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.

Briefly

The progress is slower, but Michael is moving forward to get off the ventilator.  The oxygen was decreased a little this evening and they will continue to decrease both the oxygen percentage and pressure it is given with.  He has been breathing a lot on his own.  He is still heavily sedated, but he has been started on Physical Therapy which he has tolerated well.  Also some food today--okay it is through a tube, but at last some nutrition to help his body heal.
Our prayer requests remain for Michael's lungs to heal and to be able to come off the ventilator soon, for the kidney function to improve, less requirements for blood and platelets (which has been better), and for all infections to resolve.
Thanks again for your support and prayers.  We feel your love and concern.  And we know Michael does too.  Thank you!!    

Quick Update

Michael's morning Chest X-Ray was better than yesterday, which was better than the day before.  The doctor's are working to get Mike off the ventilator, so there have been numerous changes to the vent settings.  As of now, the oxygen percent he receives is higher than yesterday, but the pressures are less and he is breathing some on his own.  They will try to decrease the oxygen percent tonight as tolerated.
Michael is still heavily sedated, so the tube is more comfortable, but they will work on weaning that as he is ready to come off the vent.  
There continue to be many issues, the biggest right now to get him off the vent.  Our prayer requests are:  for his lungs to heal and for Michael to get off the ventilator, for bleeding times to continue to stabilize, kidneys to function well and for any infections to resolve.
Thanks to everyone who has continued to pray in earnest for Michael and all of your concern, and thank you to the new members of our widening prayer team.  Thank you Darby family (and friends and church members) in Houston (an amazing connection).  
We continue to talk to Michael and tell him of your love and support.  We know he hears us.  Thank you so much.

Praying for Stabilization

Dear friends and family, thank you for your loving prayers and messages of support. They have been sustaining and uplifting for our family.

Just some of our notes of support

Please forgive the brevity of our past few posts, as we've been very busy at the hospital. On Monday, Michael's cough worsened to the point where he had trouble catching his breath, and reduced the oxygen saturation in his blood. Upon the direction of a team of doctors from different departments, Michael was admitted to the ICU that evening. Upon further testing, they found that he was bleeding into his lungs, which caused his breathing to be very labored and unproductive. So on Tuesday, they decided to assist his lungs by putting him on a ventilator. Michael is under heavy sedation so that he can be on his ventilator without discomfort. This gives the lungs a chance to improve without excess irritation from coughing, and allows the medicine to be more effective.

We were unsure whether the irritation of his lungs was bacterial or viral, so the doctors started with a spectrum of antibiotics. The doctors also diagnosed disseminated intra-vascular coagulation (DIC), which can cause small blood clots and bleeding throughout the body. The doctors let us know that the antibiotics were not doing enough, so steroids, a solution we have been avoiding because they inhibit the immune system, would be his only chance to stabilize.  Since the start of his steroids and his care in the ICU, his condition has somewhat stabilized, but remains critical. There are several changes that the doctors are viewing as a stabilization: we have reduced the oxygen percentage in the ventilator from 90% to 55%, his lung Xray showed no worsening and perhaps an improvement, his blood pressure has stabilized, they have installed a feeding tube, and the staff has been able to reduce his sedation medicine. We are still working to stabilize his blood sugar, balance the effects of the steroids on his body, heal his lungs, and cure the underlying diseases that caused these recent complications. Over the next few days, we will be fighting to maintain stability in his condition so that he can then start to improve.

Due to the sedation, Michael is unconscious. We talk to him constantly and he holds a prayer cross in his right hand. We tell him about the messages we receive from everyone, and about the numerous and heartfelt prayers that are being raised up for him.

Currently, Brenda and Mark are in Houston. Melissa also flew in on Wednesday. We are also blessed to share that Ella Hackney is in town assisting us, as well.

No posting is complete without a reflection of our gratitude for the love and support we have felt throughout this situation. We have seen gifts of every kind, including gifts of time, concern, wisdom, food, service, and prayer.  We thank you for your continued prayers.

