to stop the drug causing the most potential damage to his kidneys as the adenovirus has cleared from his blood.  That change was about a week ago, so hopefully that will help.
So in addition to prayers for Michael to wake up soon, also prayers for the healing of his kidneys would be so appreciated.  The white blood and red blood cells have been bouncing around, so we appreciate prayers on that as well.  And we thank you for prayers for the care providers as they make decisions.   
Thank you for all of the prayers that have been lifted for Michael for his body to heal and our family.  And thank you for the meals, visits--we thank you so much!!

A Couple of Rough Days for Waking Up

Hello everyone.  Thanks for your continued concern and prayers.  Michael has not been as awake this last week.  We are continuing to hope and pray it is because his body is so busy making new blood cells that it does not have the energy to wake up as well--and hopefully he can start waking up soon.
Also, in the last two days, Michael has had what appears to be seizure activity again.  The doctors stopped a drug he had been on about 12 days ago that they thought was responsible for his bone marrow being depressed and when it was stopped is when his red and especially white blood cells started producing a lot more (plus there were a lot of prayers for Mike).  Yesterday, they stopped a drug he was on to help wake him up that may have been causing these new seizures.  So we will have to wait and see.
The drug stopped yesterday may also have been causing an increase in his heart rate and blood pressure, which are lower today.   So we will have to wait and see if this drug was effecting these as well.
We can't thank you enough for all of your prayers.  We appreciate so much your prayers to help his body make the healthy blood cells he needs--white and red cells and platelets.   And thank you for prayers to protect him from infection and from Graft vs Host Disease.  And thank you for your prayers to help Michael wake up and move and no more seizures.  
We cherish all of your prayers, positive thoughts and visualizations for Michael's recovery.  
Thank you so much!!
The Iowa State football game is on in Michael's room now.  Aunt Glenda and Uncle Lyle and James and many other friends are cheering on the Cyclones for Michael (as well as the Triangle on the bench).

New Changes + September Volunteer Opportunities

Dear Friends and Family,

The past few days have been very faced paced for Michael.  His blood production continues to improve: his white cell count is 6.3, and he has not had a blood transfusion in a week.  Michael has moved to a new room on the 4th floor, which is an ICU step down room which provides ventilator care.  He is now in room 4120.

We thank God and and we thank you for your prayers for the improvement in his bone marrow's ability to make blood products.  We also thank his doctors for their thorough evaluation of his drugs and discovery that one of them can rarely suppress bone marrow function.

He is opening his eyes more and making some more intentional movements with his arms.  He is still not awake though, so we pray that he will soon be aware of all the loving volunteers, family, and friends around him.

Also, the September Care Calendar is up and there are plenty of times available to come and sit with Michael.  If you are available to help, please consider signing up:


http://www.carecalendar.org/logon/82346

CALENDAR ID : 82346

SECURITY CODE : 5377

Thank you so much for your support and prayers.  YOU are a blessing.

White Blood Cells are Up

Michael's white blood cells are 5 times higher than a week ago!!  And the red blood cells appear to coming in as the hemoglobin levels have been holding better.  The platelets are still low and Michael is still needing transfusions daily, but we were always told the platelets would be the last to come back.  
So why the sudden increase in cell production?  We don't know for sure, but one week ago the doctors stopped one of the meds he has been on as they said it could rarely suppress the bone marrow and might be interfering with his Tacrolimus (helps prevent Graft vs Host Disease) which also could effect the white cells.  So we have to wait and see how the trend continues.  
As always, we thank you for every prayer for his body to produce his much needed white and red cells and platelets.
However,  as he has been producing so many new cells, Michael is less awake and less able to move.  My theory is his body only has so much energy and he is using most of it to make new cells.  His oncologist said the bone marrow where the cells are produced are the second largest organ of the body and it would require a lot of energy.
We thank you for your continued prayers for Mike's production of his blood cells and for his waking up and moving.  And we thank you for prayers to protect him from infection and for healing of his entire body
And thanks to the moving crew who got Melissa moved on Saturday.  Her apartment looks great!!
We thank you for your concern and love and prayers!!

