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.