Serious Condition

Michael was put on a ventilator this morning, and his chest x-rays have not been promising.  We will start steroids soon.  We need your prayers now more than ever.  Thank you dear friends and family.

SOS for Prayers!

Michael's cough has gotten worse and the doctors now suspect that something viral or bacterial is resting in his lungs.  He has moved to the ICU where they can keep a very close watch on him.  This is a very serious complication for Mike.  A team of doctors has consulted on the probable cause and we will be administering large dose of antibiotics this evening.  Dear friends and family, we need your prayers that this will be enough to heal the lungs.

If he doesn't improve from the antibiotics, the doctors may be forced to administer steroids, the best defense against viruses.  However, steroids are very dangerous for a post-stem cell transplant patient, as they may cause his body to start destroying the new graft cells.

We pray for the wisdom of the doctors, the efficiency of the treatment, Mike's strength and endurance, and the guiding hand of God.  Please forward to your prayer chains and friends; our network of prayers is a blessing.  Thank you for your loving support and prayers.

Busy Days

The days have been very busy making it hard to update the blog, and then we have had no internet connection for the last ten days in the apartment and the reception is extremely spotty at the hospital.
Anyway to news on Michael.  We got good news on the virus in Michael's blood.  The viral load had decreased by over 80%!!  But, there are several other major issues:  trying to prevent Graft versus Host Disease (GVHD)--which they are doing the Photophoresis (he had on Thur and Fri last week and will get three times this week), and he has still had fevers so they have changed the antibiotics (which is possibly the cause of a big decrease in appetite in last two days).
The infectious disease doctor thought fevers probably due to neprhrostomy (kidney) tubes which were leaking and one had slipped a little out of position.  The doctors repositioned the one tube on the right on Friday.  But they found both ureters (from the kidneys to the bladder) were swollen from the original viral infection and so he will need the need to keep the neprhrostomy tubes in for a while.
With everything going on, Michael still gets out walking in the hall at least four times a day.  The doctor wants him moving, so that he does.  Tomorrow will be interesting in that the doctor who has seem him daily and made all the decisions will change and we will have a new doctor (they have two week rotations).  So we will be very interested in what this doctor has to say.
Melissa has been here since Wed night, but will go home tomorrow afternoon.  She helped get me caught up on some things around the apartment and she helped with Michael so I could get more rest.  Thanks Lissa.
Our special prayer requests:  for the Photophoresis to prevent GVHD, for the viral infections and any bacterial infections to continue to clear, for the kidney tubes to remain functioning well and for the return of his appetite.  
Thanks for your continued prayer and concern and support.  (The decrease in the virus is amazing!!)  Keep all the prayers coming.  Thank you!!!

Fevers better

Fevers are better, but still have a way to go before we can get Michael out of the hospital.  The doctors tried to insert a new central line today so they can start a procedure called Photophoresis (more on this later, but it is a way to keep GVHD from surfacing again, especially while they are weaning the steroids faster than they wanted to).  But they were unable to go into the old site (the easy way), so they will put in a new site tomorrow and start the Photophoresis later in the day.
Another issue is one of the Nephrostomy tubes is not working right so he needs to have that procedure redone, hopefully it will be pretty quick.  They are supposed to be getting him worked in tomorrow.
Michael still requires frequent blood and platelet transfusions.  But the fevers are better for now and Mike looks pretty good considering all that is going on.  He is up walking in the halls and still trying to eat and drink as much as he can--that is tough for him as he does not have much of an appetite.
Melissa just got in tonight and is already in the swing of his cares and getting him moving.  I'm leaving early tonight to go back to the apartment and leave brother and sis together--hopefully no old scores to be settled.
Our prayer requests--that the viral and other infections continue to resolve, the kidney tube to be redone without problems, that Michael's appetite return so he can heal faster and the need for transfusions to decrease.
Thank you so much for your love and prayers.  We appreciate them so much!!