Keep Praying for the Bone Marrow to Function

The white blood cells almost doubled from yesterday to today.  But, we would appreciate your continued prayers to keep the healthy production of the white blood cells coming, as well as the healthy production of red cells and platelets.
And thank you so much for your prayers to protect Michael from infection, especially while the white count is low.
The doctors are continuing to wean Michael from the vent and he is still trying hard to wake up.  So we thank you for your prayers for his healing and waking up.
Thank you so much for your support and love and prayers.  And we can't thank enough all of the volunteers who have come to sit and pray and read or talk to Michael or just watch over him while he sleeps to give us a break.  Your support is what keeps Michael and all of us going!!
And yes, Melissa is getting set to move out to her own apartment on Saturday.  She has her moving crew ready to go.  Thank you!!  Her apartment will be much closer to her work and  to visiting Michael (plus a place of her own).  She's been a huge help to her brother and a major advocate--Thank you Lissa!!

Still Ups and Downs + Big News for Melissa

Hello to everyone and thanks again for all of your prayers.  Over the weekend Michael was more sleepy and did not follow commands as much.   However, the last three days, he has been becoming more awake.  Today, he has been opening his eyes a lot and still trying to focus.  He also was following commands more and is beginning to move spontaneously.  While he is moving more, he is still very weak (the weakness means it will be a longer time for rehab).  He is getting both Physical and Occupational Therapy and today he was really trying to move more--Michael is fighting!! 

Still, he has the issue with not producing as many white blood cells (which fight infection), and not producing platelets or red blood cells.  This is still a major concern.   The doctors are consulting again with the doctor in Houston.

We appreciate your continued prayers so much for Michael's continued awakening and rehab, and for the bone marrow to begin producing healthy white and red blood cells and platelets.   And for Michael to remain free of infections and complications.  Thank you so much for every prayer, visit, meal and all the love your are sending his way.  Thank you!!

Also, Melissa has a big announcement: she is moving out this weekend!  She is moving into a very nice apartment in Union Hill and is very excited to have a space to call her own.  The apartment is 10 minutes from her work and 15 minutes from the hospital, and it provides a closer place for family to relax.  

There are a few ways we would love your help:

• Melissa won't be able to be at the hospital much this week, so we would love to fill the remaining volunteer spots on the calendar.
• Melissa is moving on Saturday morning, and could use some help: loading at the house, driving to KC, or unpacking at the apartment.  There is some more info on the calendar.  Please let Melissa know at 816-807-6024 if you'd like to help.

http://www.carecalendar.org/logon/82346

CALENDAR ID : 82346

SECURITY CODE : 5377

More Awake at Times

Hello everyone and thank you all for your prayers and concern.  Michael is waking up more at times.  He is opening his eyes, and is trying to figure out what he is seeing.  Yesterday he gave a big thumbs up to the nurse.  But most of the time he does not follow commands and when he does move to commands it is a small motion.
We have found out some information about the Bone Marrow Aspiration which was done last week.  Between consultation with the Oncologist, Dr Davidner, here and the Stem Cell Transplant Doctor, Dr Bashir in Houston, they have determined about the bone marrow is that he does: have the donor's bone marrow, he has no lymphoma and he has no Graft vs Host Disease.  These are all good findings.  However, we still do not know when the function of the bone marrow will return to producing red blood cells, platelets and more white blood cells.  His infections and some of his antibiotics could have suppressed this some.     
With the help of beta blockers and more dialysis (which we are still hoping and praying is temporary), Michael's blood pressure and heart rate are better.
Our prayer concerns continue to be for Michael to wake up and to start moving more, to avoid infection, to keep his heart and lungs strong, and to stay close to God in his thoughts.
We thank you all for your support and concern and prayers.  Every visit, meal and prayer has been a blessing to us!!  We appreciate everything so much!!

Uneven Progress

Hello Dear Friends and Family,

Just a quick update today.  Michael had a rough day yesterday.  He was not alert and did not move much for the doctors, even for pain stimulus.  His heart rate also got very high when they combined dialysis with a breathing trial (when they reduce ventilary support to see his ability to breathe on his own).

Mike had a better day today, opening his eyes several times and tracking motion once.  He still has cardiac issues, and is taking large amounts of beta-blockers to bring down his heart rate and blood pressure.

Our goal is to get a second MRI tomorrow to see if we can get any more information about his condition, as Mike is still not waking up.  So we are praying for Mike to have calm resipirations tomorrow which will allow him to use the special MRI ventilator so we can get the scan.  We pray for the strength of his heart.  We pray for the health of his brain and mind.

Thank you to our family, friends, and neighbors for making Brenda's birthday + Mark and Brenda's Anniversary a special day.  Seeing Mike's eyes today was a tremendous gift and blessing as well.

New Needs on the Care Calendar

Hello Dear Friends and Family,

For a quick update on Mike, he continues to open his eyes sometimes and has show more voluntary motion today.  The dialysis has taken off quite a bit of extra weight and the swelling in his eyes has lessened.  They also took him off full ventilator support for a few hours today to see if he could participate more in breathing, and he did well.

We thank you so much for the support you have given us in Kansas City, and we thank Kathy Campbell and the Caring Ministries at Lee's Summit United Methodist Church for the creation and promotion of our Care Calendar.

In the hope of giving Brenda and the rest of the family more support in the hospital and the ability to leave the hospital for a few hours a day, we have added more volunteering opportunities to the calendar.

Before you sign up, please review a few important notes for our ICU visitors:

• Please note, most of these new opportunities are listed as "Solo Visits," meaning Brenda will not be there with you.  So please sign up if you are willing and able to sit with Michael alone, record any updates in a log, and write down any updates from doctors.  You don't need any medical experience :)
• The ICU has allowed us special privileges, but we cannot abuse them.  As a volunteer, we ask you to help us ensure there are only 2 visitors in the ICU at a time.  If an unexpected visitor (such as a grandparent or minister) arrives, please step out until the visitor leaves.
• Visitors are officially not allowed in the ICU from 2-4pm and 6-8pm. We have been allowed to be in the ICU during this time, but it is very difficult to enter the ICU during this time.  So please do your best to enter the ICU before these times, and to stay in the ICU during nonvisiting hours so you don't have to try to re-enter during prohibited times.  

http://www.carecalendar.org/logon/82346

CALENDAR ID : 82346

SECURITY CODE : 5377

As a quick note, Brenda's birthday is this Tuesday.  She also has a doctor's appointment that day, so it would be great if we could get the volunteer spots filled that day, so she can keep her appointment.

Thank you so much for everything you have already done for us and your continuing eagerness to do more.  You are a blessing.

Waking up slowly

As always we thank you for your continued support and prayers.  Michael is showing signs of waking up.  He has been opening his eyes more and is trying to start focusing on things.  He is moving more, most of the time he does not follow commands but several times a day he has been wiggling his fingers or trying to squeeze with his hands.
While this is encouraging, we are hoping for more progress soon so we can get back to the rehab phase.  This setback has been also hard on his lungs.  So the sooner he can be moving more and strengthen his muscles, the sooner he can wean from the ventilator.
The doctors are also concerned about his need for blood and platelets. We are waiting on results from his Bone Marrow Aspiration done earlier this week.
We can't thank you enough for all of your continued support and prayers.  Our prayer needs are for Michael to continue waking up--becoming aware of his surroundings and to become oriented, able to move all extremities well and no more seizures, for his body to be producing his own red and white cells and platelets, for healing of his lungs and weaning from the ventilator, healing of his kidneys and no more infections or Graft vs Host Disease.  And thank you for your prayers for the doctors and the nurses in their decisions and in their care for Michael.  
Your support and prayers have been a huge blessing to Michael and to all of us.  For anyone that missed the last blog entry if anyone wants to help, there is a link to a Care Calendar for meals, visits, platelet donations and so on. And for those who can only do prayers now, that is so apprecitated and cherished as well.
Special thanks for the delicious and thoughtful meals, treats for the nurses, and the sitters who have come in.  Tim Donovan read his notes from the trip he and Michael went on to Nicaragua in 08.  James, Michael's good friend from Iowa came down for several days.  There are so many to thank and I can't do it now, need to get back to Michael.  And as always thank you for every prayer, positive thought and visualization of Michael healing and getting on with life and giving back all of the wonderful love he has received.  Thank you to all!!

Care Calendar for Visits and Needs

Hello Everyone,

Quick update, much is unchanged since our last post.  Mike has been showing a few small signs of alertness (new motion in the legs, and he seems to open his eyes sometimes), but he also seems to be irritated by his tracheotomy and is coughing more.  As always, we continue our prayers for Michael's body to heal itself, for the doctors to make wise care decisions, to receive caring and compassionate nurses, and for infections and complications to stay at bay.

Thanks to the efforts of Kathy Campbell and the Caring/Stephen Ministries at Lee's Summit United Methodist Church, we are happy to share our CareCalendar

We have several different ways for you to help, since so many people have asked what they can do:

• Be  well – if you’re going to volunteer in any way it’s critical that you don’t take any illnesses their way– Michael’s immune system is severely compromised  - so if you’re under the weather please DON’T take those germs to Michael or the Hill’s!
• Bring a meal (hot meals and deli-type meal opportunities available throughout the week).  Please make small portions as we only have a small fridge.
• Bring treats for the ICU nurses
• Give Platelets or Red Blood Cells in Michael's name (he doesn't get credits, but makes it more likely he will get them if he needs them)
• Visit Mike.  Brenda will be there during your visit, but it allows her make calls or step of of the room.  You can read to Mike, pray, or just keep the family company.  We are in the ICU, so only 2 people are allowed in the room at a time.

Sign Up by Here: http://www.carecalendar.org/logon/82346  

     CALENDAR ID      :   82346

     SECURITY CODE :   5377

Any need that shows up as red on the calendar is available.  Needs in green have already been taken care of.

Call Melissa (816-807-6024) or Brenda (816-807-6014) for to schedule meal drop-offs (either at Holiday Inn at 45th and Main, or at the hospital).

Thank you so much in advance for your help and support.  If you can't sign up for anything, don't worry!  We cherish your prayers.

We love you!

Still Waiting for Michael to Wake Up

Hello dear friends and family,

We still have not seen any signs that Michael's condition is improving.  The EEG of his neural activity is still not showing much activity.  Several of the doctors we spoke to today were not positive about his outlook since, in addition to the reduced neural activity, he still has many additional health issues we are dealing with such as his continued dialysis, dependence on the ventilator, constant need for platelets, and ongoing low-grade fevers.

We pray the doctors can find the cause of the decreased neural activity, that all other issues, infections, and symptoms can be kept at bay, that Michael starts to show more brain function, and that he wakes up.

Thank you, thank you, thank you for your prayers, support, and love.

 

Still Testing, Condition Unchanged

Dear Friends and Family, thank you so much for your ongoing support and love.

The MRI did not show anything further than the 2 small sub-dural hemotomas.  They didn't see any legions or tumors.  The neurologist thinks this may be a result of his seizure several days ago, and that an extended period of rest may allow him to heal.  We would like to get a second MRI of his spinal and lumbar region to confirm the cause of his current condition.  We are still operating on the theory that he may have meningitis, and he is getting medications to combat it.

We're continuing our prayers for healthy levels of platelets and red blood cells, and for no more seizures or infections.  We are also contiuning our prayers for the recovery of his bone marrow and his kidneys.
Thank you for your prayers for Michael to WAKE UP and get back to rehab and recovery so we can bring him home.

Move to ICU

Hello to all of our prayer warriors!!  We can't thank you enough for your continued prayers and concern!!  Prior to the seizure Michael had last night, the plan was for the Neurologist to see Michael today as he had some twitching and jerking in his legs (they had been looking at different things in his blood like Magnesium and Calcium and Electrolytes).
Anyway we met the Neurologist in the ICU today.  Initially last night we were told the CT scan was negative, but the Neurologist, Dr Kosa, said there were two small bleeds in his brain called subdural hematomas--the space between the skull and the brain.  At this time, they are not big enough to treat which is good because of his low platelets.  So for now the treatment is to give him more platelets and let his body heal.
Another issue is that he had a fever this morning, so they are also treating him for meningitis.  But they have done cultures in case it is somewhere else.  New antibiotics were started today.
Tomorrow they hope to do an MRI test which will give the doctors more information about what is going on.  He had an EEG today to look at his brain waves, which was not bad considering the seizures and the meds he was on.
So how is Michael doing?  He did have one more seizure this morning and he is now on meds to help that.  The doctor said that it is not uncommon for this kind of bleed he has to cause irritation to the brain and then cause seizures.  Right now Michael is not responding to our voices, but he does respond to pain.  At this point this is okay that he is not responding, but he needs to start waking up for us. 
For our prayer concerns we pray that the bleeding stops and his body responds well to the platelets (and his body start producing all the red blood cells and platelets it needs and to continue to white blood cell production), for all infections to resolve, for Michael to wake up quickly and that this is just a small bump on the way.  And as always prayers for the doctors and staff caring for him.
Thank you!!  Thank you!!  Thank you so much for all of the prayers for healing!!

New Symptoms + Request for Prayers

Hello everyone, just a very quick update.

Yesterday evening around 7pm (after an increase in confusion and more twitching), Mike had a grand mal seizure lasting about 1 minute.  After the seizure he was dazed, seemed to be in pain, and moved his hands and arms continuously and has remained in that state (in varying degrees of intensity).

An initial CAT scan doesn't reveal anything out of the ordinary apart from an ear infection.  We are following up with blood scans and a neurology consult.

Thank you in advance for your prayers.  We are praying for Mike to get some rest and relief from any pain he may be having, and we pray to find out the cause of these new symptoms.

Settling In and Reconnecting

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.

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!

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.

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!!

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.

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.

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!! 

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!!

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!!

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.

• 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.  

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.

Birthday Thanks

Hello everyone, thank you so much for your love, prayers, and birthday wishes.  For Michael's 23rd birthday today we received numerous cards, facebook posts, and presents; all of which we described to Michael.

The past few days have been very long and very busy.  We had a transition in our ICU doctor which was very difficult to navigate, as his strategy was extremely different from our protocol last week, relying on standard protocol(which carries a low success rate) and discounting any potential emerging treatments (including nutritional steps).  After conferences and negotiations with many different hospital staff members, we were finally able to re-incorporate our our IV protein source today, which we feel is necessary for his success.  We know we couldn't have a big party for Mike, but returning protein to his treatment is the only present we wanted to give him.

Mike's tracheotomy has proven very helpful, as we have been able to transition back and forth to the ventilator as needed.  As of Wednesday evening, he has been breathing on his own (with the addition of some oxygen enriched air to the airway) since 6am.

Mike still has many challenges to overcome, but with the re-addition of his protein and his breathing progress, we feel this is a birthday to celebrate.

We can't thank you enough, dear friends and family.  Bless you.

Prayers for Guidance

Hello everyone, first a quick update: Michael had a tracheostomy today which gives the doctors greater flexibility in taking him on and off the ventilator.  We also believe it will be more comfortable, and certainly not as disconcerting as the previous tubes in his mouth and throat.  He is still heavily sedated, and we are waiting for his lungs to continue to heal and stay clear.  We did discover a return of the adenovirus which had contributed to his original complications, though we don't know how strong it is.  We're praying that the returning adenovirus is minor, and that Mike's body will be able to fight it again.  

Now dear friends and family, we're specifically asking for your prayers as we work with our medical team here to set Michael's strategy for treatment.  As a part of the clinical rotations, we have a new doctor supervising Mike every 1-2 weeks, which can be a frustrating situation, especially when a trusted doctor rotates off of our case.  We are currently working with the doctors and the hospital to ensure greater stability in his treatment plan.  Michael remains in critical condition, and we work to find a balance between the accepted treatment protocol for his condition, and emerging strategies that may provide an chance to improve his prognosis.  More than anything, we're working with our medical team to develop a strategy of hope and positive expectation.

This is a very important juncture for his treatment, and we are convinced that not only medicine, but faith and positive thought are crucial to his recovery.  We've been meditating on the following thoughts, and we invite you to as well:

• Continued prayers for God's intervening grace in Michael's recovery
• Positive thoughts for our medical decisions and his recovery
• Visualizations of Michael's future endeavors and successes
• Grateful celebration of Michael's upcoming birthday (6/29), and visualization of birthdays to come

We cannot thank you enough for everything you have done for us, and we thank God for you everyday, dear friends and family.  Thank you.

Resting

After putting the breathing tube back late Thursday night, the doctors have been letting Michael rest on the ventilator on sedation. The insertion of the breathing tube directly into the trachea should be tomorrow or Tuesday.  It will be more comfortable and should make it easier on Michael to wean from the vent.
For now Michael has been more comfortable and we're praying his body is using this time for healing.  Michael is on lots of meds and has lots of bloodwork and tests to monitor him.  He remains on dialysis--hopefully it is temporary
We appreciate your continued prayers for the healing of his lungs, his platelets to rise, no more infections and prayers for all the doctors and staff caring for him.

Breathing Tube Back In

Michael's breathing became more labored and the breathing tube was put back in late last night  and he is on the ventilator again.  He is back on sedation to let him rest and heal.  Probably on Monday they will put in a trach tube so that it will be more comfortable and easier to maintain.  It also will be easier to wean him from the vent.  
He had a little bit of bleeding from the insertion of the tube (which is normal to have a little), but they were concerned since he had the bleeding into his lungs as his initial problem which brought him to the ICU.  So they bumped up the steroids that were given for this, which had just been decreased.
Anyway, this is a setback, so we are praying that it does not slow things down too much.  Your continued prayers for the healing of his lungs, for all infections to resolve, no further complications and prayers for all of the decisions and care that the doctors and staff are providing him are appreciated so much.
Thank you.

Breathing Tube Back In

Very quick update.  The doctors ended up putting Mike back on the breathing tube, and he's now heavily sedated again to give him a chance to rest and heal.  They will likely perform a tracheotomy soon since he's been intubated for so long.  The tracheotomy will probably leave a small scar, but will ultimately be more comfortable for Mike and will allow for an easier transition to breathing on his own.

Thank you all for your prayers and support.  It is so sustaining.

Breathing Tube Out - Praying We Can Keep it That Way

Hello everyone, the doctors finally decided to take Mike off the breathing tube today.  Mike did well initially, but then got very anxious and his oxygen saturation began dropping.  They switched the oxygen mask that he's using and have made a few other changes, and Mike seems more calm now.

We are asking for your prayers that Mike can remain calm and comfortable and the medical staff can come up with solutions to keep his oxygen saturation high.  Putting the breathing tube back in is an option, but it may further damage his respitory system, and would certainly be extremely unformfortable for Mike.

We are praying that this is a step forward for Michael!  Thank you so much for your support and prayers.

On another note, Michael's birthday is coming up (June 29).  If you'd like to send a card (address on right), I know it would certainly be appreciated. 

Big Decisions and Protein

The big decision about the breathing tube is coming soon.  Today Michael has been on target to possibly get the tube out tomorrow.  It will be a day to day decision.  The sedation was lifted this morning and he was able to follow commands and much of his breathing today was on his own except for some added pressure (CPAP).  The sedation is back on so he can rest for overnight.
Dr Villalobos will be making this critical decision.  He also decided to increase Michael's protein after doing several tests.  He feels more protein will help his lungs heal.  He says in Greek the meaning of protein is "I am first" (or of first importance).
Our request for prayers are for the additional protein to help the lungs to heal and repair, for the timing of the removal of the breathing tube or trach to be at the right time, for no infections and prayers for Dr Villalobos and all other staff caring for Michael.  Thank you so much for your continued prayers and concern for Michael.

New Week

Today brought new changes of doctors with the new week.  Michael has both a new ICU doctor for the next week, Dr Villalobos (pronounced Vee ya low bose) and Dr Bashir who is in charge of his Stem Cell Transplant Care for the next two weeks in the hospital (he is also his main doctor for transplant care).  Both will be coordinating his care.  
The biggest decision this week is the decision on the breathing tube.  They will be deciding whether to take the tube out  and let him try to breathe on his own, or to put in a trach tube if they feel he will need longer to keep an airway.  Dr Villalobos will be the one making this decision.  He also feels he needs more nutrition, so he is evaluating this as well.  After meeting with Dr Villalobos, who spent a lot of time explaining what he intended to do for him and how he plans to evaluate him, we realized he is a very special doctor.  He also told us, he will be praying for Michael and family and he says he would like us to pray for him.  I told him we would.
We thank everyone for your ever present prayers for Michael.   Special requests are for Michael's healing for his lungs, for all infections to resolve, and for Dr Villalobos and all doctors, nurses and staff caring for Michael and for all the decisions that will be made for him.
And thank you to James Arther, who came for a visit and to help, and also donated a bag of platelets.  And thanks to Aunt Nancy, Renee Hacker with their help this week and to Ella Hackney who helped last week.
Thank you, your prayers really help.

Quiet Day

To update briefly, it has been a quiet day.  Michael remains heavily sedated so his lungs can heal.     His chest x-ray today was improved a little.  His oxygen levels in his  blood have remained at a good and steady level.  
We thank you for your continued prayers for no more bleeding into his lungs and for the healing of his lungs as well as prayers for resolving of all infections. 

A Renewed Request for Prayers - Return of Bleeding in the Lungs

As always, we open with a message of thanks to all of our dear friends and family for your support.  You are a constant blessing to us.

Although we had hoped to get Michael off the ventilator yesterday, we've had a setback with his lungs.  As of yesterday, Mike was breathing on his own, with a relatively low percentage of oxygen (35%) and performed well on his breathing tests.  Then his the oxygen saturation in his blood began to decrease, which seemed to be exacerbated by some stressful procedures he had later in the afternoon.  When they suctioned his lungs that evening, they found some blood in his lungs, and kept his lungs under closer observation.  They returned breathing control to the ventilator and increased the percentage of oxygen he received in order to help him rest after a stressful day.

This morning, the ICU doctor decided to further investigate the cause of the blood in his lungs with a bronchoscopy (sending a camera down the breathing tubes into his lungs), and discovered that he was bleeding from the aveoli (tiny air sacs distributed throughout the lungs), a return of the original symptoms that brought to the ICU.  After seeing the return of the bleeding, the doctors determined that Michael's lungs did not keep up with the reduction in steroids and our efforts to wean him from the rest of his medications.  We are now restarting the steroids and will be restarting much of his treatment.

Since Michael has had a breathing tube for 10 days, the doctors will be looking to provide a more permanent solution, which will make him more comfortable and improve some of the risk associated with intubation.  Within the next few days, we anticipate that the thoracic surgeon will be performing a tracheotomy to replace the current breathing tube connected to the ventilator.

The return of the bleeding is particularly troubling since he has been in the ICU for 10 days, and we pray that he has the strength to restart his treatment.

In order to ensure that his lungs are not stressed, Mike will be placed under extremely heavy sedation.  This will prevent any coughing or agitation to the lungs.   This means that we are most likely starting a new stage of a long journey in the ICU.  It is a very disappointing setback, as we had hoped to have him out of the ICU this weekend.

Although we are disappointed, we gain strength from the messages of encouragement from everyone.  Please forward Michael's name to your prayer lists and friends; our network of prayer is a source of wonder and peace.  We pray for strength, endurance, and patience as Michael's body heals.

We're also grateful to Nancy DiGiovanni and Renee Hacker who are staying in Houston and are helping attend to Mike, work through our insurance paperwork, and complete basic household chores.  And we also received a gorgeous floral arrangement from Mike's friend Katie Ferris, which has lifted our spirits daily.

The picture of Katie's flowers we put up beside Michael's bed.

Signs of Improvement

The last two days have been better.  While Michael has many health issues, the biggest priority has been the healing of his lungs and getting off of the ventilator.  Yesterday, the doctors said they were pleased with his progress.  Today, there has been a further decrease in the oxygen level he is on.   And for the last 30 hours, all but one hour, the ventilator was not providing breaths for him, only a little added pressure to the breaths he took (CPAP).   This afternoon he was able to breathe on his own (with the tube still in place) for about 40 minutes without any added pressure--this is a big step.
Michael's meds for sedation have been changed and it seems to be helping his agitation, so it will be easier to pass his breathing tests for extubation (getting the breathing tube out).  If all goes well, it could happen as early as tomorrow, but it may be later.  When the tube is removed, they will be watching him closely to see if it would need to be reinserted.
Our requests for prayers are for the continued healing of his lungs and for extubation when the time is right so the tube will stay out, for his continued healing of kidneys, any infections and resolving of Graft vs Host.
Thank you for all of your prayers for Michael for his healing and his strength.

Working to Get Off the Ventilator

Dear friends and family. Thank you for your containing support and your invaluable prayers.

Michael remains heavily sedated and is still depending on a ventilator. Our days are a balancing act between treatments, drugs, and medical conditions. There are several positive signs, as well as continuing challenges.

Dialysis has begun. They took off 5 liters of excess fluid yesterday and 2.5 liters today. It seems to have improved his creatinine levels as well. The doctors assessed that they removed all necessary fluid today. They will reassess tomorrow to determine if there is any addition fluid that may redistribute and need to be removed. Michael looks much more like himself now that we have removed so much of the water he has been retaining.

We are happy to share that Michael is getting nutrition through a feeding tube, and has reached the optimal rate of 65 mL per hour of Peptamen AF. Although the feeding is going well, it is also accompanied with diarrhea. We have started cultures to determine if this is caused by a drug interaction, C-Diff, or graft v. host. We are praying this not a symptom of graft v. host, as intestinal graft v. host can be particularly difficult to treat.

Even with the disruptions from the dialysis process, his oxygenation is improving. When he came into the ICU he was getting between 95%-100% oxygen through the ventilator; now he is getting 45%. We are anxious to get Michael off the ventilator, but are waiting for further stabilization.

His blood sugar level is slowly stabilizing (currently at 136), and we hope that his new nutrition source will allow us to achieve greater control of his bood sugar level.

His daily chest x-rays have not improved, still showing areas of inflamation and fluid in the lungs. This may not be an insurmountable problem, but we won't fully know the state of his lungs until he is taken off sedation.

The doctors have started evaluating Michael's response to reduced sedation. Every day they reduce the sedation rates and observe several indicators: how does he oxygenate, can he follow commands, and how do the lungs react. So far, when Mike's sedation is reduced, he becomes very agitated. Being intubated is very uncomfortable and the heavy sedation and restraints can cause confusion and panic, so his agitation is normal, but it does cause an increased load on the lungs and also seems to distract his lungs from working efficiently. Until he can maintain his lung efficiency without sedation, he cannot be taken off the ventilator; so we ask your prayers for Michael to overcome the discomfort and confusion of his sedation dreams so that he can wake.

Getting off the ventilator is a critical step that will allow Michael to begin to heal. Thank you for your prayers for Michael. We pray that he is defended from the myriad of viruses and infections present in hospitals, that his medicines can be effective without undue side effects or reactions, and for the wisdom our our medical staff. Thank you to everyone; we are so grateful for you.

Prayers for getting Michael off Vent

Still taking steps to get off the vent.  One step for that is decreasing the sedation, so that means Michael is more restless at least part of the time.  The oxygen percentage he requires is close to where it needs to be, but they also need to decrease more of the pressure that forces air in his lungs.
His bleeding times are normal, but still low platelets.  They may give him dialysis, hopefully just temporary as his kidney function is decreased.
Our prayer requests are for Michael to be able to come off the vent soon and stay off, for the kidney function to improve, need for blood and platelet transfusions to decrease, and for any infections to resolve.
Thank you so much for every prayer.